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The Dark Side of Aromatase Inhibitors, Part 2

The Dark Side of Aromatase Inhibitors – Part 2

I have so much to say in this post I don’t even know where to start. I guess you could say this one is a bit of a rant. I’m a firm believer that a good rant now and then is good for you, even a healthy thing, so that’s one reason I’m sharing about my experience with the dark side of aromatase inhibitors.

You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.

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 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 have been 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…

Do you want to read more articles like this one? Click Here.

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 patient adherence 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 adherence. 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?

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

You’re turn!

Update:  I am still taking my prescribed AI, and I now have a different oncologist. I feel it’s important to state both of these things. For many reasons, I couldn’t tolerate Arimidex, and switching to Aromasin made a difference for me. I still hate it, but I’m doing better. Also, just a reminder that this blog is never intended to be a substitute for sound medical advice. It is a place to vent, share, support, learn and advocate. Because no one should suffer in silence. No one.

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?

You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.

 

The Dark Side of Aromatase Inhibitors

714 thoughts to “The Dark Side of Aromatase Inhibitors – Part 2”

  1. Thank you so much for this blog and for all of you who have posted. I get so much more info here than from my “team.” I was diagnosed with breast cancer in May of this year. Only need radiation after my lumpectomy. I am now on anastrozole. After reading all of your posts I understand now why my legs hurt so terribly in the mornings. As I was taking low dosage HRT meds for hot flashes/night sweats (age 60 post menopausal) I am back to suffering from them. Doc has given me Venlafaxine to help, but so far it hasn’t helped. We have increased it three times. She has Sid if this doesn’t work we will have to try something else. I am awake every hour at night and don’t sleep well. Anyone found something that helps the hot flashes? It’s embarrassing when my glasses steam up at work.

    1. Jody, the venlafaxine only worked for me for about 4-6 weeks. I was not going to increase dosage, nor keep taking other meds to counteract the side effects of medication. I stopped taking all of it. Still feeling the joint pain and stiffness – trying to work around that. I’m gutting out the hot flashes during the night. We have our thermostat kept very cool, and an overhead fan on high every night. I have found that drinking a lot of water helps. Since I have been off the meds the hot flashes kind of increased, but now they are slowly decreasing some in intensity. I’d rather put up with that than the other stuff. I am trying different supplements to see what works. Turmeric, may be taking the edge off of them. I do know that black cohosh didn’t help before, but I may try it again. Good luck

      1. Update: I stopped the AI as my “team” suggested to see how severe the hot flashes were. However, coming off of venlafaxine has been HORRIBLE. Thought I had the flu. Doc said it was withdrawal symptoms. Did I mention it was HORRIBLE? Now I have to go back on it to come off slowly. Before all the meds I felt pretty good. I will be talking to oncologist about coming off everything and finding something that works for hot flashes. Thanks for saying the hot flashes diminished some. There is hope.

        1. Venlafaxine is an evil drug. I had a similar issue w withdrawal, and came off very, very slowly. It didn’y Do much for the hot flashes anyway, but gave me insomnia and restless legs!
          Evil drug.

    2. I started anastrazole in September 2018. After 15-20 major hot flashes a day, and little sleep, I was changed to examstane. Hot flashes cut in half and are milder, but, I have crushing fatigue, joint pain and muscle aches, and anxiety!
      I am at a total loss as to what to do next. I also have epigastric pain, which is very unusual for me….
      Not sure this is an upgrade…

  2. It was horrible for me.. started out with hot flashes, really bad ones! Then anxiety and mood swings.. would cry for no reason…called Dr. and he changed it to another one, It was no better…ended up depressed so had to go get something for that and anxiety..I decided that is no way to live so I got off of them 2 weeks ago…not sure what I am going to do…

  3. Hello! Thank you for this post. I may have missed it, but has anyone had the mental fog that I have experienced on Aromasin. Until I looked up depression, I thought that was what I was experiencing, I didn’t know that Aromasin affects the brain. May even cause early Alzheimer’s. I found this info on the American Cancer Society page in an article written by a neuroscientist. His wife refused to take it.

    1. Alice: While the joint and muscle pain was horrible, I think the brain fog and forgetfulness of taking the anastrozole was the WORST part of it. I commented on my own below. I finally had a meltdown at the end of October and stopped taking all meds I was on. Still experiencing the body aches and brain fog, and I was only on the medication for 5 months….I don’t know how anyone has taken it for 5 years! Letting my body try to detox and heal through the end of the year. I’ll regroup after that and figure out some other alternatives. My quality of life suffered horribly from this stuff; and I’m afraid it might end up being permanent.

      1. Alice, Annette, I suffer from brain fog, but I always ascribe it to my menopause, not the anastrozole! Regardless, my acupuncturist has a treatment point on the crown of my head that cuts through that fog! She’ll treat me for that about once every 3 months for a few subsequent sessions, then I’m good. You may have the same results!

        Love to you all!

      2. I have the brain fog and forgetfullness only after 3 months on the drug. I had heard about “chemo brain” and that is fog and forgetfullness, so I thought it was from that. But now that I read what other women are saying, I truly believe it is the ANASTROZOLE.

  4. Thank you for this blog…I, too, have/had been on an AI; Anastrazole. Prior to all of this breast cancer nonsense I was still teaching group fitness classes 3 time per week and also working out in between along with working my full time job. I have been a group fitness instructor for nearly 35 years. Had my surgery (lumpectomy) in February of 2018, radiation for 6 weeks and then started the AI in late June of 2018. The bone, joint, muscle pain became intolerable. I also started getting numerous calf cramps in the middle of the night; not to mention being up every hour with hot flashes. I honestly think the last good nights sleep I had was the day AFTER my surgery! I think even worse has been the brain fog and forgetfulness that has plagued me since being on that medication. I was put on generic Effexor for the hot flashes; it worked for about 4-6 weeks. By the end of October I stopped taking ALL meds…I am fed up. I don’t know how you made it for 2 years, I barely made it 5 months. As of this writing I am still experiencing some joint pain and body stiffness, but I am also barely working out anymore due to my job(s) and also the fact that I am still so fatigued from lack of sleep its all I can do to get up in the morning, work 8-14 hours some days, then get home. I have put on some weight, not enough to be significant to most anyone but me, however, it is still unacceptable. I had to switch to a new oncologist due to a change in jobs/healthcare systems. She wanted me to start taking Letrozole; I filled the RX, however I am still not taking it and I told her that this past Friday. I am going to give my body a chance to “regroup” through the end of the year at which point I am supposed to be seeing a “holistic” MD who is part of my healthcare system. I am also going to continue my own research into supplements, diet changes, and other things that I can do to naturally help my body heal. I am 58 years old and this has been THE only medical issue and surgery I have had in my life. (even my 3 childbirths were easy!). If anyone out there has any research or info that they can share of a holistic nature, please let me know!!!!

    1. I had Diep flap unilateral ,mastectomy April 9 then radiation in June….I started anastrozole sept 1…depressed,hair thinking,anxiety and severe bone pain….I work out 5 days a week,aerobic,power yoga,yoga and strength train. now dr game me resroril yesterday for insomnia so sever,going to bed at 7 M…I don’t think I’ll ,are it longer…Iam 59…I eat plant based diet as well taking supplements. my onco dx score was 9..I hope in June the trial will be used as gold standard which is your recurrence. rTE FOR CANCER WAS SCORE 9…..VERY LOW….if THEY DECIDE A LOW SCORE IM CONJUNCTION WITH ONCO DX TEST USED AS GUIDELINES FOR TREAMENTS…..I MAY STOP DRUG…hope I CAN MAKE IT TO June

      1. Hello Debora, which study are you talking about that it is going to occur in June? Is it something to do with a low onca type DX scorel? Is there an opportunity or a possibility that we may be able to stop taking the AI if we have a low score?

    2. I started seeing a naturopath in January last year to help me detox from my post-lumpectomy radiation treatment. She used all my labs from the numerous tests I’d had in the prior 6 months, we discussed vitamin therapy (high doses of D3 (above the 50th percentile I fell in) and iodine (I take cholella, a seaweed supplement). She uses BIE (BioEnergetic Intolerance Elimination), which is a natural, non-invasive method that helps a person’s body identify stressors that are causing symptoms. It sound hookey, but I trust her and I trust the pseudo science behind the diagnostic tool.

      I also advocate for seeing a massage therapist and an acupuncturist.

      I love you all!

    3. Get the book “Cancer Outside of the Box”, which approaches cancer treatment holistically and has lots of information regarding breast cancer.

    4. Dear Annette,

      I will only say this: beware of holistic anything! A colleague of mine who also had BC decided not to do any medical things, went holistic, tried acupuncture, homeopathy, naturopathy, the lot – and she is pushing up the daisies in her village’s cemetery.

      Knowing this, I take medical expertise very seriously and don’t fall for any esoteric theories. Science is what saves us, or at least prolongs our life. However, I will not lie: Aromasin is making my life very difficult. My hair is falling more and more, I have pain everywhere, especial the legs and feet, and constant anxiety, nervousness and insomnia. But I want to put all the chances on my side and not end up like my colleague, so I am holding on…

    5. Look into the book “the plant paradox” by Dr Gundry. He has videos you can watch too. It is a way of eating that is suppose to be healthier , prevent and cure disease ad well as fight or keep cancer from coming back. I have been treated for stage 1 breast cancer with 4 weeks of radiation, and am on anastrozole for 5 months. Have been having some joint pain after extreme excercising and Charlie horses once and a while at night. Am mostly following the Dr Gundry diet, no sugar and no animal products except wild caught fish , shellfish and grass feed chicken eggs. Cancer thrives on sugar and there is a enzyme in all animal products beef, chicken, pork, cheese , milk that have a enzyme neu5gc . Neu5gc is found in all tumors. So in theory us cancer people shouldn’t really be eating any animal products. I do eat the wild caught fish aND shell fish occasionally. It’s a difficult diet to follow, but he has a lot of scientific research to back up his claims. He is a heart surgeon by trade.

    6. Yes – you can take DIM and work up to the full recommended dosage. (you will detox a bit for a while) DIM occurs naturally in cruciferous vegetables but we cannot eat enough of these vegetables to get the benefit of estrogen control. It works naturally by metabolizing estrogen correctly and even helping you excrete the excess. I am still trying to regain my strength after a month on Tamoxifen and then a month on Anastrazole. AIs harm your heart and while you may no get another cancer, I read that about 20% of women on these drugs have a stroke or heart attack. Huh?! I just don’t want to die period! The heart is effectively damaged. No Thank you! Now I would not encourage anyone to take my advice unless they are already OFF AIs because they can’t take them at all, like me. I have been off a few days and still can’t take a deep breath. My heart rate stays elevated which makes a good run impossible and I miss my runs and work-outs. I miss any energy at all. Check out the Truth About Cancer online for more info on ways to fight back naturally. I have lost all faith in western medicine at this point, although it was all I had available. Yes, lumpectomy was needed and the “safe” radiation knocked me for a loop but I’m Not Doing anymore of theses horrible AIs!!! Is it toxins?, I dunno but it’s not good. Asia incorporates many types of alternative treatments and patients Live, but you have to research. The Truth About Cancer just had a docuseries called Eastern medicine. I learned so much and I hope you do too! Big Hug, Kelly

    7. I had my cancer surgery December 2017, chemo in February and ended radiation July 16th, of 2018.they found 2lymph nodes with cancer.
      They put me on anastrozole. Have been on since June 20th, 2018. In a few days will be 1 year, the pain is so bad in my joints, I thought it was my fibromyalgia.
      So glad I cameon this article. This past week has been my worst, I will be 60 at the end of the year and feel like I am in my 90s. Cramp in my legs and my knees have so much pain and stiffness. Do not sleep nights and very irritable and fly off at the smallest thing.
      I asked my doctor if they changed my meds, if my pain would go away and he said he cannot guarante.
      where is our quality of life!

  5. I started on the devil drug Aremidix in April 2018. My last pill was Mid November. I have COMBED the web for info on how to reverse the horrible side effects but I have come up with nothing. I am 64 and was just fine before this drug. Active in ALL aspects of my life. Now I hurt every where in my body especially feet, legs, hips, chest, shoulders, head, & hands ALL THE WAY TO THE BONE. I have NO sex drive. My skin & hair & nails are fragile and dry. Everything about being a woman has changed. Are there any suggestions for reversing the damage this drug has done? Thank you in advance.

    1. Jaine- I also had terrible side effects – my body hurt everywhere and the pain in my hands kept me awake at night. My doctor and oncologist were ok with my stopping the meds, My cancer was caught early and I choose mastectomy but I could not live as I was living. I was told it would take about 6 months to feel better in my hands and joints. I have followed up with an orthopedic doctor who did some X-rays and gave me a steroid pack to knock back the pain ( which has helped very much) This may be short term but I am grateful to know there is no evidence in my X-rays that the hand pain is permanent. Within a week of quitting the meds ( i tried all of them BTW) I began feeling like myself- mentally! For me – the worst part of this has been the AL’s – so I am working to find the answers to helping my body feel better. ( As much as possible without meds) I believe that Yoga, massage, naps, and working with a body roller, and lots of stretching is my ticket. My doctor also told me that research has shown that exercise would offer me close to as much protection as the meds. So – I’m gonna go with that since I could not live with the meds. I believe the use of my hands and sleep were a top priority for me. Also- the meds made me feel like I was sick everyday – like I had Cancer or the Flu! which worked against my efforts to want to fight, exercise, or try to live my best life. Good Luck to you and God Bless!

      1. Thanks Lisa for sharing. My cancer was so small they couldn’t oncotype it. I had bilateral mastectomy, no node involvement so am really wondering whether I have much risk at all, other than the almost certain debilitating effects of the exemestane I am on. I was doing okay with the tenditinitis in the hands with lots of supplements (evening primrose oil, glucosamine, HA, Algae cal, turmeric, Vitamin D) but now I am having tendinitis symptoms in my hamstring, and I read that some folks have tendon rupture from AI. I’m going to take a vacation from AI which may be permanent. My oncologist is useless. She always seems surprised at side effects! Isn’t it her job to know this stuff? They have such tunnel vision – it may generally keep cancer away (who knows whether you ever would have gotten it?) but it kills you in a different slower but more likely way. It ticks me off that no one seems to care about side effects.

  6. I failed to mention the ANXIETY and MOOD SWINGS and INSOMNIA were intolerable as well. So I have the Nero part of me back since I quit the Aremidix but I still have all the rest. I’ve detoxed, detoxed, detoxed…. oh and no matter what I eat I have constipation and bloating. I cannot believe how this drug wrecked my life!

  7. I have found no articles or comments about taking lesser dosages of AIs. I would think this is an option. Maybe some people are being overdosed. Apparently everyone is prescribed the same AI dosage, whether they are 6′ and 300 pounds or 5’1 and 100. Are body weight and size related to the side effects?
    After trying two AI and feeling miserable, I decided to stop. I was bi, Stage 1 and Stage 0, ER and PR Pos, HR neg, Onc 11. Had radiation. My radiation oncologist didn’t think it was a bad decision, but my medical oncologist felt I should try tamoxifen. Then I read how it effects cognitive function more than AIs, among other things. Being 76, and already having trouble concentrating and forgetting words, I did not want to go that route. Also, with advancing age, there are a lot of other things coming down the pike.
    The wife of a friend of my husband had decided to forgo chemo and AI, and went for some Chinese mushroom soup therapy. Her cancer has spread throughout her body in about 3-4 years. I pointed out that she had stage 3 cancer, but my husband is nervous and wanted me to go back on the pills.
    I had already tried 1/2 every day, with problems. So I have decided to try a half every other day so that I don’t have to spend my life with depression, weakness and insomnia. There is not a lot going on in my life, so I can tolerate down days, as long as they are not my total life. My reasoning is that some reduction in estrogen is better than none. I also try to exercise, eat well, and have more cruciferous veggies and shitake mushrooms. I have lost ten pounds, and hope to lose some more.
    The problem is that we are not relying on an exact science, but statistics. The cancer math tells me that without AI, my chance of dying from cancer is 1 or 2% higher than if I take the pills. (Actual, not relative percentage.) You can take the pills and still die of cancer, albeit a slightly lower chance. They are improving on the ability to assess the aggressiveness of the cancer, but it is still a roll of the dice in the end, sometimes with the odds more in your favor.

  8. I tried the lower dose, but still had side effects. I decided to just forget about the pills for now.
    My radiation oncologist is running a fitness program for cancer patients, which I have joined. So far we have had just two meetings, so nothing much to report about it.

  9. So glad to find this. I, too, was prescribed Arimidex following lumpectomy and radiation tx. Took for approx. 3 months and could not tolerate at all. Could hardly get out of bed. I am a nurse, I work 12 hour shifts and spend most of that on my feet. Had leg pain, back pain, ribs hurt, hot flashes were constant, not really “flash” but continuous…no energy but couldn’t sleep. I stopped taking and felt better after about 3 weeks. It has been a little over 2 months since I stopped taking it. My doctor wants me to start the aromasin and try that but I am afraid…I am 59 but I felt like 100. I am not sure what to do….but I am glad that there are other people who feel the same, and it is not in my head. I feel like my Oncologist is just saying well, this is what you have to take and that’s the end of it.
    Thanks for letting me vent.

    1. Denice, I too am glad to fine this information. I have a lumpectomy on left breast April 2018followed by 20 dosesof radiation. I am a nurse work 12 hour shifts. I am also 59 looking at working 2 1/2 years more. I lived With the 6 months of aches and real pain daily. The breaking point for me was my left thumb swelled up and became unusable. I am right handed but worried it I would start having the same thing happen to that hand. I first thought I slept on my hand. Took me four days of extreme pain and no mobility in my thumb to decide to stop taking the drug. After two weeks my thumb is about 70/ improved. I called my oncolist and asked for RA referral and PT/OT therapy out patient which they did referrals. They told me to take a “medication holiday”. In a month to try another medication.

  10. I’m so glad to find this! I am actually going through fertility treatments and the fertility docs have put me on Letrozole. I already have acid reflux pretty bad and I felt much worse in the few days (5) that I was on this medicine. Also, the overall light headed and groggy feeling and aches and pains made me just want to hibernate! I would like to detox my body from this drug as soon as possible, but not finding a lot of information for this one specifically. Any ideas or suggestions on what would be a good start? Thanks so much in advance!

  11. I have been on hormon blockers for almost one year. I started out with letrozole. I was on it for 7 months and started to itch every night after I took my pill. My doctor switched me to Arimidex. I have on it since December. I have horrible acid reflux which wakes me up.

    1. Though I’m sorry you have had itching, I am relieved to hear your experiences. I too have had horrible itching and breaking out in hives, and my lips swelled up as if I’d been punched in the mouth. I was on Anastrozole for about 4 months when the itching and swelling started; my doctor switched me to tomoxifin about 6 weeks ago, I still have some itching and hives-but it’s better than the Anastrozole. I stopped taking anything for about a week when I had out of town family here for a visit, and I felt like my old self again! I’m sure starting and stopping isn’t a good idea; after all it’s the estrogen that ‘feeds’ the cancer cells and fluxuating levels by not taking the pills can’t possibly be a positive for us. I’m learning to live with it, and ways to make it more manageable by taking Zyrtec and lots of anti-itch creams and lotions. Bottom line… it’s just another reason that this damn cancer is not for the faint hearted!

  12. Thank you all for sharing. It’s so important to have a forum where we can speak openly and honestly and where we are heard. I had a breast cancer recurrence in Jan 2018, 16 years after first experience (chemo/mastectomy, radiation) and on the road with 2 surgeries, 2 different chemos (CMF and taxol) and then 6 weeks of radiation for the recurrence. Thought I had enough side effects from them until I started reading about the AIs. I was not going to take it, but my cancer was so strongly estrogen positive that I knew I had to try to prevent a recurrence if I could. But, I told my oncologist that it was also about my QoL. He had me start taking fish oil, turmeric curcumin, recommended melatonin and I also started myself on Vit B complex. He also had me “ramp up” on letrozole. 1 month at 1x/week, then 1 month at 2x/week, then 1 month at 3x/week (M/W/F). If I could tolerate the 3x/week, I was to go to every day and see how I did. If side effects got worse, he said to drop it back to 3x/week. I am at end of my 3rd month and will be ramping up to every day. So far I am abe to tolerate, except I do get some leg cramps at night, my joints get stiff, and my knees are terrible. Feel like 80 instead of 56. I am very fortunate as I have retired, so mentally, I am ok and not heavily stressed with work. I don’t think I would be able to take doing the work I had to do. I can only do so much at one time. I am “fatigued” from a physical and mental perspective. I have pushed myself and started exercising more – yoga, pilates and walking – and generally feel “ok”. I have put on 20 pounds which shocked me, so now really watching what I take, which has caused me to start eating a lot better and so far I have dropped 5 pounds. I am not sure the vitamins help, but will stay on them and I KNOW the melatonin (3 mg) has helped me with falling asleep. In fact, I probably sleep more than what people think is good – 9 hours a night. I realize that 3 months is still quite early, but I will see where this takes me. My dear hubby is also “watching for signs” and said he would be honest with me if he felt I needed to stop. For what it is worth, there is an article published in 2015 regarding the dose of letrozole. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4740217/ Interesting. Some of you may want to talk to your doctors about dose. Good luck everyone. Prayers for long, happy and healthy lives.

  13. I am coming up on three years post unilateral mastectomy for Stage I, grade 2 invasive ductal carcinoma. Three widely dispersed tumors. Two sentinel nodes were biopsied and were clear. No reconstruction. My oncotype score was “0,” a number my oncologist had never experienced before. At the determined and threatening insistence of my woman oncologist, I tried Tamoxifen for four months, along with Gabapentin to ameliorate the hot flashes. I had had very strong reservations based on my sister’s experience with five years of Tamoxifen and five years of Femara. She would still tell you they ruined her life (19 years out, now). In those four months, I had severe thinning of my vaginal walls, urinary incontinence, vaginal bleeding, thickening of my uterine wall (9 mm), bladder prolapse to the opening of my vagina, rectal prolapse, difficulty retrieving thoughts, words, ideas as if I were aphasiac from a stroke, blurred vision, slowed reaction time while driving a car, severely affected libido, hair loss, heart pounding vasodilation six times per night, and suicidal thoughts about ten times a day. I would not have said I was depressed; I just saw almost everything around me in terms of how successfully it could end my life — tall trees, ropes and bungee cords, highway overpasses, steep slopes by the side of country roads, cold rushing rivers and tides, pawn shops. I had a 3 cm polyp prolapse through my cervix. My oncologist discounted my symptoms as normal side effects, until the prevalent suicidal thoughts. Before that, she said most of the effects (I was 61) were just part of the normal aging process and having given birth. I was 14 years post menopause at the time and had had no symptoms before Tamoxifen. I left the oncologist’s care, asked my surgeon to be my follow up provider, and warned all of my physicians that discounting my very strong feelings about my treatment, my side effects, or my pain were triggers for memories of childhood molestation. I started exercising fiendishly, stopped all meds, and started a new business in retirement. I experience intermittent and unpredictable PTSD during January and February as I approach my annual re-check — inexplicable crying, nightmares, anxious dreams, intrusive thoughts while trying to fall asleep, depression, reluctance to go to bed. So far, the PTSD has cleared with the arrival of concrete news from the annual check and with the arrival of spring temperatures, more sunshine, apple blossoms in the yard, and the promise of another year without thinking directly about it. I guess a trial run of Tamoxifen was useful in proving how damaging it was to my body, and it got my brain’s attention, for sure. Some side effects resolved (vision, hair loss, suicidal thoughts, uterine wall thickening) but some have remained constant — prolapses, vasodilation at night that awakens me four times a night, frequent urination. At this time of year, I find it helpful to share my story and to read others’ stories. I am so grateful to have found this site. Blessings, strength, and endurance to all —

  14. Hello. I started off with Arimidex and then changed to Aromasin. ARIMIDEX Was awful. All the probems that have been previously described and especially the dryness. I am estrogen positive, and second time cancer, so I had my ovaries out as well as, my left breast removed. I was stage 0/1 cancer lumpectomy, and radiation. Same breast stage(1) mastectomy on left breast. No reconstruction. I took Arimidex for two months or so before I changed to Arominson. So far I have been taking this for around 2 years. More severe side effects in the last few months or so. Thinning vaginal walls, as well as, uncomfortable using the bathroom just to urinate. ( lots of times using the drug that turns your urine a reddish color ( similiar to AZO but more powerful). Going to oncologist Friday the 22 of February. Planning on asking her plenty of questions, and what happens if I stop the pill totally. I have joint pain especially in my hands: but tolerable considering the other. Just hoping that there might be a better alternative. Hopefully, I can have some news that can help us all. Thanks for reading. Prayers for us all

  15. I just finished a 3 week break off of Anastrazole … After 5 months on it and thru 6 weeks of radiation the bone pain was severe ..not to mention the hair thinning , dry skin and all the rest of the side effects .. During the 3 weeks off my bone pain is almost gone , I feel like the brain fog is gone ( I did not have chemo ) but now I have to start on Aromasin tomorrow … I picked up the rx today but battling with myself to take it… I’m 67 years old .. I’ve always been very active in the past and enjoyed fun times with my husband , family and grandkids, but these pills greatly affected my quality of life .. I will start these pills tomorrow but I don’t have alot of hope that the side effects will be any easier … Cancer itself is a crappy hand of cards to be dealt to begin with but continuing these for 5-10 years … I don’t know …

    1. So glad to have found this site. Breast cancer twice 2015 and 2016. Chemo and rads first time, Rads second time, after botched invasive diagnostic procedure. Tried ‘em all, Letrozole, Tamoxifen, Aromasin and now, Anastrozole. All intolerable side effects. Came off Anastrozole December last year (my choice) Started taking last week, absolutely rubbish side effects, going to try taking a tablet once every 3 days. Methinks quality of life over quantity! Ps my mum lived for 34 years after her breast cancer WITHOUT ANY medication. Pause for thought?! This is a brilliant forum for expressing feelings and experiences. Big love to all bc survivors

      1. Hey Ladies. This site has been so helpful. I was diagnosed last year at the age of 63, Stage 1 no lymph nodes ER+, PR+ Her2-, 1 cm, and I had a double mastectomy in June. I was surprised my Ocn score was 24, but no chemo per Oncologist BUT of course, an AI (Letrozole). I really resisted and researched, and every Medical opinion was to take it. In the meantime, 2 friends had recurrences after over 10 years, both had similar original diagnoses, and they had NOT taken the AI’s due to side effects. So I caved in and started first of February taking the meds. Using a lot of supplements to help with the joint and muscle pain, exercising, etc. For the first time in my life I am so “blue”. It’s a struggle to want to do anything. I have to really push myself. I just had bloodwork for my thyroid and my cholesterol has really taken a jump (I eat clean and really watch it) plus have gained 15 pounds since my surgery last June. What is so confusing to me is the scoring websites (Predict Breast and http://www.cancermath.net) for recurrence show very little increase in percentage of survival with the meds vs. no meds. So if that is the case, why does every medical person act like hormonal therapy is the main thing that keeps survival down. I am having to weigh the definite side effects against the benefits for sure.

  16. I had a 1cm grade 1 invasive ducal carcinoma in 2003, a lumpectomy , re-excision for clean margins followed by four rounds of A/C chemo and 28 rounds of radiation. I was burnt badly by the radiation. I had jelly bean size blisters on the top of my breast and the skin underneath sloughed off, yellow and oozing! I felt I had breast cancer treatment overload and refused tamoxifen and AI.
    I thought after 15 1/2 years cancer free I was cured but in December I found out I had a 1.3 cm invasive lobular carcinoma, grade 2 in the same breast! I should mention I felt pain deep in my breast for several months and told my gynecologist about it. She ordered a diagnostic mammogram. Nothing showed up on the mammogram so they did an ultrasound and they found an area of suspicion that I was told should be biopsied. The entire time I was sure it was not cancer because I was always told breast cancer doesn’t cause pain! I had a mastectomy with DIEP reconstruction in January. I am almost 9 weeks post surgery and still have three open circular wounds on my breast that are very slow to heal! I am still out on disability. My medical oncologist wants me to start Letrozole at the end of this month but I think I will skip the AI! Quality of life is more important to me than quantity. My oncotypeDX score was 21. I am post menopausal but I can’t afford to retire anytime soon and my job requires me to be on my feet all day. I have joint replacements and I am not willing to suffer for a hypothetical reason. I don’t even know if I will be alive in 5-10 years, but I read that AI’s don’t change survival rate. Ultimately I am the one who must live with the consequences of my decisions.
    Personally I am angry that this is the best the research can do! By the way, my thought is that most side effects are from lack of estrogen, not the AI, which is what the AI is supposed to do. Women deserve effective treatment that doesn’t have such horrific side effects!

  17. I was on anastrozole for about 5 months before I simply could not do it anymore. I then started taking Letrozole and within a week began having suicidal thoughts. I quit taking it over a weekend and when I started it again I had the same result. My oncologist said the risks outweigh the benefits and I can no longer be treated with estrogen therapy. I don’t know what my future is but I prefer to truly live for 2 years than suffer for 5.

    1. Hi Rebecca, I am sorry to hear about your struggles. I had trouble with Anastrozole at first, but my Dr. put me on Effexor XR. I took 37.5 mgs at first and then up to 75mg. The first 48 hours was rough, but I have taken both together for nearly 9 years. I don’t think I could have done the Anastrozole long term without the Effexor.
      It might be worth a discussion with your Dr. BTW, I take mine together in the morning. Note, I do have wild and crazy dreams, but if that is all I have to complain about then I am happy.

  18. Wow! Ladies, I am so happy to have found this site. I am a breast cancer survivor like the rest of you. I was diagnosed at 47yrs old with Invasive Ductal Carcinoma. No lymph nodes. I had a mastectomy and chemotherapy and then put on Anastrazole (Arimidex) I have been taking this med for nearly 9 years. In the beginning I was suffering from depression and mood swings, and many of the side effects mentioned about. My Dr. put me on Effexor XR to counter balance these symtoms. I had to ramp up at one point to 150mg to keep things going well. Over-time I asked to try and scale back onthe Effexor (Venlafaxine) as I was worried about taking a drug this strong for so long. My husband swears he can smell the medications on my skin. I am now taking 75mg per day which seems to be the magic number. When I tried to go to 37.5 I felt very foggy, moody, unhappy, etc. so back up to 75mg. I still have many of the stymptoms you report although have determined I can live with them as they are not severe enough to want to stop the Arimidex. I have considered it my insurance against reoccurrence. My mom and I both had cancer at the same time. Her’s came back after 5 years and she is no longer with us. My biggest saddness about the effects of this drug is my total loss of libido. My hubby and I haven’t been sexually active for several years now because it is painful for me. He is super supportive as we have been married over 30 years and he said he doesn’t want to take any chances of losing me. His own sister passed from breast cancer at 42. I am writing today because after nearly 9 years of taking Anastrazole, I have new symtoms of severe pain in my pelvic area (right side) and my sacrum on the left side. Both are extreme enough that I have had to take Vicodin to get through the day. I had a nuclear bone scan on my hip back in September and an exray of same hip/pelvis last month. Nothing shows a fracture, tear of any sign of cancer. Last week my Dr. suggested that maybe these new severe pains were a latent symptom from taking Anastrozole. She suggested that i stop taking it immediately and wait a week. If no change she will order an MRI, if better then we will assume it was the cause.
    After 4 days, I have to say that the sacrum pain and pelvic pain have subsided substantially. I haven’t taken any pain meds for two days. On the other hand I have been feeling blue and having diarrhea. I have also had a headache, but that my be just a cold. I am still on the Effexor and will try to taper off once we decide about the Arimidex for sure. Thanks for all your comments. It is nice to feel I am not alone with all of this

    1. After 9 days off Arimidex I a am feeling like I am having withdrawal symptoms. Has anyone else experienced withdrawal symptoms when stopping arimidex?

    2. Your husband is right, there is a smell. I couldn’t put my finger on it when I first started to smell it. We changed our washing liquid, creams, everything. I think it was worse in bed, we changed sheet every other dayish, what with hot flushes an sweating. My poor girlfriend would be wringing wet. It’s just not fair what your all going through.

  19. Well by the name you know I’m a man 🙂
    Our storey,
    My girlfriend and I were together for 9 years. When we met I was 53 she was 42. We met on a dating site, and our first date was at the cinema, I saw her from a distance, she was at a cash point carrying a semi see through plastic bag with something square inside covered in foil, I thought wow lucky me my first ever internet date and I’ve got 3 bells and a pressy. I walked over to her, tapped her on the shoulder and said “ hi gorgeous I’m Paul and I’m bricking it haha” anyway we made it into the cinema, sat down were she then presented me with the plastic bag, saying you don’t have to eat it now but feel free to if you want. It was a banana cake and yes it got demolished before the film ended. From that time on we were joined at the hip.
    For 7 years we had the best fun ever, we bought a house in Spain where we escaped the UK winter, we are bikers both types pedal power and petrol power. My daughter had a baby which my girlfriend loved to bits, our lives were perfect until.
    While in Spain at Xmas time 2015 we noticed a small pea sized lump in her right breast. We didn’t panic, as it was so small and quite hard to find without being quite rough trying to find it, our first thoughts were, it was just normal tissue or at worst a cyst.
    In June 2016 we came back to the UK and made a immediate doctors appointment.
    I won’t bother going through the procedures and anguish we went through as you all have been there.
    It turned out to be a 10 mm cancer but thankfully not detected elsewhere.
    Treatment was a lumpectomy, radio and Anastrozole for 5 years. We then put the cancer to bed and focused on the dreaded drug. At the beginning things were fine. For the first year we carried on as normal. We still made love, we both finished if you know what I mean. The dryness wasn’t a problem there’s ways around that. Her hair was falling out a lot, we had wooden floors and her blonde hair showed up everywhere, I just picked it up no probs. I think the hardest thing she found coping with were the constant night time flushes and insomnia. I recon she read a book every other night while I irritantly snored my head off.
    Going into the second year of the demon drug things were taking a nose dive sort of overnight. My lover and best mate ! I became her enemy. I tried, we tried. It destroyed her and us. We’ve parted, I wanted to hold her in my arms through the nightmare. I love her to bits. She won’t speak to me, her narssasit daughter sends me hate mail and says her mother isn’t experiencing any side effects whatsoever! I can’t bare thinking of what she’s going through, plus 3 more f******g years of it.
    There must be another way. Sorry I ranted a bit, it’s not about me I know, but I’m in bits too.

    1. Paul – Has your girlfriend used the predict tool? https://breast.predict.nhs.uk/predict_v1.2.html
      In 2013 I was told I should do 5 years of Ai. I suffered every side effect with the dreaded Anastrozole for 1 year and then even more with Letrozole for the next 2 years but when, in 2016, my oncologist told me that research now said I should stay 10 years on the drugs I wondered if I was actually being used as a guinea-pig for statistical analysis. I did a HUGE amount of reading into the subject, found the Predict Tool, entered my pathology details and discovered that the difference for me between taking the drugs and not taking the drugs would enable me to live until 86 instead of 85. I double checked this with my oncologist and then explained that I would prefer to stop taking the drugs. He said that would be fine and I would still have my annual check for reassurance that I am Ok. Within weeks I felt so much better. You are both having a traumatic time so it will help if you both take some control of the situation – eat a healthy diet, follow an exercise regimen, make quality time together that does not rely on the demands of sex but just enjoying each others company. And definitely do some research into the effects (benefits & otherwise of Ai) Put her pathology provided by the hospital into the Predict tool and make informed decisions about the way forward. All good wishes.

      1. Hi, thanks for replying. I will suggest this to her but won’t hold my breath. She is a teacher and has a inbuilt thing that, what she says to her pupils is gospel. Therefore what the oncologist says to her is gospel too, and they have advised her to do the full 5 years. Personally I don’t think they care about the side effects, they just look upon the drug as a treatment.
        I have 2 close mates, both their wife’s have breast cancer. One was on tamoxifen for 5 years, she endured those 5 years of grief from it. Three months after she stopped taking it she was dead. This drug doesn’t stop it migrating to other organ. I don’t know her full storey and neither does my mate, her husband, as we think she kept lots it to herself.
        My other mate, his wife found a lump Sept, 18. At first they said it was 10mm, I believe from ultra sound. Then on mamo it was revised to 25mm. She had a mastectomy they also found it in lymph. The treatments were for chemotherapy and tamoxifen for 10 years. She declined the chemotherapy and opted for radio. She is 3 months into the tamoxifen, I hope she took the correct choice. She is a paramedic helping people all her life, there’s no rules in this world.
        Getting back to my girlfriend, as you suggested, we were doing all that. No red meat, just fish chicken. She is also coeliac, so we both had not wheat. We ate a variety of veg and loads of fruits. We are also fitness conscious, long walks and cycling. I also took on board that her libido was diminishing to almost nil and never demanded or even tried anything, I can deal with my urges easily! really all I wanted was a cuddle, but that wasn’t really on either. I don’t think she was bothered, plus I seemed to bring on one of her flushes within 10 seconds of cuddling.
        I will send her that link, whether she takes any notice I doubt, especially the one year life expectancy gain.
        Thanks
        Paul

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