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Aromatase Inhibitors, 5 Years, Now What? Part 2

As I mentioned in my previous post, I have passed the five year mark of being on an aromatase inhibitor. So now what? I have decided I am going to stay on Aromasin. I do not know how long I will stay on it, but I am going to hang in there for a while longer. I want to stress that my decision should not necessarily be your decision. Believe me, I get it if you decide something different. I totally understand and respect the decisions others make regarding these meds. Many women (and men) do not stay on for the full five years. Some of us, me included, take breaks. Others skip a pill here and there (Yes, I have done that). Still others, pop that darn little white pill no matter what and do not understand how anyone could consider not doing so. 

We are all different. We all experience different side effects and some don’t experience any at all. In fact, I would love it if you would comment about how well you are tolerating being on an AI or tamoxifen if this is the case for you. Sometimes we don’t share so readily when things are going well. And it’s important to do that too.

So why did I decide to continue?

First of all, I have done everything in my power to keep the cancer beast at bay. Bilateral mastectomy, check. Chemotherapy, check. Ovaries and Fallopian tubes yanked out, check. Uterus – removed for good measure, check (yes, there was no real consensus on the value of doing this part, but…). AIs for five years, check.

And now my oncologist is highly recommending that I stay the course. I trust him. I have to.

In addition, dear hubby has been very clear on what his wishes are. He wants me to stay on, despite the nasty side effects. And yes, he bears the brunt of some of them. I admit it. He does.

And I know the decision is ultimately mine, but then again, is it? (Post for another day).

I’m BRCA+. Do I have a greater chance for recurrence?

Supposedly not, but…

So those are my reasons. Such as they are.

I do not like the side effects of these drugs. At all.

My hair (what’s left of it) is awful. I often feel de-feminized. My joints hurt. I have bone loss. I struggle with fatigue, weight gain and other side effects listed on the handout that comes with these dang drugs. I hate these drugs.

Plus, I don’t like how there is not yet a consensus on what a woman in my position (post-menopausal at diagnosis and completed with the first five years on an AI) should be doing. Data is still being collected.

And yet…

I’m signing on for a bit longer because I hate cancer more than I hate these AIs.

And again, this does not mean I am suggesting my decision should be your decision.

In all honesty, if I were living in a cocoon all by myself, I would likely opt out.

My oncologist (bless his heart) suggested this:  “My advice is to continue, but tackle this in smaller time frames. Forget about staying on another five years. Tell yourself you’ll give it a try for another three months and then revisit.”

I like that advice.

I’m going to take it.

For now, it’s still one day at a time.

It guess it always has been.

Note: In my next post I will share about the relatively new Breast Cancer Index Test which I have been investigating with great interest.

If you’re on an AI or tamoxifen, what do you plan to do after five years?

What side effects are/were you experiencing, if any?

Have you ever skipped your pill(s) on purpose?

 

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34 thoughts on “Aromatase Inhibitors, 5 Years, Now What? Part 2

  1. Sigh. The AI dilemma for us. I love your decision making process, and the wide viewpoint of the whole ordeal.

    I just got my bone density results (pre-AI, my Oncologist felt we should keep track). Now a new issue for me, however. My bone density is above normal for my age – I have always had strong bones, and no joint issues. I love that about my otherwise healthy self before breast cancer! I am the lucky gal who has only had to take ibuprofen up until this (with the exception of Gabapentin and mild pain prescriptions here and there for my restless leg issue and ovarian cysts rupturing the past few years). I really, really do not want to cause harm to my bones! Augh! The Arimidex sits in the pantry, awaiting me to give it a try. Promised doctors, hubby and kids I would, but dang, everything in me does not want to do it. Guess I could just tell them I am, and not – nope, I am terrible at lying – could do what your Onco says and just say to myself I will take them for the next little while and see.

    Fortunately for me, I did not test positive for BRCA, and, had a well formed tumor (Stage 2A). Had half my left breast tissue removed (she’s much perkier than righty, and nipple has some feeling – I got to keep her and feel for my BC gals who lost both of these feeling parts). Had full hysterectomy too – even cervix – so eliminated those major cancer risks. Had radiation (was spared chemo). So why would I hesitate with all the good fortune I was bestowed with in my cancer ordeal? Why would I not want to do everything to ensure it doesn’t come back, with perhaps less fortunate outcome? I feel crazy moments about this – and worse, no one around me understands why it is even an issue. My friends who had to go through so much worse encourage me because I may not he so lucky next time, if there is a next time. My Oncologist says if I don’t take the AIs for 5 years, my risk of tecurrence goes up to about 20%. I asked if removing my breasts would be sufficient rather than years of drugs, but as shared here, it still is a part of the deal. Of course, my BC full mastectomy friends say that would be nuts, but that is the magnitude of my fear of these drugs. it is my body, and I am simply not attracted to causing harm to my other healty body parts – I am not attracted to affecting my quality and enjoent of life…but, then again, don’t I want to ensure I have a life 5, 10, 20 years from now? Ah, the crazy dilemmas of cancer that only those who have it understand. Whew, grateful I have a place to voice all this safely! Thanks, Nancy!

    1. BTW – I did a one month gig with Tamoxifen after radiation, it was awful, and basically set my womb. existing fibroid tumor, tubes, and ovaries into a painful orbit – hence the full hysterectomy. Even hubby instanlty noticed the changes in my demeanor within days of being on that stuff. Anyone who takes it, I give you major courage kudos, I couldn’t hack it.

    2. Pam, It is a dilemma for many of us, that’s for sure. I understand your fears about these drugs, but remember not everyone has the side effects, so giving them a try is worth it IMO. You must do what you and your oncologist feel is right for you. Thank you for sharing so candidly. And good luck with your decision.

    3. I am now in my 6th year from diagnosis. I tried the AIs, two of them but joint pain was too much to bear after 12 months and my bone density was slipping below normal.. So I went to Tamoxifen and apart from hot flushes just about all the time, I am now managing that better too and am doing okay. Doctors suggested after the 5 years that I continue for a further 5 years but I have had some long term effects such as the bone density which is now stable as I take Calcium+vit D every day, have had full hip replacement, snapped both cartiledges in both knees, open heart surgery to replace valve and the list goes on. But the thought of having to go through cancer again and the ramifications and emotions I will put up with as much as I can to avoid this. I have agreed to continue on Tamoxifen and I too have set small goals, “see how we go for 3 months managing the side effects differently” method. This helps a lot as I feel I have choices still.

      1. Cheryl, Sounds like you are doing what feels right for you, and I agree that setting smaller goals time-frame-wise helps. Thank you for sharing.

  2. With 11 months and two surgeries having passed since diagnosis, I have resisted the pressure for AIs/Tomaxifen (opted for no radiation/no chemo). I have taken a naturopathic route for several reasons, and knock on cancer cells, so far so good. However, the oncologists bring it up at every appointment. So my question to those who have opted to engage in one or the other pill therapy, has age, aging, and length of time on a protocol made a difference, better or worse? Though my path is currently different, I wish the best to those on another, and could one day be on a still different one–the future always seems to loom with more decisions.

    1. Maggie, Everyone is different, so I’m sure there some who experience improving, as well as some who experience worsening, symptoms over time. Wishing you the best too. Thank you for sharing.

  3. I am past 10 years on Arimidex. My oncologist & I have decided I should stay on it as long as side effect are tolerable (they are). Latest research reported to me by Dr. does not state an “end date” to the use of aromatase inhibitors – meaning a time when it is no longer effective at preventing cancer recurrence or mets. I am now 11 1/2 years since diagnosis of my stage IIIa, grade 3 triple positive IDC – with cancer in 5 lymph nodes. I had lumpectomy, radiation, ACT chemo, one year of Herceptin, plus the Arimidex. I developed some osteopenia at about the 9.5 year mark on Arimidex, which could also be due to advancing age (68). I am now on Prolia injections twice yearly for that. I have no other side effects from the Arimidex. Side effects from Prolia are mild “achy bones” for a couple of days after injection.

    I try to eat healthily as much as possible, eating mostly organic non-processed foods. I limit alcohol to 1 or 2 glasses of wine per week, and avoid soda altogether. I have lost 30+ pounds over the years since my pre-cancer weight, mainly with carb restriction & exercise .

    I will continue on Arimidex as long as side effects are as mild as they are, and cancer stays away. I am planning on a lot more healthy active years in my life!

  4. Shari, I think I will follow your lead – we are similar. I was diagnosed as 2A, I am HER2+ and e+. I am tolerating Arimidex well after 14 months on it. My joints are a little stiff, but they were stiff before all this started. If I exercise consistently, it is better. My thumb is numb, that seems to be about it. I am grateful, so for as long as I can – I will stay the course. I did have a complete hysterectomy due to what turned out to be a benign tumor (YAY) and I have a touch of osteopenia and for that and being proactive am receiving Zometa every six months. I had TCH plus Perjeta as my chemo/targeted therapy, just FYI. Am 61 now and intend to do my best to be active and engaged.

  5. Good luck, Nancy. This is a hard, brave decision. I could not/would not take AIs because of my mom’s history of severe osteoporosis — it led to her death. I ended up having to stop tamoxifen because I could not function well enough while on it to do my job. I just hope I stay NED. It’s a balancing act for us all.

    1. Kathi, Not sure it’s a brave decision, but it is a hard one. I am sorry about your mom’s experience with osteoporosis. That’s really sad and scary too. Each of us must do what we feel is right for us. I sure as heck hope you stay NED too. And yes, it is a balancing act for sure. Thank you for adding to this discussion.

  6. I was on tamoxifen for 3 years then got metastatic BC of the bones. Stopped tamoxifen and started Lexepro a stronger one then couldn’t tolerate side effects moved to arominsone Disease still very active after 9 months estrogen positive Now I’m getting fasoldex hormone injections monthly Tumors in my neck have shrunk will know true results in 60 days when I get another pet scan. I take presidone 10 days a month to help with joint and Bone pain. I’ll be on this injection until it stops working.

  7. I have about 62 little white pills left until I reach the five-year mark. My onc wants me off to conserve my bones, and doesn’t feel the evidence is compelling regarding extended AI therapy.

    1. Chandra, Some oncologists do feel that way, which is part of the reason all this is frustrating, the lack of consensus. We are all individuals, so of course, decisions we make about these drugs are as well. Thank you for sharing your plans.

  8. I literally could not tale Arimedex. I held on through nonstop 24/7 hot flashes, heart palpitations and blood pressure spikes (that they told me were just a coincidence and claimed were not from the drug), but the joint pain was so excruciating, that was too much. Next was Femara, 2+ years of elevated blood pressure, weight gain, and joint pains that were only bearable with prescription anti-inflammatories. Arosmin was the most tolerable AI. But the one good thing about being on an oral chemo is NO MORE AIs!
    Some of us have more trouble than others with AIs.

    1. Elizabeth, I couldn’t tolerate Armididex either. It got to the point where I could hardly walk and I said I’ve got to try something else. So far, Aromasin is going better, not great, but better. And yes, I guess that is one good thing about oral chemo. Thank you for sharing. Good to hear from you. Hope you’re doing okay.

      1. Nancy, My onc wants to switch me from Arimidex to Aromasin bec of side effects (fatigue, bone and joint issues mainly). I’m afraid to switch as it’s the devil I know versus the one I don’t. Also because it seems Aromasin has irreversible issues. How are you feeling on it? Was it an easy transition? Are you still having joint pain. Thanks in advance.

        1. Linda, I am doing a lot better on Aromasin. Still hate it, still have some issues, but nothing like I had on Arimidex. I understand your hesitancy as I heard the same thing about the irreversible effects. I am concerned about that too. My oncologist didn’t seem to agree with that, so I’m not sure what’s true there. As of now, I am still on it. And for me, the transition was relatively “easy”. Good luck with your decision.

  9. Nancy,

    I just had my 5-year checkup with my oncologist. I’ve been taking generic Femara for 21/2 years (after 2 1/2 years on Tamoxifen). I am working on a blog post about my appointment, as it was eye-eopening. Since you are writing about this very topic, I’ll share some of what I learned here.

    There is a new biomarker test for early-stage breast cancer patients called the Breast Cancer Index (BCI) test. They take a tissue sample of your original tumor to determine if you are likely to benefit from extending anti-estrogen therapy and if you are at high or low risk for recurrence after 5 years. This is different than the Oncotype Dx score, which determines risk of recurrence in the first 5 years post-diagnosis and helps determine if chemo is warranted.)

    Anyway, there are 4 possible results with the Breast Cancer Index test:
    1) High recurrence risk and tumor IS receptive to anti-estrogen therapy
    2) High recurrence risk and tumor is NOT receptive to anti-estrogen therapy
    3) Low recurrence risk and tumor IS receptive to anti-estrogen therapy
    4) Low recurrence risk and tumor is NOT receptive to anti-estrogen therapy

    I had never heard of this test before. But I am having it done. Results should be in in April.
    In the event I come back as #1, I will definitely STAY on Letrozole.
    If #2, I will be worried, but I’ll STOP taking the drug. (If my cells are not receptive, why suffer another 5 years?)
    If #3, that is a gray area. I may decide to stay on the drug b/c my tumor is responsive to it even though I am at a low risk for recurrence
    If #4, I will STOP taking the drug and really feel good!

    I did hear from a friend who took the test in January… her results put her in the high risk group as well as the group whose tumors were receptive to anti-estrogen therapy. So she is staying the course and taking her pills for another 5 years.

    I’m interested to hear if others have taken this test yet or have even heard of it! Thanks for writing about this! I’ve been so behind in my blogging and blog reading!
    xoxo

    1. Renn, My next post is going to be about the Breast Cancer Index Test, so thank you for bringing it up. I will definitely be reading your post on this topic. I have had some issues getting this test… but you can read about that next time. Thank you for sharing and I’ll be very interested in your experience with BCI.

  10. I took Tamoxifen for three years and couldn’t tolerate it any longer. I got my life back, had my ovaries removed and feel great. My doctor is pressuring me to take AI’s now. I don’t want to. I am four years out from Dx, triple positive, stage 1, node negative, had lumpectomy, chemo, rads. I’m 50 and want to enjoy my life and my 14 year old daughter, I’m single for the first time since 1985. I want QUALITY of life, not to turn into a depressed, fatigued, impossible to lose weight, always in pain person. Like when I was on tamoxifen. Not a decision I take lightly, I have another checkup in a few hours and we’ll see what happens…

    1. Lisa, I don’t think any of us take these decisions lightly. All we can do is evaluate all the angles and make decisions that feel right for us. Good luck with yours and thank you for sharing.

  11. Hi Nancy,

    I never heard of the Breast Cancer Index Test; it sounds interesting.

    As I commented in your previous post, I could not tolerate the AIs. I was upset about that. I never deliberately skipped a pill and had every intention of staying the course, but my oncologist made the decision for me to stop. I waited until I was in utter agony to call him. Did I do the right thing by stopping? I don’t know. I would like to think I did the right thing for me, but it’s so darn hard to tell.

    Thanks for writing about this. Your post made me think about writing about my AI experience in a future post.

  12. Nancy, I’ve never skipped a Tamoxifen pill. I’ve been too scared to. I don’t know what I will do after 5 years but it all depends on whether or not I will be building a family. I am having a conversation about that next month with my onco. These are all very hard decisions. I hate that I was dx with cancer at such a young age (not that there is ever a right age for this mess!).

    You have to do what’s best for you as so will I. And I am a big believer of quality of life. I wish you good luck and may you be at peace with all the decisions you make regarding your cancer treatments.

    1. Rebecca, I hate that you were diagnosed at such a young age too. You have big decisions ahead and I wish you all the best as you sort through all that comes into play while making them. Thank you for sharing.

  13. Nancy – this topic really made me do some soul-searching and relive some painful memories of my mom’s breast cancer story in order to answer your questions. Ive been on Arimidex since May 2015. I had so much horrid post-chemo collateral damage that I couldn’t tell what might be Arimidex-caused. The joint pain that so many of us know finally settled down, and has all but disappeared. The hot flashes and all the rest, I can tolerate. For now. I always claimed that I would never continue stopping – why did I undergo slash, poison and burn to turn away extra time with my family? My mom suffered every side effect known – Halsted Radical Mastectomy, cobalt not-so-targeted radiation, chemo without anti nausea meds, and
    the heart and lung damage and fatal osteoporosis that followed. She took this all on, joined countless studies, helped start the first Reach to Recovery program in her community, and she always (outwardly at least) said she would do what it took to beat this disease and so that her daughters wouldn’t have to go through this. It would break her heart to know that I
    have it. I’ve changed my mind – I will try to continue, I will work with my doctors to change meds and do whatever I can to stay on them, but ultimately, I can’t know what the future will bring and I support anyone having to decide to stay or go with Aromatase Inhibitors. Knowledge is power.

    1. Linda, I’m sorry this post caused you to relive some painful memories, but I guess soul-searching is good, right? I’m sorry your mom suffered so much. I certainly relate to that. Mine did as well. Like you, I will try to continue on these drugs too. But of course as you said, none of us knows what the future will bring. I support each person’s personal decision regarding staying on these drugs or not too. It’s all a balancing act. Thank you for sharing.

  14. hi,
    just wondering if anyone has experienced swelling in both legs and feet while on letraxole (in addition to all the other side effects, ugh!)
    tx

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