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The Dark Side of Aromatase Inhibitors

The Dark Side of Aromatase Inhibitors – Part 2

I have so much to say in this post that I don’t even know where to start. I guess you could say this one is a bit of a rant. And that promise to work on being less wordy – well, not today!

I’m a firm believer that a good rant now and then is a good thing, even a healthy thing, so that’s one reason I’m sharing about my experience with the dark side of aromatase inhibitors.

First of all, many women hesitate to talk about the nasty side effects of AIs because they don’t want to be perceived as complainers or whiners.

What does this say about me? I’m not sure, but guess what? I don’t care.

I say if you don’t speak up, your doctor will just naturally assume (and rightfully so) that everything’s fine. If a whole bunch of us don’t speak up about whatever the issue might be, why should we expect things to ever change?

Can complaining a bit be a form of advocacy? I say yes.

As I mentioned in my previous post, the three FDA approved drugs most commonly prescribed for adjuvant hormonal therapy for post-menopausal early stage , HR-positive breast cancer patients are anastrozole (Arimidex®), letrozole (Femera®) and exemestane (Aromasin®).

It should also be noted that such drugs are also sometimes used for other purposes, such as treatment of metastatic breast cancer and even for prevention purposes.

AIs have been proven to be effective in preventing recurrence. This is a good thing and it’s important to take them and keep taking them if one has been prescribed for you and you are able to tolerate it.

I am not suggesting and would never suggest that a woman do otherwise.

The side effects of all three of these drugs are similar and include bone loss, weight gain, fatigue, hair loss, vaginal dryness, loss of libido, joint pain, insomnia and bone fractures to name a few. And of course, some of these same side effects also affect some women taking Tamoxifen.

The AI drug of my original oncologist’s (I’ve had five oncologists due to various reasons – trust me, I’m really not that difficult a patient) choosing was Arimidex®. I started on it shortly after finishing up chemotherapy and have been on it for two and a half years.

I am taking a short break at the moment because, well… because of that dark side.

At every oncology appointment since I began my adjuvant hormonal therapy, I was asked the same question; you might very well know the one, are your side effects tolerable?

Finally, at my most recent appointment I said, “No, they are no longer tolerable.”

Stating this was really hard for me and it was a very unpleasant appointment for a whole variety of reasons that I won’t go into, but I had reached a breaking point of sorts as far as side effects go…

Shortly after I began taking Arimidex®, sleep issues due to leg pain and leg cramps (to name a couple) started up. Aches and pains in my joints/bones became significantly bothersome 24/7. I began to feel like an eighty year old woman when trying to get out of my car, rise from a chair, sit through a movie or just move around period. In addition, quite quickly after beginning on the drug I gained fifteen pounds (am I actually admitting this so publicly?) Last winter I was diagnosed with osteopenia (bone health previously was excellent) and this spring it became nearly impossible for me to walk to the stop sign at the end of my street because of the crippling effect on my feet and toes. Before the drug, I was used to walking two to four miles a day by the way.

I could probably write an entire post on each one of these side effects, but I’ll spare you too many details!

And I get pretty annoyed when my issues were/are brushed aside or attributed to normal aging.

I’m just not buying that. Why not?

Well, because I’m not that old, because I know my body and because I can pinpoint when my side effects/symptoms kicked in.

The bottom line is these issues became bothersome enough that I finally said enough and forced myself to finally admit (to someone other than dear hubby) that the side effects were no longer tolerable.

This is a difficult thing to say to your oncologist; at least it was difficult for me to say it to mine because my oncologist was adamant about me staying on Arimidex®.

I feel damned if I do and damned if I don’t.

I want no regrets down the road. After all I have done everything in my power so far to keep the cancer beast at bay.

Why would I stop now?

Sometimes you have to listen to your body. Sometimes you have to follow your gut. Sometimes you have to take a break.

I am sharing about my experience for the same reasons I share about so many things, in the hope that it might help somebody else feel less alone and more empowered to not suffer in silence.

I know many women out there are suffering in silence.

At every single support group meeting I attend the conversation always circles back to the side effects of these drugs. Someone always brings it up. Just the other day I received an email from a woman who wished to remain anonymous, but she gave me permission to share her reasons for keeping quiet about side effects. She had this to say:

” … the most troubling side effect is my lack of libido. Not only do my oncologists seem lost about this troubling effect, I don’t feel worthy enough to really push to get answers because 1) It’s embarrassing and 2) I feel lucky to even be alive; I feel like this side effect is small in comparison to what other women are going through.

I just needed to share this with you.”

Again, there’s that guilt thing… and not feeling worthy to discuss bothersome side effects with one’s doctors or push for answers is just wrong.

I also know that non-compliance is a huge issue with these drugs. Many women are not taking their little white pill for the recommended five years.

Is this a problem? Of course it is.

Do I understand why so many women stop? You bet I do.

I will even admit that I have seriously considered being deceptive about my own compliance. I have considered tossing my little white pill in the trash while pretending to take it.

Can you believe that?

Ultimately, I decided the heck with that deception nonsense.

So, what am I going to do from here on out?

My plan is to stay off all AIs for two months or so. I want to see how my body responds. I want to see if things improve. I want to see if I start feeling better.

My oncologist did say to me, “Nancy, you won’t go back on if you go off because you WILL start feeling better.”

This logic seems quite twisted to me.

I don’t necessarily agree with the not going back on part of her prediction, and this is one reason (only one) that we parted ways.

So I will detox for a bit and then switch to Aromasin®. For me taking a short break and then switching things up and trying a different drug is the best option right now.

Is it the best one long term?

Who knows, but I’m comfortable with my decision. It feels reasonable.

I wish there were better options. Women deserve better options.

I know that doing everything in my power to prevent recurrence matters – a lot, but my quality of life matters too.

Why must I choose between the two?

Why must anyone?

And finally, please read this outstanding write-up by the amazing Dr. Attai, who asked for input from the #BCSM community regarding side effects of Tamoxifen and AIs. Many thanks to her for wanting our input and then presenting her findings at the recent meeting of the Annual Meeting of  the American Society of Breast Surgeons. Maybe the medical professionals ARE listening, or at least starting to!

Okay, I’m done – for now! Thanks for reading!

If you’ve been on an AI or Tamoxifen, what side effects have you experienced?

Have your doctors been helpful in dealing with side effects?

Have you stopped taking a drug due to side effects?

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I'm done with this one...
I’m done with this one…

 

490 thoughts on “The Dark Side of Aromatase Inhibitors – Part 2

  1. Beth, you may want to try taking Claritin (loratidine) for the bone pain. It (along with acupuncture, boswellia, vitamin D and fish oil) has allowed me to maintain at least limited mobility for the 4 years I’ve been taking Arimidex. There’s no information as to how or why it works, but for some of us it gives great relief. Some cancer clinics use it to alleviate the bone pain from Neulasta injections.
    My Oncologist has no objection to it and my allergist told me that it is the only antihistamine that can be taken long term. Check with your doctor as to whether you have any contraindications. If you do try it, make sure that it is not the form that includes a decongestant.
    Best of luck. I hope you find relief from your pain.

    1. Claritin worked somewhat for me after the Neulasta injection. Hadn’t thought to try it for the joint pain from the Letrozole that I’m on. I’m also on Herceptin which causes joint/muscle/bone pain. Perhaps I’ll try that again. I had Stage I cancer 22 years ago. Had chemo and a mastectomy with reconstruction. Then took Tamoxifen for 5 years. The only bad side effect I seemed to have with Tamoxifen was hot flashes. My onco put be on a low dose of effecxor for that and the hot flashes went away.

      This time, I got cancer in the other breast and was Stage IV at diagnosis, even though I had regular mammograms etc. This tumor was HER2+, ER+, and PR+. 22 years ago they didn’t know about HER2, so don’t know if that tumor was positive for that or not. My onco thinks this is a new tumor, not a reoccurence, since HER2 is pretty aggresive, so I wouldn’t have lasted 20 years if the first had been HER2+. I will be on an aromatase inhibitor and herceptin (infusion every 3 weeks), for the rest of my life or until they stop working. I hate the side effects (fatigue, joint pain, nausea, neuropathy, blah, blah, blah), but the key for me is I’M ALIVE. The average prognosis for Stage IV is death in about 24 months. My doctors (and the drugs) have me currently in a stage of NED (no evidence of disease). We know if will probable come back. I have a PET every 6 months, but for now, I am thankful that I have more time with my husband, children and grandchildren. Some days, I don’t feel well, and have to spend the day just laying around, but most days, I’m good. I go to water aerobics 3 days a week, which has really helped my energy levels. I pretty much carry on as if I were normal, though it’s not normal to have had cancer twice, 6 different chemo drugs, 2 different aromatase inhibitors, radiation to bone and chest for metastasis, and 2 mastectomies and an oopherectomy. My husband and I are doing a lot of traveling right now (have to be back in town every 3 weeks for my chemo), but other than that, we are enjoying seeing the sights while we can.

      God has been good to me and I hope I can be an encouragement to others facing this horrible disease.

      Gayle

  2. Good tips Elizabeth & Kathleen, thanks. My blood results were recently screwy so my onco. sent me to a rheumatologist. His take on all these drugs is that he sees this a lot and it can set in motion any simmering autoimmune diseases. Also triggered by radiation which of course diminishes your immune system. He thinks that what I have brewing is consistent with fibromyalgia/chronic fatigue symptoms and that they may or may not resolve themselves. He suggested I give it another 3 months and then if there is no improvement he would run a bunch of more sophisticated blood tests. In the mean time I will seek out that which has helped you guys on here and try everything!! Will grab some claritin today for sure!

    I’m supposed to start Tamoxifen tomorrow, but honest to goodness I’m scared to and am thinking I should wait until all these side effects have resolved. Any thoughts on Tamoxifen and side effects or side effect avoidance ?

    Thanks girls!!

    1. Beth – I had appt. with my oncologist this week. I am almost 4 weeks post-op my last reconstruction surgery. She understood and agreed with me that stopping arimidex (Nov 4th) was best for me due to severe side effects. She suggested Tamoxifen, and asked if I would try it for 30 days, and then if I couldn’t tolerate side effects from that, we would stop that and continue to monitor me. She felt like if I did that, then I could feel like I had done all I could for med options. I was hesitant, and she asked if I would consider waiting 6 more weeks, and talk about it again. This would give me time to finish healing, get some weight off, exercise without pain, etc. I also think I was in a mild depression on top of physical side effects, and after being off the Arimidex, and getting past the anesthesia effects, it was like I suddenly just feel “brighter” – for lack of a better word. And have energy, and want to do things again. I have alot of concerns about Tamoxifen, and the research on it is conflicting and confusing. The cancer center I go to is giving a presentation on “Integrative Medicine” later this month, and I plan to go to that, and then make a decision about meds. For me (early dx, stage 1, double mastectomies, low oncotype dx), I am leaning towards no med., and doing everything I can with lifestyle, exercise, diet, supplements to help my body keep strong and prevent recurrance. Depending on your dx, you may want to give Tamoxifen a trial, and then if you can’t tolerate it, then you are at peace in your mind that you did try. You might ask if you can wait a few more weeks before starting the Tamoxifin, and see if a little more time will help your labs get back closer to normal. Either way, whatever choice you make, there are small things you can do to help your body help itself. Eat as much broccoli, kale, quinoa, pumpkin seeds, grape juice, cauliflower, button mushrooms, berries, brussel sprouts and other ‘super foods’ as you can. Keep sugar intake as low as can. Sugar can cause joints to ache even without everything else we are going thru. And if you can possibly make yourself walk 4-5 times a week. Even doing just that for exercise can help to lower risk. (It’s hard to do when you feel bad, I know! My exercise bike was easier when my feet hurt so bad.) I take several supplements, but choosing which to take can be confusing also, and the quality of supplements makes a difference. I will post here later the suggestions given at the presentation this month at my oncologist practice. I am still learning alot, and my decisions about meds may not be appropriate for others, but the lifesytle and diet changes/additions I can make are universal irregardless of meds. There are so many of us going thru this, and having to make tough decisions. Keep asking questions, do what you decide is right for you, don’t second guess yourself but also realize you can change your mind about treatments. Courage. Elizabeth (Beth)

        1. If you are early stage you may want to consider doing the ONCOblot test through an integrative oncologist to see if it comes back negative. If so, you have less than 2 million cancer cells in your body and are virtually cancer free. Then you can do all the dietary, exercise and supplements that can keep you healthy. That is what happened to me with a Stage 2 . I am taking a break from letrozole starting this week after oh, so many side effects, the latest and most distressing being severe pain in my tongue, lips and mouth to where I could barely eat and now, a week later still can’t eat anything with even a sprinkle of pepper or chili, or drink hot tea or eat cold foods. I’d had this before all last year but not as bad, just a sore tongue now and then and thought it was all the lemon in my fresh veggie juices. Now I’m juicing much less and it’s gotten much worse! When I went to read the side effects of letrozole, there it was! These drugs are serious and dangerous. My friend who had Stage 2 a few years ago refused them and her oncologist said they have a 20% improvement in rates of relapses and exercise has a 50% improvement in same – so she’s exercising like crazy. I’m going to do the same because I just can’t handle the lack of libido, muscle aches, dry, itchy eyes, occasional nausea, cataracts (in both eyes in less than a year!), increased stress incontinence, and now this mouth pain. Oh, and I had my hormones tested and yes, my estradiol is non-existent, but guess what? My estrone (the pro-cancerous estrogen) has skyrocketed to very high levels (it was non-existent before letrozole) and my estrogen metabolism has swung 180 degrees to 16-Alpha-hydroxyestrone (inflammatory and pro-cancer), whereas my 16 Alpha before was almost zero now it is 12.7! This isn’t something oncologists test for, but just because your estradiol is zero doesn’t mean you are safe. I feel much less safe now with these dangerous levels of inflammatory estrogen in my body. Waiting for my lipid profile – 25% of women on AI drugs have elevated cholesterol. I mean really ladies, there have to be better solutions, like maybe things like CBD oil, curcumin, beta glucans, mostly veggie diets, etc. WIshing you all the best in your journeys.

    2. Thanks to Nancy for this blog and everyone’s comments. It gave me the insight and strength to stop taking Arimidex. I took it for 5 months and simply could not tolerate the side effects. I actually said to myself that I would rather have the cancer reoccur, than to endure the side effects which included: insomnia, fatigue, “dark” mood irritability, shortness of breath, persistent cough, “heavy” chest, muscle weakness, thinning bones, hair loss, joint aches, vaginal dryness, balance, headache and hot flashes. My oncologist said that 20% of women do not tolerate arimedex. I have been off the AI for 5 months. The side effects starting clearing up almost immediately, and I now feel like “myself” again. The oncologist now suggest Tamoxifen, even though I am 72 years old. I have decided not to take Tamoxifen, mostly because I am more afraid of a stroke than I am of a re-occurrence of cancer. A year ago I had a lumpectomy, complete axial excision, and 12 weeks of radiation. The “chance” of a re-occurrence is 7% ( 4% with tamoxifen). I may be foolish, but I am going with the 7%.
      Thanks to everyone for sharing, it helped a lot with the decision making process. Karen

      1. I, too, was on Arimidex for a little over two years. By the time I finally got off of it, my “dark moods” were beyond dark and I could no longer function at all. I already suffered from depression and took Cymbalta for this, which has worked wonderfully for the last 5+ years, and the Arimidex pushed it off the charts. I’m now taking Exemestane and within a week I was back to feeling like myself again. My pain level dropped too, for the first couple weeks, but that has started to get worse lately, especially seems like cramping in my muscles. At least now that I’m feeling better mentally I have the desire to work out, go for walks, etc. Good luck to all of us!

      2. i was on anatrazol for 6 months …my lump has shrinked more than a third of it’s size…but another lump developed…i stopped it for a month …i was able to overcome the many side effects…i tried to do the FEE…it stands for food, emotions and exercise….but what i couldnt overcome was the lack of libido and the pain during intercouse and post bleeding….well not a lot of blood…so i stopped for a month….and the 2 lumps still there…growing but not fast…then my oncologist prescribed aromasin for 2 months then another 1 month….and i got to see her this 1st week of june. Im worried about the so many side effects of this aromasin….most of them i am able to overcome….but im worried with these 2….1) lack of libido…dryness…vaginal bleeding….and 2) it causes primary cancer…..so at this point…im searching for something that i can substitute when i finally decide to stop taking aromasin….any comments suggestions please….

      3. I thank you thank you thank you for your honesty. When I was 44 I had a smal duct infiltration a lumpectomy and 25 tx of radiation. I was told to take tamoxifen and could not tolerate it. My med dr.(canadian) cut me off of it phew
        …then my oncologist was in an accident and I got another oncologist and Rx was aramidex. It was terrible too and my new doc insisted I take it. Finally I told the pharmacist at Safeway and my medical doc and pharm gal wrote to the drug company. I coughed so hard I could not sleep plus all the other side effects.

        I swam with 32 survivors and lots told me they cut off the drugs and did not tell their doctors as they were so pushy.
        It was expensive then too and now it is free in cancer care. I am now 67 yeah did not take anything until I had a bone metastasis a couple of Yorkers ago and the oncologist did some radiation tx for pain. A fracture in my left rib. It relieved the pain. …But I am now feeling terrible again trying eye estate. I have been to a clinic in Tijuana to build my immune system I have gone 4 times. I take B17 and other supplements and I am fine. I have stage 4 ca now but I do fine with hydromorphone for pain.
        It is too late for chemo but I just can’t tolerate tamoxifen or arimidex or exemestane. I am glad I am not the only one . THANK YOU FOR YOUR HONESTY AS I WAS FEELING CRAZY. I try to stay on a good diet and take herbalife shakes and fish oil and krill oil, low dose daily vitamin and I have a good hubbie and great girlfriends. None of us are getting out of here alive but while I am here I choose not to take any further drugs and just live my life. Thank you so much and other women out there please follow your doctors advice. I am just a hyper sensitive person. I also am a retired palliative care nurse,so I know how to take care of myself. I know the importance of blocking those estrogen receptors too so taking my supplements from a doc trained in Germany and my illegal b17 is keeping me fine for now. Keep a happy attitude if you can…very best to all of you. cancer can be beaten I am glad I don’t have diabetes or even more devastating..ALS. Don’t give up and try to keep happy. Very best Drinda from Canada

      4. I too quit taking the meds. The side affects were terrible. I’m 68 years old and very active… until arimidex then letrozole. I finally weighed out the 15% chance of recurring and decided I’d rather live a full productive life than be a onree couch potatoe! I’m feeling much better now and starting to lose some weight that the meds put on. Seems the meds cause a lot of other problems and then you have to take other meds to counter act the problems and it just goes on and on!! I’m done with the meds and am living life as I intended. Deal with recurrence if it happens….. key word is IF. Good luck to you.

  3. I’m glad I found this blog. I am at the point where I need to make decisions. I had early stage DCIS. Estrogen and Progesterone positive; no lymph node involvement. Had double mastectomy in December. Am awaiting final reconstruction surgery this month. Awaiting Oncotype results which I can’t see why it would come back as being at high risk. I’ve been trying to find research on risks vs benefits of not taking an AI. I’m concerned with all the side effects especially the cardio toxicity since there’s a family history of cardiovascular disease. I don’t understand the need for an AI after a double mastectomy. Research shows that an AI doesn’t extend your life expectancy. I’m just so confused about what’s best. I just can’t see having a good quality of life if I experience all or most of the side effects. I’m active and have a physical job so concerned about daily life. Does anyone know the risks of not taking an AI?

    1. I was stage 1 estrogen positive in 2008. Had a double mastectomy and was cancer free. I did Tamoxifen and Femara and could not tolerate either of them. I decided not to take either. I was also told that my reoccurrence not taking it was 13% and 7% if I did. That was a low percentage rate and I felt either way was low enough for me not to take the AI’s. In 2014 I was diagnosed with stage 4 breast cancer. That was after a double mastectomy. They can never get 100% of the cancer cells. My doctor wants me back on the AI’s but I think in my situation, quality of life is more important than quantity. I am now trying a “trial” oral chemo drug called Iibrance. I also don’t know how much research there is out there that can really say how effective AI’s are. I also believe it’s a personal decision that you have to make.

      1. Sorry to hear that. I would have made the same decision with that low chance of recurrence. I’m considering meeting with a naturopathic oncologist to get an opinion on a natural treatment in place of the AI if that’s possible or least therapy for side effects. I’m torn about which way to proceed. Still waiting for Oncotype results for determination of chemo. I wish I knew someone that went the natural route to get their opinion.

        1. Laurie – I am going to an Integrative Medicine presentation at my oncologist’s office Feb 25th. I still have another appt. in 5 weeks to talk about Tamoxifin with my oncologist – but I could not tolerate Arimidex. Either way, I want to do all possible as far as diet, exercise, supplements, etc. to prevent reoccurrence. I will share whatever beneficial information I get from that meeting.
          Katie – I am so sorry that you are going thru this a second time. I agree with you that it is a decision we each have to make. I wish it was easier, and that there were more sure answers and conclusive treatment options. I hope the librance will work well for you.
          Elizabeth (Beth)

          1. hi beth …. im jaz…can you share about that integrative medicine seminar that you attended….

          2. Hi, Jaz – This Integrative medicine physician works with all types of patients with differing treatments. For example, she helps people needing chemo to deal with nausea, helps them know what foods/supplements to take or avoid with each type of chemo, etc. I did not need chemo, but took Arimedex and couldn’t tolerate side effects. I made appt. with this integrative medicine physician after the seminar, and she looked adjusted some of my supplements I was already taking, and recommended “neutraceutical” (higher grade and regulated) for a couple of them. She had me do the Metagenics 28-day detox program – it did make a huge difference in how I feel, and I lost 14 of the 20 Ibs. I gained on Arimidex. The supplements that I take now are: Vitamin D3 (to keep levels 70-90 per my oncologist and ortho surgeon), K2 100 mcg (for D3 absorption), a high quality Probiotic, Melatonin 5mg w/ B6 10mg, a supplement containing I3C and DIM, and Turmeric. I also take Calcium for my osteopenia –(had it since before my ca). I also avoid sugar (most of the time), and eat all the cruciferous vegetables, berries, etc., that have all the things good for ca prevention. I walk 3-4 miles per day, 6-7 days a week, now that my feet are not painful. I believe that each of us is unique in what we need for treatment, what we can tolerate, and what else our bodies may need in addition to ca prevention. So, this is my routine, and maybe only parts will work for you. I had very early stage 1/grade 1 ER+, PR+, HER – cancer, and had bilateral mastectomies with reconstruction. If you are doing chemo, please check with a physician regarding any supplements while taking chemo to be sure no interactions or interference. I also read “Anticancer” by David Servan, and found it very helpful. He went thru brain cancer twice, but talks a lot about breast ca in his book. He is a scientist & physician, and believes in doing both medical as well as lifestyle/diet interventions. I hope this will be helpful to you. I wish you everything good, and that you will know what is best for you. Courage, Beth

          3. I agree with you Beth. If you’re doing chemo be sure to see a naturopath for recommended supplements because there are some that can interfere with chemo. I am doing chemo, last round this Friday (yea!), and curcumin (turmeric) is one of the supplements I had to stop until after chemo because it can interfere with some of the chemo drugs. The only issues I had/have with chemo is feeling tired due to anemia with decreased Hgb/Hct; heart palpitations on exertion and change in taste for 10-12 days following chemo. I believe because of the supplements I have tolerated chemo fairly well. The doctor and NPs comment each time I go in that I’m not having any of the major complaints that others have. I take a lot of supplements but am willing to do whatever it takes to get me through the chemo. I also do acupuncture and just added a Chinese herbs to help with the anemia. The ND has me on L-glutamine for the digestive tract and I haven’t had any nausea, vomiting, diarrhea; CoQ10, B-complex, adrenal calm, hawthorne to protect the heart, 20mg melatonin for sleep and anti-cancer, and relax max for sleep also. I do have a medical marijuana card just in case I have severe side effects. For the four days I have to take a steroid at the beginning of each round of chemo and for a few days after I also take 1/3 of a dose of an edible with THC otherwise I can not sleep. My oncologist is okay with everything I’m doing.

        2. Laurie,

          The ND Oncologist I saw insisted I start the AI immediately (I had surgery 2 and 1/2 weeks ago for high grade 7.5 cm microinvasive DCIS). She suggested I take 3000 mg curcumin per day, 20 mg melatonin a day and three caps of OsteoPrime Forte twice per day as well as a bunch of other stuff to both mitigate the side effects of the AI and to prevent recurrence. If you get any gems about alternatives to AI’s for prevention of recurrence, I am all ears! I am so not into this standard treatment! I already had a partial mastectomy but refused radiation….and now I am faced with rapid aging due to the AIs. Sad. This disease just sucks!

          1. Hey Mari!
            I saw my ND last week. I had a ful hormone panel done and my bad estrogen is extremely low and the methylated is undetectable. She feels if I can keep estrogen levels low naturally I should be okay without an AI. I had a small 2.0cm tumor and no lymph node involvement. I am avoiding as many environmental xenoestrogens as possible and doing all organic non-gmo foods. I am starting to make all of my own personal care products so they don’t have any harsh chemicals or parabens in them. Along with weight/fat loss I feel very confident in what I’m doing. The most important thing is lowering body fat percent since estrogens love it. If my hormone level increases then I’ll have to reconsider at that time but I’m all for doing whatever is natural to help with side effects. Had first round of chemo on Tuesday. Was extremely tired yesterday but feel 95% today. Taking CoQ10, B complex, 20mg melatonin, and Orthomolecular’s Probono. Will resume curcumin after chemo since it can interfere with some chemo regimens.

          2. Dear Laurie,

            Good luck! You must have a different diagnosis than me. I had high grade DCIS (7.5 cm) and they got it all out. So I am inclined to stick with natural supplements and do testing as I can (though none of the docs ordered it!). I am taking DIM and I3C twice per day which allegedly help to knock down the bad estrogen. I just could NOT take the AI for 5 days never mind 5 years!!! YIPES!

            Thanks for writing back!

            Mari

          3. go to google.com type in essiac tea by rene cassie, it is a dark green page, is supposed to cure all types of cancer, shrink tumors, and prevents cancer. Very interesting reading.

          4. Mari, what are DIM and I3C supplements? I’m going to see a naturopathic oncologist on Monday and would like to talk to him about natural alternatives to AI. Thanks!

          5. They are supposedly natural alternatives to the AI’s. My ND was not so impressed but she leans more heavily on the standard treatment (she might be one of these NDs that really wanted to be an MD but couldn’t get into medical school…The jury is still out on her). At any rate, I am taking 400 mg of the I3C and 200 (I think) of the DIM. We shall see if they work! No side effects really. Nothing like what I was havng with the AI.

            Good luck! Let me know what you find out!

            Mari

          6. Mari

            20 mg of melatonin is such a large amount. Do you take it all at once? I have been only taking 1/2 mg. Does it help with sleep?

          7. I find it incredibly difficult to answer people who ask me questions due to the difficulty of this website….but to the woman who asked about Melatonin: The 20 mg dose is what is needed to upregulate a protective mechanism against DCIS according to the onc ND I saw. I take it at bedtime. It is made by Pure Encapsulations.

          8. I also find it very hard to answer comments on this website. It doesn’t seem to have an easy flow.

          9. Gaye, Sorry you are finding it hard to answer comments. It’s merely because there are getting to be so many, which is good!

        3. Hi Laurie,
          Can you let me know what you decided and how you arrived at that decision.

          I am in the same place where I need to make a decision. My chance of recurrence without HT is about 25% and 16% with HT. Did you ever find a naturopathic oncologist and if so what is their name? Where are you located? I am in NJ and Fla.

          Thanks for the insights.

    2. I was dx Feb 2016 with ILC, stage 1, grade 2, <1 cm, no nodal involvement. I had a lumpectomy and 3 weeks of radiation. Now I am to start AI (Femara). I went through 7 years of menopause HELL from 2006 to 2013. It was so bad at one point I was ready to toss in the towel. I am through it now and feeling great. I have a wonderful quality of life, feel terrific and enjoy life. I am terrified of taking this drug. I just can't face another 5 years of HELL. I found a couple websites that predict your chance of recurring cancer based on type and treatment received. Cancermath.net calculated I have a 2% greater chance of it recurring without AI than with it (7% vs 5%). The other site Predict.nhs.uk predicted a 1% chance of it recurring without AI. I have decided to not take the drug and will tell my oncologist at our next appointment. Has anyone else made a similar decision? Would love your input.

      1. I also chose to not take the ai. I had a lumpectomy..no nodes..er pr positive her2 positive as well. I did 12 weeks of chemo. I full year of herceptin for the her2. The benefits of the ais don’t justify the devastating side effects. They are still way too experimental. I chose quality of life.

      2. Hi, Mav – and all– Since I previously posted here, I did see the Integrative Medicine physician (who is also a pharmacist). She looked over my supplements, and we replaced some with a “neutraceutical” grade – which are more pure/regulated. She is having me do a 28 day detox program to give my system a chance to rest and get ‘reset’ so to speak. (I had 4 surgeries and 5 months of Arimidex in the course of a year.) I am on day 11 of the program, and although it’s not been easy, it hasn’t been bad either. I do feel better and have lost 8 lbs. of the 20+ I had gained. I had not been able to make them budge before this even after being off Arimidex for 5 months. My feet now feel so much better, and over all I feel good – even tho I would love a piece of chocolate! Ha! Here is what I am taking for supplements: Omega 3, Tumeric, Vit D., a Probiotic, “Breast Secure” which has I3C and DIM, Melatonin at night, Magnesium, Vit K-2 (helps vit D absorption). I try to eat several different veggies/fruits a day, and since I’ve been a vegetarian all my life, I use legumes as a source of protein. I also feel good enough to walk and have built up to 3-5 miles, 5-7 days a week. That in itself has helped me not only physically but mentally. It took 5 months to reverse the effects of the 5 months I was on Arimidex. I still have one more visit to see my Oncologist and discuss one more time about taking Tamoxifen, but I have already decided not to go that route at this point. When I asked her what the difference would be with vs without Arimidex/Tamoxifen, she said that they would lower my 10 year recurrence percent by 40%. So 40% of my 12-15% (per my Oncotype) is about 6% less chance. Studies show that doing both exercise and eating fruit/veggies/superfoods can reduce the recurrence by 5%. So I am thinking that 1 percent difference isn’t significant for me. I have also just finished reading a book (Anti Cancer- a New Way of Life) written by David Servan-Schreiber, an MD and a Scientist, who himself had brain cancer twice. He has brought together tons of research results, large and small, and what he has learned and put into practice for himself. It is an interesting book, and includes research on both the physical as well as emotional/mental aspects of ca. One thing that stood out to me was that in one study, the difference in women who had “survived their metastatic cancer for more than ten years at a time when available treatments had little effectiveness,” was “they had very specific ideas about what they would or wouldn’t do to help themselves. They accepted certain treatments and refused others.” He talks about the feeling of “helplessness” as being the one emotion that seems to make the most negative difference. So, I think the fact that we are all questioning what is best for us individually, and are actively participating in making the decisions about our treatments, is a really good thing! I admire and appreciate so much every one on here who is sharing their experiences, struggles, questions and encouragement. It means a lot to me. Courage. ~Beth

        1. Who and where is this integrative Doctor? After nine months, two different med, I finally threw n the towel. I have felt extremely bad, aches, pains, no sleep, 3 hours day..so I just quit. If there is other help out there, please direct me to office. Thanks

          1. Oh, I am so sorry you have had bad side effects. I lasted 5 on my med. for months, but that was it. The doctor I went to I found thru my cancer center, however, I did ‘google’ integrative physicians and found another in Dallas (I am south of Ft. Worth.) You could try that. One lady on this website gave a reference for someone who consults long distance via Skype or call if I remember correctly. There was another lady who recently referenced a website from Cambridge University, and they have a screening tool called Predict, that will give you percentages of long term (5 and 10 years) recurrence chances, and what difference taking adjuvant therapy (meds) would make. That helped to reassure me of my decision to quit – even tho I would have quit either way I believe. Until you can find an Integrative Med. physician in your area, here is what I have ended up with for supplements – all are over the counter and some I was taking prior to my dx: Vit D3 (enough to keep your levels above 50. You can start with 5000-10,000/day for a couple months and then take less once levels are good); Vit K2 100 mcg- helps D3 absorb into cells; Probiotic; turmeric; and a product called Breast Secure – which contains I3C and DIM; Fish Oil; and melatonin at night. There is an National Inst. of Health (NIH) study that shows that Melatonin interferes with both pathways that can lead to breast cancer, while the meds only interfere with one of them. (not very scientific explanation on my part, but the study is online at their website.) I also try to eat cruciferous vegetables every day, keep sugar down, and exercise every day (walk). There was another study I ready that eating superfoods like cruciferous veggies, berries, etc., in combination with exercise everyday can reduce risk by 5%. I hope you can find someone you are comfortable with and that will encourage you and help you to know what will work for you. We are each different in our needs, risks, tolerance, and side effects. But we all need support and encouragement and reassurance that we are doing what works and is best for us. Don’t give up. You could start with some supplements now, until you can get an appt., and then see how to adjust them. Some of them may also help your pain levels. Hugs and courage – Beth

          2. Hey Beth and Gloria! If you’re interested in a naturopathic oncologist there is a leading NO that you can access online. She is tops in her field. A great way to go. She can help with protocol if not taking an AI and can help with side effects if you do take an AI. She is Dr. Heather Paulson and can be found at drheatherpaulson.com.

          3. Thank you so much! I will check on it. My doctor was a pharmacist who works with the surgery center, but she is about an hour + from me. She was good, but, I would like to have an integrative medicine physician long term. I appreciate your sharing that information. 🙂 Beth

          4. I am also now taking exemestane but only one tablet every three days. I also take a host of other stuff and think I will add the CBD. I am giving myself 10 years on all of these supplements, refraining completely from alcohol, most carbs, and mostly eating a raw, living diet. Once I turn 71 (ten more years) I am going to start drinking again as I miss my Guinness and my red wine! I feel like breast cancer was the gift that keeps on giving because I lost 40 lbs since being diagnosed, improved my health status tremendously and feel and look ten years younger. No more osteoarthritis pain, better sleep, and just overall MUCH healthier. I have seen recommendations for NDs and integrative physicians/providers and I think that is fantastic! I personally do not trust NDs that are overweight…as it demonstrates a profound lack of knowledge about what the body needs to be healthy. Excess weight is NOT something the body needs to fight cancer and there is a much higher incidence of breast cancer in women who are obese….I was one of them! Good luck ladies! Let’s try to weather this horrible month of October where there is so much money being raised in the name of breast cancer….but none of it goes to integrative research or plant based remedies and MOST of it goes to corporations and administration of corporate interests.

      3. I was Dx. with stage 1 breast cancer in March 2016 and had a double Mastectomy with reconstruction. My oncologist started me on Femara July 1st. I feel awful, tired ,temps, achy joint pain. I am so torn whether to stay on it or just stop it. If I ask him about it he will want me to stay on it or change to something else. I have always been so active and I don’t even feel like doing the fun stuff I always enjoyed. I have no family history or have never taken estrogen. I went through the change about 10 years age with no problems.I would appreciate any info.

        1. Kenda, I declined to take AI and my oncologist accepted my decision. Instead I am seeing a naturopathic oncologist who has me taking flax seeds, DIM, grape seed extract, Vitamin D3, mushroom powder, lots of exercise, a healthy diet and periodic fasting. Sounds like a lot, but I feet great and everything I’m taking/doing boosts my body’s ability to fight cancer. Everyone develops cancer cells all the time, but our bodies recognize them and take them out.

          1. I had double mastectomy in December. Just had follow-up reconstruction two weeks ago because I wasn’t happy with the way the implants settled. I’ve heard of the mammapath test but it’s not typical protocol because studies haven’t shown it’s better than oncotype so most oncologists don’t use it. Though the research is promising and I think it’ll become more standard in next couple years. I was going to have the test done because my oncotype was intermediate but I decided to do chemo anyway. I opted not take the AI and my oncologist wasn’t too concerned since I’m being followed by a naturopathic oncologist. I had a circulating tumor cell blood test done and my number was really low and as long as it stays low with checking it every 6 months then the naturopath sees no reason to take an AI cause risks/side effects don’t outweigh the benefits. I take CoQ10, turmeric, melatonin, D3, flax seed and probiotic. I am also doing high dose vitamin C infusions monthly. Research has shown high dose vit c can kill cancer cells. The only way I would reconsider an AI is if my estrogen levels increase to level of concern. I am having a hormone panel done annually. I eat 99% organic, use products that are petroleum, phalate, and chemical free; and use essential oils. Luckily I live in CA so medical cannabis is available and I do a THC infused ointment for any pain and I use edibles to help me sleep. Both work very well.

        2. I stopped that Femara after 8 weeks of feeling so bad. That was in Sept. I started feeling like myself after being off of it a week later. At the end of Aug. I had my last Surgery and I am feeling very good. Now my oncologist wants me to try Tomoxifen ,and I want no part of it . If I have had a double mastectomy! What are my chances of cancer coming back? I love this website and have taken notes on Nautropathic oncologist and taking supplements. Feeling scared to take it and scared not to.

      4. I was on Letrozole for a month following my lymphectomy and before I had radiation. The side effects were so awful, especially the back pain, that I called my oncologist and ask to go off it for a week before and during radiation. I have my last week of radiation next week and I’ve decided not to go on any aromatase inhibitors. For me it is about quality of life not the extra 5% to 7% less chance of recurrence.

      5. I recently stopped Femara after taking it from Dec 2016 to Sept 11 2016. I had a partial mastectomy tumor removal in July 2015. Lymph nodes removed with no spread and clean margins. I had 33 radiation treatments. I was prescribed chemo but declined. At my 6 month after radiation mammogram I was clear. I am using natural supplements.

    3. there is a web site called predict. You input your data and it gives you survival. It is accepted by the medical community in the UK, and is highly reliable for early stage BC.

      1. Thanks Anne. I went to the website and entered my info. I was at 98% survival at 5 years and 94% without any further adjunct therapies. If I did anything else therapy wise you could barely see the line increase for percentage points. Makes me feel confident in my decisions.

      2. I just did mine on that Predict site and was happy to see that even with a 72 mm sized DCIS tumor (excised with clear margins) and HER 2 + and ER + that 92 percent of women are alive at 5 years and 79 percent at 10 years. So I can live with those odds! Plus I believe that all of the supplements, dietary changes, and upping my exercise adds to getting me into the 79% cohort! Makes me comfortable with my choices and I appreciate your sharing this, Anne! Here is the website Anne pointed me to…. http://www.predict.nhs.uk/predict_v2.0.html

        1. Thank you so much for the link (Predict). It was reassuring, and from reading the information on the site, appears it may be a better predictor than the Oncotype DX. It not only predicts survival rates based on your dx, but also states how many in 100 women would have a different outcome if had used adjuvant therapy. I really appreciate you sharing this site, and no longer have that small question in the back of my mind as to whether I should have continued AI in spite of the horrible side effects I experienced. Without the AI, I am not depressed, I feel good, no pain, can exercise every day, and make better decisions about what I eat and keep weight off. (The AI would make a difference in 1 out of 100 women at 10 years for my results.)

      3. I just looked at the manufacturers website for Aromasin (exemestane) and learned this: After a single dose of exemestane 25 mg, the maximal suppression of circulating estrogens occurred 2 to 3 days after dosing and persisted for 4 to 5 days.
        So now I am taking one every 3 days. I think that is more than enough….Who needs all that drug when it stays in the body so long!??

        Mari

        1. I remember looking up the half life of Arimidex, and I believe it is 55 hours. So, if you take it everyday, your actual dose would be higher than what the rx is for. I also looked up the half life of Fosamax (to prevent bone loss) is 10 years! Another med to carefully consider before taking.

  4. Kathleen & All – I can’t find the reply thread, but Kathleen suggested Claritin for bone pain from femara/letrozole and with nothing to lose I started it 4 days ago. I can’t say absolutely that it’s the claritin but I have seen an improvement. Sure it could be that it’s finally getting out of my system, but it could also be the help of Claritin. The pain isn’t gone but my fingers are definitely showing signs of improvement which gives me cause to celebrate. Reducing the pain of course also helps the “head” which in turn helps cope with the pain and around and around we go. So I’ll celebrate the small steps and thank you so much for the tip. Maybe some of the other ladies on here want to try it. Let us know your results if you do.

    Now I’ve got to start Tamoxifen and at least give it a chance 🙁

    Thanks Kathleen <3

    1. Hi all,

      I’ve been on exemestane for 9 months and I’m having the hardest time with achy joints and swollen hands/feet. My oncologist prescribed Celebrex which is for arthritis and I can tell a difference. The pain is not completely gone but it has helped it tremendously. I’m still in pain everyday and feel like I’m 100 yrs old. I’m only 48 and should not feel like this. I’m seriously considering quit taking this med because it’s effecting my home & work life. I’m not sure if it’s really worth it. I can’t remember what the number was on my Oncotype test but I do remember it was low. This is my second time battling cancer and not sure if I can go for round 3. I was dx when I was 19 with Hodgkin and had chemo & radiation. Then in 2015 was dx with breast cancer which I had a bilateral mastectomy with immediate reconstruction diep flap method. Just so confused and don’t know what to do.

  5. Wonderful, Beth! I’m so glad you’re finding some relief.

    Without the Claritin I don’t think that I could persist in taking the Arimidex. I have about 8 more months to go for the 5 years.

    1. Hi – I am really interested in the claritin (is it over the counter?) – I will check with my family physician – I am on the highest dosage of Reactin (prescription) that I take daily due to allergies along with my Al – I am having lots of pain and getting more crippling by the day, but I don’t know if half of it is by struggling to get back in to active exercise, carrying a to heavy of a case or what – I do eat a lot of vegetables but like to eat everything else as well – weight gain is a little but I chalk it up to being inactive. I gave up work recently as I was terribly fatigued (working long hours w/o good enough breaks) so thought I would try to get back to active life, but I am sorer than I ever have been in my life. More sleep (now 10+ hours) has helped give lighter moods. I am wondering if the claritin will due double duty for both the joint aches and my allergies?

  6. How does the doctor know that arimidix is effective? Are there blood tests that measure estrogen ? What happens if you take arimidix every 3 days ,rather than daily and have no ill effects?

    1. I am taking arimidix every 3 days also..I had stopped it because of trigger fingers but now I am trying it again every few days insead of everyday……my doctors said the studies show it must be taken everyday….I said if it stays in your system for about 50 hours, why cant I take it every other day?……..I dont think they like you to ask them any questions…they are too busy and dont have time to explain anything…I usually have to look up information on my own or go to my primary doctor and ask him and he is always so nice and tries to help me……^.^

  7. Hello everyone. I too have a low Oncotype score, but MO says I have to take Arimidex every day. Did that for about 2 weeks and my hair started falling out and voice became hoarse with insomnia a real issue. Headaches….The MO claims Arimidex will lower reoccurrence by 1percent, yes, so when I asked about taking it every other day, I was met with reproach. I asked about half life of the drug and she was miffed that she had to reply but still insisted I take it every day. My conclusion is Arimidex is “fairly new”. Big Pharma needs us to all take the same dosage for the same length of time so they can make their claims after 30 years of it being on the market. I have 2 joint replacements to think about losing due to bone loss. The MO stated that rarely happens, well watch it be me. At this point, I will consider every 3 days Arimidex and go with melatonin and some of the other natural AIs out there. Also consider researching Beta Glucan girls. So has any one insisted on an E2 level prior to taking anything? They say they don’t want to make us pin cushions with blood draws, but who cares if it tells us something……

    1. I had my Estridiol done pre-Arimidex, after a couple months on Arimidex daily, and again after I had quit taking it for about 3 months. All results were exactly the same. Not sure how minutely they can measure, but there was no change in mine either way. (I was 55 when dx last year.) I am no longer taking Arimidex due to side effects and after doing a lot of reading about it. I am choosing to use diet/lifestyle/supplements to reduce the risk of recurrence. I think we all need to keep asking questions, know what we are putting into our bodies, and be part of the decision making. I am not against medications in general, and they definitely have a place in treatments and healing, but in nursing we are taught that patients have every right to ask and receive answers and to be involved in their treatment choices. Keep asking. I will look up Beta Glucan. Thank you. Beth

      1. it takes more than 2 weeks to get loaded….I started with one every week then went to 2 a week and then 3 until I got used to this drug…….I took it for 1 1/2 years and stopped it due to trigger fingers…..I then tried tamox. and estremestere but they were worse…..I then took a break and my oncologist said even though my DX onco test was 2 my estrogen was high so there is a chance of recurrence….so after 4 months off I just started again the same way…if this isnt good again I will just not take it at all and take my chances……I also have mild breast pain most days that no doctor can explain other than nerve damage from surgery or drinking coffee…who knows……renee ^.^

        1. My oncotype score was 20. I will probably be starting chemo in the next 6-8 weeks but when it comes to the AIs I am not going to take any of them. I am going to a naturopathic oncologist on Monday and get recommendations on what to do to inhibit estrogen naturally and not completely because you still need some “good” estrogen for the health of other organs and there is a history of heart disease in my family which scares me more than the possibility of recurrence. I have been doing a lot of research on the topic and others have been successfully doing it naturally and one person’s blog that I follow has been cancer free 11 years after chemo and natural AIs with lifestyle changes. Everyone in my cancer support group has done everything the doctors recommend and the side effects they discuss really scare me. Luckily with lab work I can monitor the hormones and make changes as needed. If you believe in the choices you make, not matter which way you go, and do it 100%, it’ll be a better outcome.

          1. Hi Laurie and everyone. I am so happy to find this site. I am 51. I am highly er/pr+ , Her2 -. I had a single mastectomy and had 2 lymph nodes involved out of 3. diagnosed at stage 2b and grade 3. They did not do an Onotype. I finished 5 months of AC/T (had every side effect and reaction possible) and 6 weeks of radiation. Then a regimen of monthly Lupron shots to suppress ovaries. Had 5 shots to date. Not a piece of cake but warily made it through one day at a time. I thought the agony of all difficult decisions were over. I could take a look back over my shoulder and say” what the heck just happened”, but a at least it was behind me and life was getting ready for me again. (Even knowing I have another surgery to remove the other breast with recon this April ahead of me). I started anastrozole a month after starting radiation and immediately after a few days the side effects started and for a duration of 6 weeks the side effects became so debilitating that I was practically bedridden from joint pain/muscle ache, having difficulty with my vision. Cognitively , I was having difficulty forming words and a cloud of depression that was medically induced from taking this drug, just to name a few. Other protocol suggested that would be extremely healthy for me that was recommended at this time: EXERSICE, EAT ORGANICALLY and of course HAVE A POSITIVE ATTITUDE!!! Great in theory! I had trouble walking to get to the bathroom. Couldn’t take the cap off the milk for my decaf coffee just to name a few and I AM THINkiNG, I AM SUPPOSE TO BE EXERCISING! I called my oncologist and said i could not/would not live like this. So they took me off it. Within 1 day my joints were feeling 75% better, 2-3 days later joint improve about 20% more, depression lifted within the week and I started running building up to 4 miles by the end of the following week. So it’s been about a month since I stopped the Anastrozole. I feel so good. Still some residual effects with neuropathy from last dose of taxol but tolerable. So, big question is.. Do I try one of the other aromatise inhibitors? I cringe at the thought of it yet I feel like I’m losing my safety net. Does anyone know the actual percentages given for recurrance by taking an aromatise inhibitor? I’m seriously thinking of going to a Naturopathic doc. Any feedback would be greatly appreciated!!

          2. Robin – At the oncology practice where my doctor is, they have a pharmacist who is also trained in integrative medicine. She works with patients with nutrition needs while they are on chemo/radiation etc., and also works with individuals to come up with a plan for nutrition/supplements for their specific dx., whether a patient is taking AIs or other meds. or not. I am already taking supplements, since I only made it 5 months on Arimidex and then quit due to side effects. I have made an appt. for later this month to see what she advises for me. I think there is alot we can do with nutrition, exercise, supplements, but yes, that is very difficult when on meds that cause pain and make you depressed. Has taken about 4 months for my side effects to be about resolved, and I am now back to walking 4-6 miles/day and feel good and my mood is alot ‘brighter.’ One of the reasons I quit when I did was because I had my last surgery coming up and felt I needed to be in the best condition mentally and physically before that. I think you are right to consider every option out there and then make the choice that is best for you. And I am glad you are able to run again – I read a great article about some research that is showing how and why exercise lowers risk for recurrence. So you are already lowering your risk right there. And I will be happy to share what is recommended for me for supplements, because these could be taken whether you take a med or not. Courage. Beth

          3. Hi Robin! I have been to a naturopath that specializes in oncology. I did a google search for naturopathic oncology and then found someone in my area that did a one year internship at a cancer center and belongs to the national organization for naturopathic oncology and has been in practice more than 10 years. I love her. I thought the $250 initial consultation was well worth the 1.5 hours she spent with me going over everything I was having a problem with and my concerns on taking an AI. Within the first night of taking the supplements she recommended I was sleeping better and no more restless legs at night. She agrees that we can do something alternative in place of taking an AI or helping with side effects if I decided to go that route which at this point I’m not. I would rather have 10 years of a high quality of life then 15 years being miserable off and on. I will be working with her and an acupuncturist to help me get through the chemo that starts at end of month. If anyone is considering supplements please have a professional make recommendations. It’s important that what you take is okay with your full medical history and any current meds or supplements. Also a naturopath will monitor lab work to make sure that there is no harm to your body and total health. My naturopath reviewed the chemo regimen I will be on and made sure none of the supplements would interfere with that treatment. Cancer patients need higher amounts of certain vitamins and minerals for overall health. Secondly, if you haven’t already read it I recommend “Breast Cancer Beyond Convention”. I got it at Amazon for a decent price. You may find it at your local library. Remember whatever decision you make is right for you but not necessarily for someone else. That’s why it’s good to weigh all possibilities and get as much info as possible before making decisions. With the Oncotype test the one downside is they only give you percentages based on tamoxifen only or tamoxifen with chemo. I wanted to have a newer test, mammaprint, done that doesn’t take any of that into consideration but oncologist didn’t feel it has been studied enough to know if it’s reliable though other oncologist do use it. Has anyone had the mammaprint test done?

      2. Hi Elizabeth, I too have opted for quality of life over possible extension of a life half-lived. After 2.5 years on letrozole and fruitless discussions with my oncologist, I went off the letrozole. I feel better than I have in years. I think one of the most effective ways of keeping estrogen from being produced is to lose body fat, which is impossible on ai’s– because they cause weight gain, make it impossible to exercise, and if you are like me you can break your bones doing simple household tasks. This is rambling, sorry.

          1. Mary Ellen, as it happens, today is my 3 year anniversary of my diagnosis w stage IV bc. I started being able to walk normally after a month. I am now a month and a half off the drugs, I am sleeping better, I am able walk to the bathroom in a timely manner 🙂

            This wasn’t an easy decision. But I could not imagine staying on this drug in misery only to find out after my next scan that the cancer has returned…. for me, the costs out weighed the benefits. I developed trigger fingers, I broke my ribs and my shoulders doing menial household chores, and so the impact of the drug was not good. I feel better, much better. Trigger finger gone, range of motion returning.

          2. Thanks EM I stopped a few weeks ago I was having similar issues also my blood work values going up for kidneys doctor finally agreed to take me off. Going to recheck in a few months. Feeling a little better but still a lot of join pain some days. I guess I am wondering do u ever feel yourself again or is some of this permanent damage and will never go away. The doctors do not seem to have the answers . Congratulations on your 3 year mark I know it is not an easy road.

          3. Hi Mary Ellen, I have only been off since the end of January and I feel more like myself, although I can barely move my arms. After having been on AIs for 2 years, I had put on some weight. That weight is starting to come off, I hope my shoulders improve, my feet and ankles are doing well– not the old me, though. I don’t know if I will ever be the same again, but if I am able to go for walks, etc… it is a victory.

        1. Hi, Em – I am so glad you are feeling much better and are comfortable in your decision. Both are important. The one thing that has been recommended to me by my ortho surgeon (since long before ca), is to keep my Vit D levels high since I have had some osteopenia for years. He wants me to keep my level well above 50. (Right now I am around 70.) He also recommends taking K2 with the Vit D to help with absorption. Vit D also has a role in prevention of recurrence of ca. Your family physician could monitor your level if your oncologist is not already monitoring it, and help you know what doses to take to achieve and then maintain your level. Courage. Beth 🙂

          1. Hi Elizabeth, Thanks for the info. I take mushrooms and vitamin D. If you haven’t looked into Turkey Tail, you should. You are lucky to have a dr. who works with you, mine is not interested in my health goals. I know you are right about exercise and recurrence, which is the irony of AIs, they make it almost impossible to move, they cause weight gain, and if body fat is my main producer of estrogen, I have had an oophorectomy and hysterectomy, then I wonder just how efficacious these drugs are with a cancer that is only somewhat estrogen responsive. You have my utmost respect, Beth.

        2. Thank you, EM. I will check into that. Are you taking Fosamax for your bones? After a certain point, it can work opposite of what is intended. There is a new twice a year injection my oncologist suggested that can help with bones (forgetting the name….). It is supposed to help with bones as well as have some ca preventative properties. I have not researched it myself yet, but that might be an option? I just passed my 1 year since dx last week (11th). I thought I would feel like celebrating, but instead it was a week of flashbacks and re-living roller-coaster emotions. But, this week I feel a lot better, and even tho I know that the more surface, difficult emotions will continue to bubble up and over sometimes, way down deep I am ok. I appreciate you and every one who has taken the time to share on this site.

          1. Hi Beth, I am getting Zometa every six months. My bone mets have been healing themselves, but I don’t know if everyone’s does that.

  8. I’m so glad I found this blog today. Two days ago I made the decision to take a break from Arimidex after 2.5 years of joint, back pain, 20lb weight gain and fatigue that has become so bad I just want to sleep or do nothing about every other day. I was diagnosed with stage 1 invasive ductal carcinoma Jan 2012. No lymph nodes affected, lumpectomy and 33 radiation treatments. I was so conflicted about starting Arimidex but my oncologist insisted and3 months after my last radiation treatment I gave in. My ONCO test is 23% without and 15% with adjunct therapy. I actually retired early at 58 due to fatigue, inability to concentrate, back pain, lack of interest in my 30 year career. At the time I did not connect to Arimidex. I’ve taken Claritin for years due to allergies so it was interesting to see above it helped others although obviously not me. My aunt had breast cancer and took Tamoxafen for 5 years. She had a recurrence in same breast within ten years and had a mastectomy. Now she is on Avista at 79 years old. It’s all very disheartening as there are no clear answers other than MOs mandating one of these drugs for all BC survivors.

  9. I just found your blog and am happy I did. I have tried arimidex, tamoxifen, and now aromasen. I have been taking them since June 2013. I’m done. I cannot take the joint pain any longer and last Sunday, March 6th when I went to bed, I just said NO MORE. I’m 3 days now without (nervous as heck) but feel like my body just needs a break. I see my oncologist in April so maybe 2 months break and then I’ll talk to her about options. I was stage 2, no node involvement Invasive Lobular in left breast. Oncotype score was only 11%. I had a bilateral mastectomy with tram flap reconstruction using abdominal area. I never had chemo or radiation.

    Each day I feel a little bit better. Crossing my fingers here…

    1. don’t cross your fingers be proactive- consult Dr Henrique IWHC for dendritic vaccine- it disappeared a tumor and shrank another in me. Immunotherapy is the future. I am also recommending .Cannabidiol for breast cancer survivors on AI- we are planning to study women in Israel ( illegal to the study in USA!)- it prevents bone loss, boosts immune function, restores sleep and treats anxiety- I am in Israel now returning June to open 3 dispensaries with pharmacological cannabinol- also launching organization to fund intelligent patient driven research for women- Phuli Cohan MD

  10. Dear Nancy,
    I just found your blog and I want to tell you that I very much understand how you felt and admire that you are bringing voice to such valid concerns. Briefly, I am a nurse practitioner, with Stage 2-B breast cancer diagnosed in 2007. After chemo, I started tamoxifen. My oncologist suggested a 2-3 year course then switching to an aromatase inhibitor for a total of 5 years. However, I knew based on my own research that I wouldn’t feel comfortable on any AI’s. I was only 51, athletic and wanted to preserve my quality of life including sexual response which is something no woman should be afraid to include in her list of concerns to her physician.
    I am grateful to have an oncologist who understands that I don’t want to develop arthralgias, osteopenia/osteoporosis, chronic vaginal dryness, decreased libido and the other associated and common side effects. I am grateful to have survived cancer, but I don’t want to be miserable as a result of treatment. My oncologist and I looked at the research and the difference between tamoxifen and aromatase inhibitors on recurrence of breast cancer in women with my kind of breast cancer (invasive ductal-pretty much garden variety) is statisitically significant, but by a very small margin. In terms of absolute risk, there is about a 2-3% greater chance of recurrence on tamoxifen vs. AI. I happily accept that risk. With her blessing, I also see a gyn who specializes in testosterone replacement in menopausal women to boost libido. My onc doesn’t believe there is any risk in taking testosterone. She also is very comfortable with the use of vaginal estrogen, which has helped me a great deal.
    Another oncologist that I consulted with, recommended that I take AI’s for 10 years, consider having my ovaries removed, have Zometa infusions every 3 months, etc. Alarmed, I asked her why she was suggesting such an aggressive treatment plan and she said, “for liability reasons”. So, some doctors really fear litigation (don’t blame them) in the event of recurrence.
    We have to be able to ask all the important questions of the people who care for us. If we feel uncomfortable having that conversation, we need a different health care provider. Women can survive breast cancer and still maintain their quality of life, but there must be an honest discussion about every aspect of the treatment plan and all effects of doing or NOT doing a proposed treatment.
    I hope everyone affected by this disease feels able to get the answers they need in order to make the best decisions for themselves with respect to their own situations.

    1. Thank you so much for your post! I appreciate you sharing your experience and concerns and the answers you found. Did you take tamoxifen? If so, for how long and what side effects. I took arimidex for 5 months and quit due to the side effects. I also don’t believe that for me the small difference in risk warrants the horrible side effects. I am not planning on taking tamoxifen either- although that is being recommended. I was very early stage 1, and had bilateral mastectomies with reconstruction. I am taking supplements recommended by integrative medicine physician and also walk/exercise 6-7 days/week and eat 5+ fruits/vegetables to reduce risk of recurrence . It took nearly 5 months to reverse all side effects and I am unwilling to go thru that again. Thanks. Beth

  11. Well, I’m so blessed I found your blog… I was DX is July 2015 with ILC Stage 3a, Grade 2… I had TCHP, BMX, and Radiation. The doctors, from day one, were pushing Tamoxifen. I didn’t want to do the other treatments, but felt at peace doing them. I have never had any peace whatsoever about Tamoxifen. I had terrible side effects from chemo, and weathered them. I had radiation fatigue that was not pleasant, but doable. When I had my Bilateral Mastectomy, it was smooth sailing. My onc flirted with the idea of an AI, since my bloodwork came back as menopause. However, my estradiol number was considered too high to start an AI, which I didn’t want to take either. She finally got to a point where she asked if I would take Tamoxifen for 3 moths to bring that estradiol number down. My husband asked me to try it, and I could quit if it was bad. He;s been behind me 100% on not taking Tamoxifen, but since he asked, I tried it. It was a week of absolute hell. I had bizarre side effects that nearly landed me it in the hospital, so no more drugs… In the interim, I saw the Integrative Oncologist at the cancer center where I’m treated. He was VERY happy wih the list of supplements I’m taking to keep my estrogen down naturally, and agreed with all I was doing. However, he said, remember, that diet and exercise have been proven as effective as Tamoxifen at reducing recurrence, but they shouldn’t be used in place of the established protocol. i.e. Tamoxifen. In other words, I can’t tell you to only do diet, exercise, and supps because I would lose my job.

    All of that said, I’m not planning to do any drugs, and stick with diet, exercise, and supplements for now. I need to have a life with my family and not a pain riddled existence taking all kinds of drugs to offset the side effects of something that is supposed to help me, but has no guarantee… That’s just me, though… I’ve met several women who’ve done the same thing and they are many years out with no recurrence, and they had much more dire prognosis than I do.

    1. I chose not to participate in the Als. I took a natural aromatase for 3 months and the pain I was suffering with in my joints was unbelievable, I’m tired of being poked and prodded. I have type 1 diabetes as well as osteoarthritis in my legs. To add to that pain was more than I am willing to do. My Oncologists and surgeon don’t like my decision, but they aren’t the ones living with the effects. I’m 60 years old, the cancer was contained and hadn’t spread, there isn’t cancer in my immediate family, so I believe I am a good candidate for a it not coming back. If it does, I will not do chemo again. I’m changing my lifestyle and food intake. Alana, what supplements are you taking to keep your estrogen down?

      1. Hi Joey,
        I take Smokey Mountain Brand DIM, and Calcium d-glucarate… Those seem to work for me, although they aren’t for everyone… I’ll know more in two weeks when I go for blood work, we’ll see if the estradiol # is coming down yet.

      2. Dear Joey,

        I also have T1D and breast cancer! So frustrating as we cannot totally control when our BGs go up and does THAT make the cancer cells thrive even more? I can tell you for a fact that when I began taking high quality curcumin 1500 mg twice per day, my osteoarthritis pain almost disappeared completely! I was so surprised! I took this for the positive effects against breast cancer but it totally “cured” my OA. I also was miserable on the AI’s and stopped them after a week. And I am ER+ and PR- and HER 2 markedly positive. So onward!

        1. Hi Mari,

          Would you mind sharing the brand/website where you got the high quality curcumin? I’ve been reading a lot about it. Found an informative site that has no brand affiliation: https://examine.com/supplements/curcumin/ But they don’t recommend a brand/source and I haven’t found one yet that is suggestive of proper absorption.

          I’m taking tamoxifen since February having quit Letrozole but the pain came back with a bang after 2 months. I was sure tamoxifen wouldn’t cause the same bone pain. So frustrated but not yet willing to give up the meds if I can curb the pain somehow.

          Thanks for any info and advice!

          1. Hello Beth,

            I get all of my supplements from Emerson Ecologics. They have “gold” rated supplements which have achieved a certain degree of quality assurance. The Tumeric I take is an Extract by Vital Nutrients. It is 740 mg. The Melatonin (20 mg) is from Pure Encapsulations. I am on DOZENS of supplements but I get most 1/2 off because I am a Medical Provider myself (Family Nurse Practitioner). If you have a friend that is a physician or NP ask them to order them for you for the discount. Shipping is pricey tough but most of their products are high quality.

            Their website is http://www.emersonecologics.com Good luck! Mari

    2. Hi Alana,
      Can you tell me the list of supplements you are taking and what do you measure to ensure that your estrogen levels are low? Is ther any other test you have done as a way of monitoring?

  12. I am one of those who has declined the aromatase inhibitors my MO wanted me to take after a lumpectomy and radiation last fall. I’m just freaked about the possible side effects — I’ve got an artificial hip that needs all the bone strength I can muster (fortunately, bone density checked out as being *very* good — thus far anyway), and things that don’t bother other people (e.g., hair coloring) have caused me serious problems. I also have psoriatic arthritis — so, to willingly start taking an AI with any number of unknowns and potential for new, possibly more debilitating problems seems both counterproductive and seriously unintuitive (or is that anti-intuitive …). I am heartened to see that others are declining the AI route in favor of complementary therapies/approaches. I’m just starting down that road; increased my exercise this winter and switched to organic foods; cut almost 100% back on sugar/white flour goodies. Adding turmeric, broccoli sprouts to food; taking astralagus supplements. But I need to be organized about this so need to find a naturopath/integrative oncology-type person/center.

    Anyway, my next step will be to have several checkups (RO, MO, breast surgeon) in 3 weeks to see how I’m doing … kind of nervous about that; they will be the first since my treatment. And of course I’m looking for information all over — this blog is one place; http://www.community.breastcancer.org is another … stumbled across the article at the following link today and thought some of you might be interested too: (wish I could make it a clickable link but don’t know how). Best wishes to all!

  13. I am a women’s health physician currently living in Israel where I have been doing sabbatical on Cannabis medicine. You should know that Israel is conducting double blind controlled studies on Cannabis medicine and it will be playing an important role for breast cancer survivors.

    It is the ideal support for women, on or off AI, as it prevents bone loss, improves sleep, reduces breast cancer cells (in vitro studies), boosts immune function, and reduces anxiety.

    I hope to start a group to raise awareness and funding for clinical trials. Please contact me if interested in being part of this dream.

    I too am a breast cancer survivors who is not on AI.

    1. I have just had a lumpectomy March 2016 grade 2 cancer, about to start radiation treatment for the next 3 weeks then move on to Letrozole for the next 5 years, after reading about the side effects of the drug I really do not want to take it like lots of women on this site ( which Iam very happy to have found) when you think 7% chance of reoccurrence with Letrozole 10% reoccurrence without…the extra 3% against the side effects of these inhibitors seems worthwhile. I’m interested in Cannibis medicine and would very much like
      Philip Cohan to get in touch with me (email)

    2. Phuli
      I had lumpectomy and radiation last July 2015. Am very interested in cannabis medicine for breast cancer.
      Elizabeth

    3. Would love to learn more. Need to make a decision soon about AI’s. Am her2 positive and 90 percent Er positive but have not been able to take most drugs.

      1. Just back from Israel- would love to help start a women’s collective to take the reins on better breast cancer help/ advise/research for women- the breast cancer arena is not working and likely harming women more than helping!

    4. I am very interested in your research Phuli, as I have been suffering from insomnia and anxiety on Anastrozole. I know that this is drug induced as my oncologist suggested a break to check and immediately my sleep improved and I did not feel constant panic. My oncologist said not to break from AIs for longer than 6 weeks, so I started on another AI yesterday (Exemestane) at her suggestion, should I find that it was indeed the drug that caused my symptoms. I am not confident that the insomnia and anxiety will be less on Exemestane, but do not wish to discontinue AIs. I am very interested in the research on Cannabidiol, and have a good understanding of mainstream science having trained in Nutrition and Dietetics. I cannot work unless I am in very good health in mind and body. I love my work and have a very supportive team around me who appreciate my role enormously so I do not want to have to give it up in order to get through the next 5 years. My cancer was of the left breast; oestrogen positive, grade 3 tumour with 2 malignant intra-mammorary nodes with no further +ve nodes after total node clearance. I had a lumpectomy followed by 6 rounds of TAC chemo and 4 weeks of radio. I started on Anastrozole beginning of October 2015. I overcame bad joint pain and carpel tunnel syndrome of right hand all through exercise and have lost 2 stone in weight. However even with meditation, I have been unable to overcome the insomnia and anxiety caused by Anastrozole.

      Many thanks to everyone for all the information you have generously and openheartedly offered to this site.

  14. For anyone still trying to tolerate AIs I learned something very interesting at my last cancer support group meeting. The AIs most women take are generic brands cause that’s what insurance will cover. The active ingredient in all generics is the same but the inactive ingredients are not. One person tried a few different ones and was able to tolerate the one manufactured in Israel. Though that sounds promising at this point I am still not going to go the AI route. Just had my second round of chemo so It’ll be another 6-8 weeks before I get off all my supplements for chemo support then I’ll move on to whatever the ND recommends in place of AI. I continue to watch my diet closely. With the elimination of 95-100% of sugars, added sugars, white flour and processed foods I have been able to lose 20 pounds. I walk 1 mile 5x daily most days. Eat organic, non GMO, free range foods.

    Thank goodness for this blog. I enjoy all the comments and helpful ideas. The first place where I see others making the same choices. Not one woman in my cancer support group has declined the AI. They all do exactly what the MO tells them to do.

    1. Hi Laurie, I declined to start AI after finishing radiation therapy. I was supposed to take Letrozole for 5 years, but after reading all the comments on numerous support sites about s/es I can’t do it. So I went to a naturopathic oncologist, he reviewed my pathology report and we talked about alternatives to taking AI. So now I am on supplements to gently reduce estrogen and boost immunity: principally DIM, grape seed extract, a mushroom powder, flax seeds, vitamin D3. Plus I have upped the brassicas in my diet: broccoli, cauliflower, cabbage, brussels sprouts. Hope this helps.

      1. Mav,

        How much DIM do you take? I am also taking DIM and I3C twice per day in lieu of AI’s. Hope it works! I had a big whack of DCIS 7.5 cm removed in March and it had a couple of cells of microinvasion and was high grade in places. Anyhow….despite the 50% chance of recurrence, I am not doing rads or AIs. Good luck to you! What a trip this has been!
        M

        1. I take 3 capsules of BioResponseDIM 300 mg each, daily. This is per my naturopathic oncologist. In case anyone is interested in consulting him (he consults with patients from out side the Portland, OR area via phone or skype) here’s the info: Dr David Allderdice, ND, FABNO, Sage Cancer Care at Urban Wellness 503.445.9771, urbanwellnesspdx.com. I was a mess after deciding to not take AIs, worrying about the cancer coming back. After talking with him and discussing my situation, I was completely at ease and feeling very positive about my choice.

          1. Mav – I came to the same conclusion and am also taking the DIM rather than the AI’s. I tried Arimizex. Managed only 3 and 1/2 weeks. Had to quite from horrible side affects. Oncologist is pretty understanding though he now wants me to try Aromasin. That bottle is just sitting there unopened. I don’t want it and am going to go the natural way as well. Thanks for the info! Gaye

      2. I am unable to take Letrozole and my Oncologist wants me to try Tamoxifen .How do you find a Naturopathic Oncologist? Can you but these supplements at a healeh store?

  15. I’ve been on Aromasin since Dec. 1. Saw my oncologist last week and complained about hot flashes and pain in fingers. His two recommendations: Increase vitamin D to 4,000 IU a day (I’ve been getting 2,000 a day in my calcium supplement) and take grape seed extract (he didn’t say how much; I need to check back on that). I was taken aback by the GSE recommendation since he’s not a naturopath and my mindset is strictly allopathic (my dad was an MD). Turns out the GSE shows a lot of promise in real studies, including my doc’s university. Anyway, I’m now really dragging with fatigue. Sure exercise will help, and I need it after being so sedentary through all my treatment, but it’s all I can do to even get off the couch. I was offered a change to Femara after a two-week break to see if symptoms change or go away, but am just not sure what to do. Actually I’m wondering now that if one can take a two-week break between drugs, couldn’t one just take an occasional two-week “vacation” from the current AI? None of my side effects are totally debilitating, but sitting on the couch for 5 years doesn’t seem like a great idea.
    BTW, I will try the Claritin for the finger pain. I’d forgotten how well it worked with my Neulasta shots. Never had a hint of bone pain.

    1. blockquote cite=”” None of my side effects are totally debilitating, but sitting on the couch for 5 years doesn’t seem like a great idea.

      I’ve been sitting on the couch for 4 years, 5 months and 3 days. If you find that pill or oil that gets you up and moving, let me know!

  16. Just had my checkups with MO and BS this past week (I’d had lumpectomy last July and radiation in October). MO had wanted me to start AIs (anastrazole) last fall after the radiation but I declined — he said okay (as the IDC was small, low-grade, caught early) and if I changed my mind could start taking it this spring. Well I hadn’t changed my mind (anything but!), and I was really afraid the MO would drop me as a patient (I like him; very easy to talk to) but he surprised me — he didn’t. Instead, he told me he would recommend that I start taking Vitamin D (1000 mg/daily), grape seed extract (I don’t believe he said how much to take) and also a baby aspirin 3x a week. Also said he has another patient who has declined the AIs and that she is taking the grape seed extract (he didn’t know that worked outside the test tube but that it might help). I was pretty shocked to hear him say that as I don’t think those 3 items are exactly “standard of care” oncologically speaking.

    And here is a link to an article I found interesting — which I’d tried to post previously but which didn’t work for whatever reason: http://www.naturalmedicinejournal.com/journal/2014-03/aromatase-inhibitors-may-prevent-cancer

  17. I am exactly in the place you described. For the last year I have taken 4 different AIs. On Aromasin, I had the longest run- several months of barely tolerable pain, but better than the other 3. Then 3 months ago, it turned against me with a vengence. Twenty four/ seven excruciating bone pain, fatigue, depression, 15 lb. weight gain- my life was so miserable. My oncologist was on a 6 month maternity leave (I went to my breast surgeon for my 3 month appt.), so I made an executive decision last week and stopped taking the drug. I feel much better already. And that’s the problem- my oncotype dx score was high, my tumor was grade 3 and very aggressive. My recurrence risk is high. Do I want quantity or quality of life? I see my oncologist in 3 weeks and we’ll reach a decision. Maybe I’ll take planned breaks from taking the drug to help me handle it for the next 9 years. Yes, I am supposed to take it 10 years or more (!) , not 5. Thanks for letting me clarify and express my thoughts.

    1. Hi Rae Ann,
      What did you decide and did you try a brand name AI instead of a generic?
      I am in the same place, IDC, double mastectomy and intermediate cancer risk by Oncotype and high risk with mamma print. Need to decide on AIs.

  18. I had a biopsy for a recurrence in the same breast as the first 3 years ago. I opted for lumpectomy and chemo then. Im told this time around that mastectomy is recommended, then chemo, radiation and AIS. The end result of this is that I will be left an asexual being. No breast from surgery, no sexuality from the AIS. How does this help us? Because to me this is no better than a death sentence. If the end I am less than I ever was then what’s the point. Im alive but not living.

  19. I had a lumpectomy and radiation therapy 2 years ago and then took letrozole. The side effects built up over time until last month I finally told my oncologist that I’d had enough. So I’ve been off of it for 4 weeks now and feel so much better. The muscle and joint pain is pretty much gone. Still have some bone pain but not as bad. Have lost 5 pounds and my hair has stopped falling out! Now he’s prescribed Aromasin. My pharmacist called me and told me what my co-pay was going to be on it, way more than I could afford. So now I’m considering, rather than asking to try something more affordable, just not taking anything. There are some homeopathic herbs that can help do the same thing. The more I read about all of this the more confused I get. Just can’t decide which way is best for me. But I have to say I like not have all the side effects! I know women who have gone both ways and don’t see that in their cases it made much difference long range. I’m 67 so realistically if I loose the weight I gained in the last 2 years and my bones don’t deteriorate anymore I would enjoy the next 10 years a whole lot more than putting up with the side effects in the hope that the cancer might not come back. There’s just always going to be that worry that maybe I should take the pills. Thank you for this forum!

  20. I’ve been on Arimidex for 4 years and for the first year had terrible symptoms. My oncologist agreed to put me on Cymbalta which greatly reduced joint pain. (Could barely get out of my car or step up onto the sidewalk.). I was also suffering with severe depression. It took us about a year before we got dosage right but I went from 8 or 9 on pain scale to a 4 on most days. By the way, I had double mastectomy on a Wednesday and went into my office the following Monday, so I’m not a light weight — it really was bad and the Cymbalta really helped. Don’t give up on the AI without trying it.

  21. Thank you to Nancy for having this place to speak freely…I am happy (and not so happy) to see all of the other women out there that have dealt with or are dealing with BC. Happy in the sense of I am not alone in my mind battle with this continuing plan to “lower the risk” of future re-occurrences….so here we go. Quick back story I am 44 diagnosed at 41 (December 2012) with very early stage BC stage 1 – 7 mm DCIS hormone + with a side of HER-2 (BRCA negative) – no family history. Did all the recommended — lumpectomy, chemo, rads then tamoxifen. After a few months on tamoxifen ended up with a fully hysterectomy in December of 2013. Started my AI (Letrozole) in 2014 never wanted to read the side effects, had hip pain and thought it was from my jogging and exercising. Figured, it was me…ignored it. Ended up finding a local acupuncturist and hip pain and hot flashes got better over time. 2 years in suddenly started gaining weight, swelling and pretty bad elbow pain in both elbows, couldn’t feel my arm in the morning and very arthritic… oh and a side of high cholesterol (which I have had for years and now am reading might not be a horrible thing) — watched the Truth About Cancer and this inspired me to read the side effects. So I quit my AI a little over a month ago starting to feel better but not 100%. Doc called me yesterday and talked me into a different AI, it’s at the pharmacy and I am angry, scared and afraid to start yet ANOTHER drug for another 3 years. Once I quit the last one I felt so empowered and free – I am all about living healthy with exercise, lots of veg and fruits (minimal meats) non toxic almost everything and organic, blah blah…it’s like I am still stuck in this world of BC and trying so hard to just be free. Do I try this other one and continue to live in the world of “do what the doctor orders” or tell big pharma to shove it – will we know for sure if the risk outweighs the benefits. Oh and forgot – no libido in years and it’s taking a toll on my marriage…even tried the Mona Lisa Touch procedure and still am feeling so stuck…the final word from my doctor is you are young and it’s my job to make sure you have many years to go and this doesn’t occur again. There are no guarantees Good Doc so not sure me feeling the way I do is how I want to spend my days….feeling lost, yet again and it’s annoying. Thanks for listening.

    1. Oh, Erica – you put into words what so many of us are going thru. Thank you for sharing. You are definitely not alone in the way you are thinking and in your struggles to know what is best for you. I have written here on this website about my dx and my decision to stop Arimidex, and to not start Tamoxifen, and about the supplements recommended by integrative medicine physician, so I won’t repeat all that. But, I will add that I did ask my oncologist exactly what MY long term recurrence risk was. She said my 10 year risk with no meds is about 14 percent, and that the med would reduce the 14 percent by 40 percent. So….the med would lower my risk by about 5%. Exercise and diet have been shown to reduce risk by that much, so I am choosing exercise, diet and supplements to reduce my risk. If they could tell me my risk would be 0 with the med., even 1%, maybe I’d think differently. I think you are doing the right thing to do your research, ask questions and more questions, and then decide what is right for you in your unique situation. I don’t believe there is one sure thing perfect answer that fits everyone, so we have to help decide what is best for us, what we can and can’t handle, and then try not to second guess every decision. Hard to do! I am sorry your are going thru this. Courage. Beth

      1. Thanks Beth for your kind words and response. I feel like most of the time I can just be numb to the fact that I “had” cancer and really was positive during treatments which helped a lot. Even with all the complications and just need to be free of it all. I am very interested in taking a holistic approach vs. more medications. Already take multiple supplements including Vitamin D, Zinc, Calcium, Magnesium and Quercetin + C. Flax and tumeric – and exercise almost daily – walking and yoga. Part of me just wants to go that route and just live and not have to worry about my doctor’s advice. I have felt like I follow the rules and need to just go my own way. I am doing more research and found some awesome info on this blog – thrilled to find it. Please feel free to share your secrets with me (I know you said you didn’t want to repeat it, however I am all ears well or eyes on this page) Thanks so much 🙂

        1. Erica – I am more than happy to share anything that I’ve learned and what works for me. I was very early stage 1, grade 1 er/pr+, her- and had bilat mastectomies with reconstruction. Did not need chemo based on the Oncotype 2 test (chemo would have made no difference in 10 yr recurrence). Tried arimidex for 5 months, started having bad side effects (wt gain, depression, could hardly stand sometimes, etc.) Took about 5 months to get back to ‘normal’ again. I walk 6-7 days/wk, sometimes twice a day, for an hour. I eat all the cruciferous veggies, avoid soy, etc., (I am vegetarian), and try to avoid sugar- most of the time. 🙂 I read a book called “Anti Cancer” by a physician/scientist who went thru brain cancer twice, and found alot of good information in it. One thing that stood out to me was that in one study, the difference in women who had “survived their metastatic cancer for more than ten years at a time when available treatments had little effectiveness,” was “they had very specific ideas about what they would or wouldn’t do to help themselves. They accepted certain treatments and refused others.” He talks about the feeling of “helplessness” as being the one emotion that seems to make the most negative difference. So, I think the fact that we are all questioning what is best for us individually, and are actively participating in making the decisions about our treatments, is a really good thing! I went to see an integrative physician who works with ca patients, and she looked at my supplements, and made a couple adjustments to have me get “neutraceutical” grade of a couple of them. I take Vit D3 (enough to keep my levels 70-90, which is high but recommended by my ortho surgeon), K2 100 mcg (to help with vit D absorption), Calcium, a high quality probiotic, Turmeric, and a product called “breast secure” which has I3C and DIM. I also take Melatonin – recommended by the integrative doctor, and also because I read a study by the NIH, regarding how it helps with both mechanisms that can lead to breast CA. You could google it and read it. I know exactly what you mean about just wanting to be ‘done’ with all this. I am 15 months from dx, and I actually go hours now without thinking about it. Most of the time I am great, but there are times it will hit me like a tidal wave again. I’ve gone thru all the stages of grief, more than once. I had to let myself go thru the grief – even though it scared me. Was afraid it would swallow me. I try to see every day as a ‘bonus.’ I am a nurse, and totally believe in medicine and surgery and treatments – but also believe that there is a lot of ‘natural’ things that can be effective. The hard part is knowing how to integrate both, and that’s where I think a specialist in that area helps in decision making. I hope this helps you some, and pray that you will know what is best for you, and find peace in your decisions, and be able to find pockets of joy and laughter each day that help you feel like ‘you.’ You are so much more than your dx.

          1. Thanks again Beth! I will check into the things you mentioned and the doc Elizabeth mentioned as well. I just need to find some time for me to think this over and decide – feel like I am letting my doctor and my family down but I know it’s my body and thus far have done it all and really don’t want to feel crappy in the process. We can only be our own best advocates and have faith that we know what is best for us. XO!

    2. Erica,
      You might want to consult with a naturopathic oncologist. I did as he was recommended by I believe Mav on this blog. He consults with patients from outside the Portland, OR area via phone or skype. Here’s the info: Dr David Allderdice, ND, FABNO, Sage Cancer Care at Urban Wellness 503.445.9771, urbanwellnesspdx.com. He takes each case individually and considers per cent risk of return with or without the AI and what you are comfortable with. I had lots of symptoms with the AI but especially sleep and emotional problems and digestive symptoms. The supplements he recommended are really helping. I can’t say enough on how valuable the consult was for me. My heart goes out to you with getting BC so young. I was 70 now 71. It sounds like you are cancer free right now. I pray for you to find peace of mind with your decision. Elizabeth

      1. Thanks so much Elizabeth! Yes am cancer free right now and plan to stay that way…just need to make this next decision and step and be ok with it. Thanks for the recommendation – I have a picture of the info for the Doc you recommend and will be looking him up…glad you are now doing well with your supplements also that is great news 🙂

      2. Hi Elizabeth, I have been on Arimidex for 9 months and am struggling nearly every day with a sore throat which I think is due to reflux. I also suffer from sadness and no hope syndrome, my name for it. I was ER+ PR+ with a 6mm stage 1A tumour in one breast and stage 0 in the other. I had a bi lateral mastectomy then 4 weeks later a full hysterectomy. I feel I should stay on the Arimidex but want quality of life, I am 57. Thank you for sharing your story it has made me face the idea that I want to stop taking the drug!

  22. Ok…need to see if any of you guys have taken Exemestane and if you have had all the horrible side effects? We are limited on my weapons (I’m stage 4 and have been taking a trial chemo called Iibrance and it’s not working. I have 8 new spots in my bones and breast). Dr said he doesn’t want to give me the big dog chemo again until it goes into my organs. So, he is wanting to give me Everolimus and Exemestane. I have tried tamoxifen, Aromasin and another AI and the side effects were worse than the chemo I took side effects. I am not sure I want to even try it but my dr and my husband want me to just “try it and see”. I am really leaning on the no way side. To me now…quality of life is more important than quantity. Have any of you taken either of these meds?

    1. Wow Katie – I don’t know what to say. I tried Arimidex and Femara and couldn’t handle them. Then my doc wanted me to try Aromasin and I said no more. But I was stage one and felt I could just go a natural route. If I had been a two or higher, I would probably have kept trying. Maybe just give it a chance for a bit to see how it affects you and if it shows results? It is always worth a try because if it’s awful, you can quit. Hugs to you!!

    2. Diagnosed in 2008 with Invasive lobular cancer. Bilat mast., chemo, rads, tamoxifen for 5 years. 2014 was diagnosed with Stage 4 MBC to liver and bones. I took Ibrance for 15 months. Femara for 10 months, now am on exemestane. Just finished 26 radiations for t10 on spine. NOW, i have necrosis of jaw (caused by Zometa) and my liver tumor has increased in size. I have only had hot flashes with exemestane. They now want to try taxol chemo on my liver. Thinking of going the cannabis way. Couldn’t hurt at this point!

  23. Very happy to find this site! I have tried all 3 AI and have found no difference in the side effects (I can’t take tamoxifen due to other reasons). I actually retired so I could deal with the side effects of these drugs. I don’t feel the medical community appreciates the effects these drugs have on people’s quality of life. I keep getting the same suggestions: exercise, NSAIDs, accupuncture etc. I have joined the Livestrong program at the YMCA and my pain is actually worse, and my insurance does not cover accupuncture (which is also a big concern and needs to be addressed because everybody should have the same opportunities for some relief). There really needs to be more studies and data to help us deal with the life altering effects of these drugs. I have been on them for 2 years and have taken 1 drug “holiday” with great relief of symptoms. But again the guilt involved in stopping them (my chance of reoccurrence is 17%) and the guilt involved in the audacity I have to complain when others have passed from this dreaded disease is overwhelming. So I struggle daily as you all do with insomnia, extreme fatigue, leg pain that wakes me up when I do get to sleep, trigger finger, severe joint pain and difficulty ambulating, and I struggle daily with the question how long can I go on like this. Thank you all for your great advice and I wish you all very best.

  24. I am currently in the black hole of not knowing what to do with my treatment right now. I was 40 when I was diagnosed with locally advanced stage 3 breast cancer. I’ve had a mastectomy, chemo, radiation and took Tamoxifen for nearly 6 months, and suddenly had a bunch of uterine changes that resulted in a radical hysterectomy a couple of weeks ago.

    I have known for a while that a lot of drugs don’t work well or at all on me, and after FINALLY sitting down and researching, I discover this while world of Pharmcogenetics. Turns out, the fact that opiates don’t work properly on me probably mean that tamoxifen never would either. I may have had uterine changes for nothing, and STILL died from breast cancer later. This bothers me a lot. Now I find myself questioning the approach of doing therapies because they worked for others. Why can’t we even assess if they are working for US? I’ve decided enough is enough. I want to find a Dr. who will help me find out whether these AI drugs would even work on me before I start subjecting myself to side effects without even any benefit. Heck, as some of you had said here, Tamoxifen made me feel 80. I mean, my side effects weren’t the end of the world, but what is the point of prolonging my life if I’m not even really able to enjoy it and LIVE? I have a young daughter and yes I would like to see her grow up, but I need to find a treatment I can actually believe in and THEN decide whether or not it is worth the pain.

    I don’t suppose anyone else has had this experience?

  25. I am currently in the black hole of not knowing what to do with my treatment right now. I was 40 when I was diagnosed with locally advanced stage 3 breast cancer. I’ve had a mastectomy, chemo, radiation and took Tamoxifen for nearly 6 months, and suddenly had a bunch of uterine changes that resulted in a radical hysterectomy a couple of weeks ago.

    I have known for a while that a lot of drugs don’t work well or at all on me, and after FINALLY sitting down and researching, I discover this while world of Pharmcogenetics. Turns out, the fact that opiates don’t work properly on me probably mean that tamoxifen never would either. I may have had uterine changes for nothing, and STILL died from breast cancer later. This bothers me a lot. Now I find myself questioning the approach of doing therapies because they worked for others. Why can’t we even assess if they are working for US? I’ve decided enough is enough. I want to find a Dr. who will help me find out whether these AI drugs would even work on me before I start subjecting myself to side effects without even any benefit. Heck, as some of you had said here, Tamoxifen made me feel 80. I mean, my side effects weren’t the end of the world, but what is the point of prolonging my life if I’m not even really able to enjoy it and LIVE? I have a young daughter and yes I would like to see her grow up, but I need to find a treatment I can actually believe in and THEN decide whether or not it is worth the pain.

    I don’t suppose anyone else has had this experience? If so, what did you do?

  26. Hi Heather [who posted 6/17],

    I have not had the experience you describe so can’t offer much help that way, but did want to encourage you to keep seeking to find a treatment that, as you say, you “can actually believe in” and that will help you. Someone (Mav) posted back in April about some info that might be useful: “I take 3 capsules of BioResponseDIM 300 mg each, daily. This is per my naturopathic oncologist. In case anyone is interested in consulting him (he consults with patients from out side the Portland, OR area via phone or skype) here’s the info: Dr David Allderdice, ND, FABNO, Sage Cancer Care at Urban Wellness 503.445.9771, urbanwellnesspdx.com. ”

    Please don’t give up looking. There could well be a combination (or several combinations) of allopathic and naturopathic treatments that will help in your particular case. I hope so, and am wishing you success in finding both a treatment and doctor you are comfortable with for relief and a return to better health.

    P.S. You might also find the video series “Quest for the Cure” and/or “The Truth About Cancer” of interest as to possible avenues to explore: https://www.youtube.com/watch?v=Rc1rtIxvkao and https://www.youtube.com/watch?v=KqJAzQe7_0g

    1. Hey Weezer, I would be very careful of buying into all the information supplied through “The Truth About Cancer” conglomerate. A lot of the “cures” they talk about are anecdotal, like the “Budwig Diet” of eating mostly cottage cheese and flax oil. If cottage cheese and flax oil could be proven in a clinical setting with rigorous peer review to cure cancer, damn, we’d all be buying it in bulk at Costco. Plenty of the info they provide is cherry-picked. For example, they state that a “certain study” shows only a few percent of oncologists would agree to be treated with chemo if they had cancer, when in reality it’s from an old study discussing the efficacy of chemo in a rare and late stage cancer. The founder, Ty Bollinger, is an evangelical Christian who believes that not having faith in God is partly why you probably got cancer in the first place. Their purposely calling the protocol of surgery, chemo and radiation “slash/poison/burn” is in the same vein as vegans calling meat “corpses”. Good to get a visceral reaction, you know. Some of their so-called “experts” are HIV/AIDS and holocaust denialists. Many of the people that say they were cured generally have had some sort of prior traditional medical intervention, say surgery, but will not credit that; they will credit the bee pollen they took, or coffee enemas, or whatever. And if you make a comment about being cancer free after going through the standard protocol, you’ll be called a big pharma shill.

      I believe good nutrition is very important in fighting cancer, and if having faith in whatever god you wish helps you through things, that’s fine with me. And if by some miracle those coffee enemas on their own cured your cancer, wonderful! There’s also a big streak of conspiracy theorists among their legions and also plenty of commenters who have never had cancer but feel it’s imperative to put their two cents in about whatever topic is being discussed. Just my two cents.

      1. Thank you so much for posting that Christine. You verbalized something that’s been bothering me about some of the “out there” cures, and I hope others will read what you said and take it in the vein it was intended. I sometimes get discouraged reading here….and I’ll leave it at that. I was very lucky in my reaction to AI’s and acknowledge that not everyone is, but there are plenty of us…few hear about us because we’ve done well–no need to write. I found this website looking up something I thought might be related to them after successfully completing my 5 years (it was not related). My biggest discouragement comes reading of those who won’t try them for fear of side effects they might develop. I had a small early stage 1, diagnosed in my 60’s, but darned, I was going to do everything in my power to wipe it out…and 5 years of AIs was one of them. I know I was fortunate in my easy time. I also have an oncologist who was sympathetic to worries about them, urging me to start slowly if I wanted. Her attitude most likely played a role in my success. I knew I could back out, so taking them at least wasn’t a battle of wills. I am truly sorry for those who have had debilitating side effects, and only write this because I want those who haven’t yet tried them to at least go into it with an open mind. You might be surprised at your success and you are giving yourself the best chance the medical world knows of at this moment to get rid of the beast for good. I probably should have quit after my “leave it at that”. Sorry…I really really feel strongly about this!

        1. I’m one of those you’re discouraged with. I absolutely refuse to even try the AIs. Yes I am afraid of some of the side effects that “might” occur. There are some you just can’t come back from. So waiting to see if you do experience side effects could actually cause irreparable damage to nerves and especially the heart. With a family history of heart disease I was not going to take the risk of a side effect affecting the heart then I’d be on heart medication the rest of my life. My oncologist was okay with me not taking the AI since I’m doing so many things naturally and seeing a naturopathic oncologist. But for all of you trying to decide what to do please do your research and base your decision on that not just on what the traditional medical plan calls for. One important thing to consider that as a MD in the US your doctor that works within the traditional medicine side of things can not give you advise on non-traditional therapies if it’s not mainstream; even if there’s been research showing it to be beneficial; they could lose their license for malpractice. Also big pharma needs as many people as possible to take the new AIs so they can determine 5-10 years down the road if they are truly safe and effective and benefit outweighs risks. Our medical institution doesn’t tell you that there’s a blood test that can determine if you have cancer cells in your blood stream way before a tumor is present but insurance doesn’t cover the test so it’s not done. I paid to have the test done and I will repeat it every year for my early detection. There are so many cancers that don’t have a punch you in the face sign/symptom until it’s too late. The biggest issue is the inactive ingredients in the medication; that’s where most people get the side effects. So that is something to talk to your pharmacist about if you do take them. Even on AIs there are several women in my cancer support group that have still had cancer return once, twice, even three times. So taking meds doesn’t guarantee it’ll never return. Another thing to take into consideration is that everyone has a different genomic makeup so something that works for one person may not work for another even though they had the exact same diagnosis. We are all so different you have to find what will work for you and what risks you’re willing to take. The thing that bothers me the most is the number of women that don’t do research and do whatever their doctor tells them to do. As a side note some of the non-traditional therapies my naturopath has me doing my oncologist thinks is a good idea but he can’t come right out and say “this is what you should do” if you don’t want to take the AI. So to sum up get more than one opinion and be sure to consult with an integrative oncologist at a minimum.

          1. Hi Laurie, I would be interested in learning the name of this blood test you mentioned? I have had the CEAS and the CA 15-3 Antigen (both covered by my insurance) and am curious what else is out there that I’ve not heard about. Like you I am an avid reader but as you say we are all different and come to our decisions from different places. I am lucky my oncologist works in tandem with an integrative health doc and has no problem giving an opinion on alternatives.

            I also just learned something of interest about Luminol testing. I did not have an oncotype (not sure why it was a small tumor and could be there wasn’t sufficient tissue?) but due to side effects of the AIs my doc just ordered a luminol test. Again, not sure why this wasn’t done at the onset but it came back as Type A which is the lesser aggressive cancer and based on that the doc was fine with me stopping all AIs. Hurray! I feel a bit of peace of mind from having run the gammut of explanations, tests, reports and reading to come to this conclusion, however without the Luminol test I’m not sure I would be quitting quite so soon. So for anyone out there that doesn’t have an oncotype ask about Luminol testing.

            I’m interested to learn more about this blood test you mention if you feel inclined to share. Thanks!

          2. Hi Beth! The test was part of my treatment plan with my naturopathic oncologist. It is a Circulating Tumor Cells Count (Maintrac). There’s one company in the US that does it but I had mine sent to Germany because they run a more indepth analysis. If you’ve gone the traditional route and had chemo, as I did, then you have to have it done periodically for a trending analysis. With chemo it causes cell fragments to be in the blood so you have to see if your immune system will flush these out or if they continue to remain in the blood. It is not covered by insurance yet. Cost me around $360. I figured it was worth it and I can save that kind of money to have it done annually. I’m getting ready to reply to their response on questions about the exact treatment I received, then they can be more precise in their analysis. When I told my medical oncologist I was having the test done he had no objections or criticisms. He thought it was a good idea. Though once again since it’s not mainstream or current protocol he can’t come right out and recommend it. Hope this helps. I’ll let you know when I get a response once I submit my info. I’m sure it’ll take awhile for the re-analysis.

          3. Laurie, you make some very good points in your post. This is such a personal subject and I have much respect for EVERYONE who keeps the conversation going on this blog.

          4. I totally agree Christine. Everyone needs to let others know how they responded to meds and other treatments. The biggest problem I notice is that a lot of women don’t tell their oncologist what problems they’re having because they don’t want to feel like they’re wining. And as you mentioned a lot of people don’t comment when they’re not having problems. Open dialogue is the best way to get accurate information out there.

          5. Thanks Laurie for that info on the blood test. Definitely going to do some reading about it!

            My 6 month mammo was clear yesterday and I’ve stopped all the drugs. Hoping by Christmas I will have my life back and the aches and pains and neuropathy will be gone! But the fear lingers in the back of the brain so that blood test could potentially give me peace of mind.

        2. I respect anyone’s decision to stop taking the ai’s or not take them at all. It was a difficult decision for me. I think we all wish there were more women who were not having issues taking them. And I wish our oncos could experience some of these side effects first-hand. That would shut some of them up about it being all in our heads.

          I absolutely get it that people who have not had success with the traditional route and are out of options in a late stage situation are desperate to try anything that might help, especially when it involves children and young adults. The reason I am pointing out the Truth About Cancer group in particular, is that it has a following who are generally against ANY kind of conventional treatment. Yes, you must be your own advocate and do your research and push for answers, and ultimately make some very hard and life-changing decisions, but you must also be careful of falling into the rabbit hole of the internet and taking advice from people who have no medical training whatsoever (aka Ty Bollinger). You know, you can juice and do yoga and take turmeric and still get cancer.

          Speaking of pushing for answers, I am dealing with the recent development of “trigger finger” in both hands. I just called my onco and told the nurse who, although she had heard this could be a possible side effect, told me that none of her other patients had ever developed this. Why? Did they just not report it or thought it was linked to something else? I laughed and said “Well congratulate me on being the first one.” I am waiting for a call back to see what my next step is.

          1. Trigger finger isn’t uncommon. I have a friend who is currently experiencing it and she’s getting some relief with acupuncture.

          2. Christine,

            Your points all well taken. The Nutraceutical movement is also a billion dollar industry and many of the “alternative” sites have all kinds of promotional/advertisements including Ty Bollinger. Re your Trigger Finger issue….I had the same thing only 5 days after taking Arimidex so I stopped taking it….My DO who is into integrative and functional med says I don’t need the AI as my estrogen is already very low and my testosterone high….The Medical Oncologist says that the standard tests for estrogen do not go low enough to detect the levels needed to supress cancer. So she wants me to try a different AI. I will start very slowly and see if I can manage without side effects. To combat the trigger finger I had after Arimidex, I took 1500 mg of Tumeric Extract twice per day which helped A LOT….as well as added melatonin 20 mg at bedtime per the Naturopathic Oncologist and an Osteoprime Forte supplement two caps twice per day. So it’s all good.
            Someday, once I retire from being a Medical Officer for the Foreign Service, I am going write a book called “DCIS an owners manual” that gives women a road map to the various modalities both alternative and allopathic to dealing with this mess….It is all over the place and my heart goes out to those of us who get this “breast cancer” news which turns their lives over on a dime…and then we have to do all the research ourselves.

            Peace,

            Mari

          3. Laurie…thanks for the tip about acupuncture. I tried that for my neuropathy, which did not help. In fact, at times it was really painful when the needles went in and the practitioner had to immediately take them out. So I’m a bit hesitant to go back on that route. Or maybe I should try another acupuncturist.

            Mari, I was taking turmeric but ran out awhile ago…I wonder if that was keeping my trigger finger at bay. I’d better high-tail it back to the Better Health store. Will also get back on the melatonin and check out the osteoprime formula. Thanks for the info!

          4. Hi Christine,

            There is a high correlation between diabetes and trigger finger but it wouldn’t surprise me if the AI’s cause it as well. Good Luck. Christie

      2. Yes, certainly not everything touted by “The Truth About Cancer” should be taken without question; there is plenty of food there for thought, however, and some of those alternatives seem to hold promise. A number of them are of the “can’t hurt; might help” variety, but I would consider them in conjunction with allopathic medicine, not (necessarily) instead of. I myself went with lumpectomy and radiation last year but drew the line at AIs (and I can’t take tamoxifen, although I may have declined that too). The fact that I got cancer at 65 instead of, say, 35 certainly influenced my decision. I’m still being “followed” — in terms of being seen twice a year — by my MO and BS but I’m now also seeing a naturopathic/integrative doc (or is that integrative naturopath … ). I’m mainly taking supplements at this point but other treatments (e.g., high dosage vitamin C infusions) are available. I don’t necessarily go 100% with everything the naturopath says, either (either I’m a born skeptic or stubborn). For one thing, he says aspirin’s a no-no yet my MO is having me take baby aspirin 3x a week — I’m still taking the aspirin. I agree with you on the nutrition; that is a BIGGIE! The more organic the better. Also more exercise; another thing that my MO, my naturopath, and myself from my own research are all in agreement on. In many ways it’s caveat emptor! 😐

  27. Wanted to check back in from my earlier post this month (June 4th) on quitting my Letrozole. I felt free finally from the binds to the little pill that “keeps the c away” or was it – does it? At any rate, I was a few weeks out and thought yay no more drug that is aging me faster and keeping the estrogen out of my bod….will be 45 in May and during my bc treatments has the works done and thought how could there be any estrogen left!

    At any rate, the side effects got me to the point of no return (joint pain super annoying)…well my oncologist had the battle of wills with me (I am stubborn esp. after doing what I was told for many years (started when I was 41)….and encouraged me to try the Exemestane (sp?) and that battle went on in my head for days….do I want to “try” something else that we think works or just roll the dice…my poor husband was ready to straight jacket me. It’s easy for someone to say you should just do what the doctor says when I watch a lot of documentaries and read a lot of books on this stuff.

    Well, I finally quit the mental fight (wasn’t doing me any good) and have been on this other AI for a few weeks now. So far so good, I try not to think about it – more as another little pill in my large stash of vitamins. My hope is that after a few more like 2.5 years I can be done with it all (uh yeah annual mammogram – UGH!)….and not have well how about another 5 years of taking it….hopefully no.

    You are all my heroes, it’s a struggle to stop the mind chatter and just LIVE…but each day I am learning to live in the moment it’s all there is. I am blessed with so much, having healthcare, having doctors, homeopathic treatments to help, nutritionist, being able to exercise, etc….plus a family that supports my decisions which ever way I go. Thanks again for everyone’s comments and help before…it truly did help me. Much love to all!

  28. I have just replied to a message from Phuli Cohan regarding Cannabidiol (see further back here), and I wonder if anyone has tried Cannabidiol yet, or heard back from Phuli? I would be interested in knowing more. Having suffered with insomnia and anxiety with Anastrozole, I have had a 4 week ‘drug holiday’ that indicates my symptoms were drug induced (both symptoms stopped immediately!), and I started on Exemetane (Aromasin) yesterday to see if these side effects are reduced. I had a lumpectomy in March 2015 for a grade 3 tumour (they also removed 2 malignant intra-mammory nodes). I had TAC chemo and radio, and was on Anastrozole for 8 months. I feel very humbled by the openness of everyone who has contributed to this site, and so grateful for the wonderful words of wisdom. There is not much I feel I can offer in return, except to say that gently increasing the amount of exercise I take, (when I had severe joint pain on starting Anastrozole), has meant that I am now almost totally free of joint pain. I have also lost 2 stone in weight through healthy eating which has helped my joints I think. Also I believe that weight loss was for me crucial as I was oestrogen +ve. I live in UK, and wonder if I will be able to access some of the wonderful supplements that so many of you are recommending. So if anyone has any tips for finding the best ‘neutraceutical grade’ supplements in UK I would be really grateful (it’s a bit of a minefield!). I agree with many of you who comment that oncologists don’t seem to grasp the significance of our daily quality of life, and risk reduction at any cost……….however at the moment I feel bound to continue with AIs.

    Nancy, how are you doing on Exemestane?

    Warm wishes to all you lovely people!

    1. Hi Sarah! Not sure if you’ve gotten other replies. Cannabidiol (CBD) does not have the same effects as its THC counterpart. CBD does not give you the “stoned” feeling and from what I’ve read and heard it is not effective for insomnia like THC containing compounds. CBD is being studied for it’s anti-cancer properties. It will probably be recommended in the future for cancer prevention. I have severe insomnia since chemo treatment. If I don’t take anything then I don’t fall asleep. I take Xymogen’s Relax Max that my naturopath recommended. It helps me get drowsy and I will sleep 4-5 hours but to get a good night’s sleep I use THC infused edibles that I get at a medical marijuana pharmacy. Hopefully as I continue the relax max I’ll be able to get away from the THC; though it’s not harmful. I do edibles cause it’s much easier to control how much THC you get. I have some CBD but that was prescribed for nausea and it’s also supposed to help improve alertness and make you not feel as tired. I was ER+ PR+ HER2- . Had double mastectomy, reconstruction, and TC chemo. I have declined the AIs and am working with a naturopath specializing in oncology for supplements and lifestyle changes to prevent recurrence. I am confident in my decision and am so glad to be starting to feel normal again. I’m just glad that California has legal medical marijuana dispensaries for additional options if needed. I recommend doing a search for “naturopathic oncology UK” and find someone in your area to make recommendations for you. Good luck.

      1. Hi Laurie,

        Thanks for your ideas and for sharing your experiences regarding insomnia. I have now started on exemestane, and so far so good I am sleeping better – but it is early days, and so I will look into some of the ideas that you have kindly offered. All the best with working with your naturopath, and thanks again.

      2. SLEEP! Dear Laurie,

        I can tell you some things that really REALLY help with sleep that I have gleaned over the years of being a Family Nurse Practitioner and learned from my Naturopathic Oncologist: Grounding really helps: This means walking barefoot in the grass for 30 minutes a day. You don’t have to walk…just connect with the earth. Can be in the sand, on a beach, on the lawn, golf course, whatever. MELATONIN. If you have breast cancer, like I do, you need to take 20 mg of high grade melatonin like that from “Pure Encapsulations” per night. L-Theanine 350 mg is an amino acid the reduces anxiety. You can take this three times per day though I only take it at night because it makes me sleepy. And Taurine 500 mg which also helps as an anti-inflammatory. Of all of these, the grounding and the melatonin are most important. I am SURE this will help…
        Good luck and good health!
        Mari

        1. Thanks Mari for the suggestions. I currently take the same melatonin but hadn’t heard of using L-Theanine or Taurine. I’ve been doing better at night the past several days by following the carb intake protocol from the Adrenal Reset Diet. One carb serving at breakfast, two at lunch, and three at dinner. Previously my diet had them in reverse order and once I changed it made a huge difference in sleep and getting rid of restless legs at night. If I don’t get the 3 carbs in at dinner time then I sleep poorly and my legs bother me that night keeping me awake for 2-3 hours.

        2. I am having allot of trouble with the side effects from Arimidex. I just started taking it in May 2016. I feel like a 90 year old woman. Its very hard for me to stand up because my knees hurt so bad, depressed, no sex drive ,DIZZY, brain fog, trigger finger, voice went away…on and on. The cancer is gone and I am struggling more and more. This blog/support is so wonderful, I thought I was just being negative, not trying hard enough, etc. This is valid. Thank you all. I have been trying a few things to get me through it. I do intermittently take a CBD tincture/spray made by Care by design – it helps me sleep and keeps the pain at bay. I have just started taking Gaba with Taurine and L-theanine, it seems to help a little, it does keep me calm and I sleep better and I wake up refreshed and a bit more clear headed. My doctor friend gave me some Melantonin to take but it leaves me groggy in the morning. I am considering stopping this medicine and finding a Naturopath oncologist. I have never done very well with pharmaceuticals and I am just not myself… I don’t know if its worth it to keep taking it. my oncologist said that if I take it I have a 17% chance of re-occurance and if I don’t – a 50% chance… I feel so bad that is almost worth taking a chance…

    2. Sarah, I am doing better on Exemestane. I continue to experience some side effects that I hate. I plan to have a bone density test later this year and then re-evaluate. Thanks for asking.

      1. Really glad to hear you are doing better on exemestane Nancy, and I wish you all the best re bone scan. Thanks for the feedback, and I am hopeful that I will also do better on this AI!

    3. Hi Sarah! I have an update to my previous response. I just listened to a webinar on CBD and it was very enlightening. CBD from organic hemp is highly recommended for insomnia, pain, anxiety and to improve nutrient absorption. The speaker was Dr. Philip Blair. His website is ProHealthAdvisor.com. He’ll actually do on-line consults. He highly recommended Elixinol CBD as the best available. No prescription needed. Available everywhere. Not illegal. Recommends starting with 15mg twice a day and increasing from there as needed. He referenced Elixinol.com which has educational info on site; ProjectCBD.org; and Realm of Caring. I’m going to order some and try it out. Hemp CBD, not CBD from marijuana which you need a medical marijuana card for. If interested in listening to the webinar it’s part of a one week series on detox called The Detox Project that’s running through next Monday. If you sign up it’s available til tomorrow morning then again for encore listening on Monday the 3rd. Hope you read this in time.

  29. Hi Ladies. I’ve been following your stories while still struggling with my own. I am now on exemestane (1st femara, then tamoxifen) and since it’s only a month I don’t expect to see the ugly side effects for 4 months as that’s how it was with the 1st 2 drugs. In talking to my oncologist he suggested getting pathology to do a mammapath test on my tissue to find out if it is Lumina A or B. If A then he would be “okay” with me stopping the drugs if I can’t find one without side effects, but if type B then it would indicate a more aggressive cancer with a 30% recurrence. I’m blown away that I didn’t know anything about this test and have to wonder why it wasn’t done at the time of surgery (Oncotype was inconclusive)? Seems to me they should do everything to sort out what level of aggression the cancer has if they have the capacity to know. Anyone else had a mammapath and found it helped in decision making?

    For a bit of humor (I live in FL where medicinal cannabis is not available) so my daughter suggested I smoke some pot to see if it helps the pain. 3 hits of a joint and I can testify with absolute certainty that this is not the pot we smoked in the 70’s! OMG didn’t really like it at 17 years old, definitely don’t like it now, though it was a good source of entertainment for my daughter — Never again!!

  30. I stopped taking anastrozole after 9 years in June. Finally could not stand the creeping narapathy and joint pain and declining bones. Yea they all feel better. Anybody else do this? I do think the hormones are back because the hair on my arms and legs is growing faster and courser like before the teatment. Onocologist does not get it. Either stay on the drug or take your chances. Whatever…
    So anyone else out there taking their chances after being on an AI after many years?

  31. In short, I went through all 3 of the AI drugs initially. My worst side effect was carpal tunnel syndrome. I truly went from a non-existent disorder to extreme carpal tunnel in about 6 months. I had surgery on both hands to correct it and decided at that point to stop the A.I.s. Well, after about 6 months I was feeling fabulous physically but it weighed on my mind that I wasn’t taking an A.I. So I started back on exemestane, which seemed to have the least # of side effects for me. I have managed to make it work, at least for 2 months or so now, but I deal with neuropathy daily now. It started immediately after taking it so I know that is the cause. I take gabapentin to offset the neuropathy. I did see a Physical therapist who deals with cancer patients and have started a workout routine that actually seems to be helping. That, along with the gabapentin, make the neuropathy manageable. My oncologist continues to state that neuropathy is not a side effect (although it clearly is from the research I’ve done) and tells me ‘You are just taking your own journey…’. Well, whatever. If this mixture of medication and exercise continue to keep the pain at bay for the most part, then I’ll keep it up. I worry that the neuropathy won’t improve when I quit taking the medication one day, and that I’ll be dealing with it the rest of my life. I asked my oncologist about that and again, she stated she didn’t know because neuropathy is not a side effect – Good grief! It is frustrating and I wish she would lend a little more credibility to what I say but I guess what I have found, more than anything, is that I am responsible – I have to do my own research and I have to make my own decisions because it is my body and no one knows how I feel but me. I support your going off them, don’t blame you a bit. I wish you all the best in your medication trials (both on and off) and hope that in the end, however long you are on them, that they are absolutely effective and you have no cancer in your future!

    1. Tracy – I’m curious about your neuropathy symptoms. I didn’t have chemo, but I’ve taken exemestane for 1 1/2 years. Probably only a year of it has been effective, since my ovaries suddenly started working 6 months into the drug, even though my doctor assured me I was in menopause, based on bloodwork (I ended up having an oophorectomy, since my onc was reluctant to do tamoxifen because I had a DVT during treatment). At this point, my foot pain is horrible, and it’s like walking on glass in the mornings. The hip pain wakes me up multiple times a night. My arms and hands are starting to tingle a bit. Not to mention the anxiety and anger issues.
      I have a call in to my oncologist to discuss taking a break and then possibly going on another AI. I just can’t keep this up.

  32. Had 3 month follow-up with Integrative Oncologist last Thursday. Labs looked good. We reviewed what I’m doing in place of taking an AI. He’s on board and very supportive. He suggested I add Host Defense’s “Stamets 7” to my supplement routine. This formula is an organic mushroom compound that combines the 7 top mushrooms for immune support. Paul Stamet’s research has shown that the mushroom combination can increase natural killer cells up to 300% along with other health promoting factors. If you want more info the website is HostDefense.com. I bought mine through amazon for the best price.

    I have also just ordered CBD capsules (Elixinol.com); CBD has been shown to decrease pain and anxiety, increase nutrient absorption, improve sleep, and control cortisol. CBD is not psychotropic because it doesn’t contain any THC so you can get it legally without a prescription. It is produced organically in Colorado. The doctor recommends 15mg twice a day and increasing from there as needed. I think I’m going to start at once a day and watch for better sleep. ProjectCBD.org

  33. I started Anastrozole 4 yrs ago this November. I was diagnosed with stage II triple negative IDC/DCIS…negative in lymph nodes…& BRCA2+. Opted for the double mastectomy w/ free-TRAM reconstruction, & had the ovaries removed. After surgery, doses of “Red devil” followed by taxol. The taxol ended early due to neuropathy in my feet. Then came the Anastrozole. I faired pretty well and dealt with the joint pain, but for the last 4 months, Achilles tendonitis has set in and now my knee are being affected. After reading this blog, I’m making the call tomorrow to my oncologist. I saw him in August and he was the one to say the med was causing the tendonitis. He was going to re-evaluate me post dexa scan due soon, & stated that may be all… Dr Fox (at hospital of the university of pa) already told me he does not believe in the 10yr regimen as the side affects are too great. I truly admire and trust this doctor as he clearly weighs the balance of benefit v. detriment. My stubborn warrior mode has me pushing to keep this up but I’m tired of the pain and walking like a 90yr women with severe arthritis. If I push myself one day, I can’t move for days. It is time to listen to my body and break from the Anastrozole. With the BRCA2, the cancer willl likely reappear it’s ugly head, but I have lots of hope with the immunotherapy they are doing and eating clean with being active! March on warriors!!

  34. I have been on Femara since July. At first, I thought I’d be one of the lucky ones with no side effects. Nope. Within a month, I started getting leg cramps. Then pain in my back, then knees, then ankles. When I get up from a seated position, I feel like an old woman. Steps are worse as I am now am having to hold on to both sides of the railing to keep the weight off of my ankles. I am working, but so tired some days it’s hard to put one foot in front of the other. I am taking Claritin, Vitamin D, a hair, skin, and nails vitamin (since my hair has started coming out and my nails will no longer grow) and a baby aspirin every day. After just a few months, I am ready to quit. Five years of this will kill me!

    1. Beverly – I only made it 5 months on Arimidex, due to multiple side effects that became intolerable. Here is the link to a risk tool that someone else previously posted on this site. It is put out by the Cambridge University. Link: http://www.predict.nhs.uk/ It may help you in your decision as to whether or not the benefits of meds. outweigh the side effects for your specific dx. The other supplement that was recommended to me (by integrative medicine physician) is Melatonin. I have read research by the National Institute of Health (NIH) where Melatonin interferes with both of the 2 pathways that can lead to breast ca. I hope you will find this helpful and encouraging. Tough decisions we have to make. Courage. Beth

  35. I was diagnosed with grade 2 breast cancer in December last year. Had mastectomy, six months chemo and three weeks radio. I just went with the chemo but questioned the radio then went with it. Then came the hormone inhibitor part of the treatment. I didn’t like the sound of it and researched it and was horrified by the possible side effects. I went into it a bit deeper and decided I wanted quality of life rather than quantity. I told my oncologist this week that I wasn’t going to go on hormone therapy. I expected a battle but he either didn’t care or he knew where I was coming from as I didn’t get a hard time. He probably didn’t care that much but that aside I have decided that there is no way I’m going through all the possible side effects. And there will be side effects whatever. I feel free now having made that decision. And happening upon this site has made me more determined. Thank you all so much for sharing your experiences. I might not live a long time but it will be quality time free of horrendous drug side effects. But then again I might be ok. I’m happy to take the risk. I’m 56 and was very fit and have become fit again after all my treatment. No way will I compromise that with hormone therapy. Love to you all. Julie

  36. Hello,

    I’m British and live in the UK. I was diagnosed 12 June 2015 with a stage 1 borderline stage 2 Oestrogen and Progesterone + Breast cancer. I had 6 cycles of chemo to shrink the lump, then I had a lumpectomy. Lab results confirmed no cancer in lymph nodes. Then I had a month of daily radiotherapy. Active treatment finished 1 April 2016. Afterwards I went on Tamoxifen – I tolerated it well, except I broke out in rashes over most of my body. Then I went on letrozole (Femera®). I had stiff, aching and painful joints and muscles. Thigh muscles have still not recovered (they were also affected by chemo) The worst side effect is that I had severe depression. I began to seriously contemplate suicide and I was getting intrusive thoughts in which I saw myself hanging from a rope by my neck. I came off these and began to feel well again. Then I was given exemestane (Aromasin®). Physical side effects for me are far less than on letrozole, but my depression is severe again. Cant sleep, when I do I wake up regularly. Irritable, no patience, came very close to suicide again. I have suffered from depression since I was a teenager (I’m 50 years old) and I was advised by my GP (years before cancer diagnosis) that I probably have genetically low serotonin levels and should stay on antidepressants for rest of my life. I was doing fine before I took letrozole and exemestane. I took antidepressant citalopram 20 mg. But the AI drugs had the effect of turning off my antidepressants. My Dr has started me on another antidepressant (Mirtazapine) and I’m waiting to see if these will work for me. Meanwhile after suffering excruciating rib pain, I was given a bone scan to check my breat cancer hadn’t spread to my bones. Luckily it hasn’t but the scan confirmed I have broken 2 ribs on the side I had radiotherapy. My breast surgeon advised me I havent had enough radiotherapy to have weakened my ribs and asked if I’d had a fall or any kind of trauma to break 2 ribs. Now I’ve read just this blog and some replies and discovered that AI drugs can cause bone fractures. Without AI drugs (which research now recommends we take for 10 years in UK) I have 89% of my cancer not returning. The AI drugs give me another 5%. I’m seriously considering stopping the AI drugs and taking my chances. I’m scared. But depression isnt just low mood – it comes with other gifts e.g. fatigue, sleep problems, low libido, aching muscles, lack of concentration etc – which is what the AI drugs are doing to me too! Plus they appear to be weakening my bones and I’ve only been on them since June this year. My bone scan before I took them showed I had good bone health for my age. I was also fit for my age before cancer treatment. Now I feel like an old lady who is mentally unable to function in her job or the world generally. I’d welcome any comments to my post – especially from women who had similar experience with the drugs turning off their antidepressants an what if any brand of antidepressant worked with the AI drugs?? Many thanks if you’ve read this far.

    1. I’ve spent time reading all the other posts – used the NHS predict tool. Link: http://www.predict.nhs.uk/
      I’ve decided to take some of the following supplements: –
      melatonin, reseveratrol, and indole 3 Carbinol, Omega 3 fish oil or Krill oil, DIM DIINDOLYLMETHANE and 75-80mg of aspirin a day. I’ve been off Exemestane for 3 days now and already feeling better in terms of cognitive function. My experience after Letrozole and what I read on USA patient chat sites, is that the physical effects could take months even a few years to fully recover from. Thanks to everyone who shared info and their story. Its helped me make a decision.

  37. Hello Everyone,

    I am post lumpectomy/radiation two years…….Stage 1 (Her-), 2mm and other tumor that was 4mm. I tried all the aromatase inhibitors…..couldn’t tolerate the side effects so I went to an ND, Judi Fulup at Northwestern Hospital in Chicago and she has me on Cucurmin, grape seed extract and vitamin D. Curcurmin is derived from Tumeric; in order for it to work it must be coupled with Bioperine which is derived from black pepper. Tumeric alone is not effective. I hope this info helps.

  38. So, I had a breast cancer recurrence after 13 years. First time was est +1mm stage 1 with radiation only. In January of last year I was diagnosed again and had a single mastectomy,
    Est + 1mm again stage one. However, my onc score was 24 and my oncologist suggested that
    I take anastrozole, which would bring my score down to 12, and have Chemo, which would bring my score down to six. I refused the chemo as I didn’t think it was worth the 6% for what it would do to my body. I started taking the anastrozole and can only say that I felt like I had the flu 24/7. I found a study that was done by a breast surgeon in Ohio that was using testosterone/anastrozole pellet therapy which looked quite interesting. It seems that the testosterone offsets the side effects of the anastrozole and the testosterone also protects against breast cancer. The Anastrozole keeps the testosterone from aromatizing into estrogen. Dr. Glaser has published her results and now one of the major medical centers is doing a trial of this combo. I went to Dayton Ohio where Dr. Glaser has a practice and had the pellets inserted into my hip (very tiny and pretty much painless). I did not have any side effects from this and in fact have been surprised by how much more energy and
    libido I have. Since Dayton is seven hours from my home, my family doc is now inserting the pellets for me under Dr. Glaser’s guidance. My Oncologist is okay with this, although she would prefer that I take the anastrozole by mouth with the testosterone pellets. I am trying this, but am back to the same flu like, laying around all day routine. I will shortly be going back to anastrozole pellets. This is working for me and I am hoping that others may see this as a compromise between doing nothing and allowing these terrible medications from taking over our lives. You can see Dr. Glaser’s work here and get more information http://hormonebalance.org/

    1. Hi Nancy, and every single one of you who have posted on this blog.

      Thank you, thank you, thank you for all the insights, experiences and specific suggestions that you have all included here. They are a huge support and help.

      I just finished my 2nd round with this beast, and am struggling in exactly the same way as so many of you – I have a prescription for Arimidex sitting in my cupboard, and I just cannot make myself start taking it.

      I have submitted to all of the mainstream therapies – 10 years ago had a lumpectomy, single mastectomy & chemo, reconstruction and Tamoxifen for 5 years. I declined the recommendation for Arimidex last time after finishing the Tamoxifen.

      6 months ago, it was back, & I’ve just finished a double mastectomy (had to “re-do the 1st one, omg), radiation, and now have been stalling and agonizing over how to deal with this new MO – who is not as open to integrative/alternative options as my 1st MO, bless him (retired now).

      I don’t need more conflict over simple information gathering and decision making. (His attitude: “This is my recommendation. Just try it, if it doesn’t work, we’ll stop it”. My whole being is screaming, I don’t even want to try it! And not because I’m not strong or brave) I’m aggravated that, after everything I’ve gone through, he just expects me to do what I’m told, no matter my gut instincts.

      So . . . while I cannot add new info to all the great info above, I DO definitely want to say
      THANK YOU ALL for a place where info and support for all options is freely available 🙂

      I’ve now got a long list of the many other options I have for pro-actively tackling this phase of the challenge.
      Nice going, Nancy, for providing this venue!

      Best wishes, strength and courage to us all for 2017!
      Linda B.

      1. Linda, Gosh, you have been through a lot. Sorry to hear “it” came back. Ugh. I understand your resistance to taking Arimidex. I didn’t do well on it at all, but have done “better” on Aromasin. It’s an individual choice, so do what feels best for you. Thank you for your kind words and for chiming in on this topic. My best to you.

  39. I was diagnosed with Stage II B breast cancer in July, 2014, and I had a lumpectomy and radiation. I had one sentinal node involvement. Before i go on, I need to say that I have suffered with diabetes for over 20 years and I had viral cardiomyopathy (heart virus caused by swine flu) in August, 2012. I have a cardiac pacemaker/defibrillator implanted in my chest. I am on two insulins and Metformin for the diabetes. I am on many other drugs for the heart virus. I was put on Arimidex (no chemotherapy at all, just 35 radiation treatments), and the side effects I had were mainly joint and bone pain and terible RIB cramps. It was excruciating. I told my oncologist about it and she changed me to Aromasin. Well, since my heart is weak due to the heart virus, I have had cardiac arrythmias and I looked up the side effects of Aromasin and found out that cardiac arrythmias are one of the side effects of this drug, as well as high sugar. I’m on a 2 week vacation from it. I will probably never go back on it since my sugars are sky high and I am not about to have Aromasin cause me to die from a life-threatening arrythmia. The only other drug left is Femara which I am hesitant to use due to the same side effects. My oncologist blows me off like some of you other ladies when I bitch about the side effects of these terrible drugs. I don’t know what to do. I have a low chance of recurrence (9%) and I had clear margins. One of the sentinel nodes was positive (the second one, not the first, and not the third). No other nodes were involved. Can anyone tell me anything about alternative medicine or if it’s safe to stop these terrible AIs? I have to weigh the misery I am feeling now every day of my life versus a possible recurrence which my oncologist said “you will be fine.” I don’t trust that. I had an ONCO test of my tumor and it showed a very little chance of recurrence. Why do I need to be on these drugs that are making my life intolerable? I feel like an old woman. I’m 62. The worst is the joint pains in my knuckles, toes, elbow, hips, and the hot flashes and the fatigue, plus the problem with the heart arrythmias. I had one a couple of weeks ago that the cardiologist told me was life-threatening. My heart is monitored by a machine I keep in my house that is hooked up to my land line and the doctor receives a report every day about how my heart is functioning. I went from 10-15% ejection fraction (heart muscle pumping) to 40-45%. Normal they told me is 50-55%. I don’t want to undo the good my cardiologist has done for me, yet I don’t want to die of diabetes or a recurrence of breast cancer. Any educated advice would be greatly appreciated. Thank you.

  40. Hi All! I can’t tell you what a good resource this is for me to come back to (I posted last year when I quit taking the Letrozole) After taking about a month “holiday” from the med, my oncologist talked me into Exemestane and have been on it coming up a year this summer. It’s been really easy to just pretend nothing ever is going wrong and ignore the side effects. Until you actually read them…and then debate if this is truly the right thing to do.
    I have managed to hurt my back by doing too much and can’t come to terms with the fact that 1) I am not super woman even though I believe I can do it all 2) probably shouldn’t carry a lot of heavy boxes up and down a flight of stairs (helped my daughter move out on her own), exercise more than I am used to, to numb the pain of my daughter moving on, help my husband move a huge double bowl sink, deep scrub a bathtub and then try to do plank challenges at night before bed. Totally my fault and didn’t think to consider that not only did I go through a lot of treatments chemo, radiation, lumpectomy, hysterectomy, + meds. My body is not what is once was and for some reason can’t make myself believe I actually hurt my back. Although, clearly it’s not uncommon. I did reach out to my oncologist and he doesn’t “think” my AI is related, however said I can take about a month off to see if it helps me to improve. Even though he end game is to put me back on….ARG! Oh and a side effect is back pain? WHAT? Lovely…he said he hasn’t had any other patients have this complaint but I seem to get to be the young persistent one that has issues pop up that he “hasn’t seen” Yay me!
    Anyone have any back pain issues they can share some tips with a girl? I am doing PT twice a week now and exercises as prescribed. Muscle relaxers as needed at night and working on really thinking about how I sit all day at my desk.
    Also, wanted to share this if anyone is having vaginal dryness issues – my general doctor has had me try a DHEA suppository that I get from a compound pharmacy to “prime the pump” or so she called it. It did seem to work but sounds like you have to use it or lose it while priming that pump 😉 She did check in with my oncologist before I tried it (few months back) and since it does not go into the blood steam he was totally fine with it, here is a link:
    http://www.clevelandclinicwellness.com/Features/Pages/DHEA-Suppository.aspx
    Much Love to all!

  41. I’ve just come back to this site after posting in November last year. I still have no regrets about not taking the hormone inhibitor. Every day without it is a quality day. I’m 57 and want quality of life now. I’ve had mammogram and CT scans recently and all ok. It might change but I’ll have no regrets. Chemo was bad enough and I’ve recovered from that and feel great now. I know I wouldn’t if I were to take the prescribed hormone inhibitor.

    Love to you all
    Julie

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