Choosing between Tamoxifen and AIs -- I'm baffled

Options

I will be starting some kind of estrogen-blocker next month, and I'm meeting with my onco in a few weeks to figure out which one (that whole process has been on hold for weeks while we wait for my oncotype score, which is taking forever, to see if I'm doing chemo). I'm struggling to figure out which one would be best for me. She & I started the conversation at my last visit and even she went back and forth several times before we tabled the discussion until after we figure out if I need chemo. I'm 54 and had a prophylactic oophorectomy (after learning I'm BCRA2+) three years ago. I might have post-menopause already but I was on birth control pills at the time so it was hard to tell. Either way, I'm post-menopausal now, so I can do either tamoxifen or AIs.

The list of side effects for AIs is daunting, especially the joint & muscle pain because I was diagnosed with rheumatoid arthritis 11 years ago; it's completely under control now and I take Enbrel. But the list for Tamoxifen, such as the mood and cognitive effects, is really concerning too. I've heard that AIs are now the "go-to" treatment for post-menopausal women because they are "less toxic" than Tamoxifen. I'm at low risk for blood clots, and I'm getting a bone density test in a few weeks to see if I need to avoid the AIs. Other than the cancer, I'm in good health overall, fairly active (running & yoga), with a busy job that is cognitively demanding requires long hours (I'm a teacher and administrator in higher ed). I'm married so it would be nice I have some semblance of a sex life over the next 5 years. So I feel like I'm picking my poison here...

If any of you been in a similar position, I'd love to know how you decided which medication to start with. Many thanks in advance.

Comments

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2021

    I can't speak for Tamoxifen, but I'm doing an AI (Aromasin), and it caused hot flashes, loss of bone density, and mood swings. The hot flashes have dissipated over time. I'm on Prolia for the loss of bone density (was full-blown osteoporosis, now osteopenia). I'm on Celexa for the mood swings. I've just started my sixth year (seven year plan). It is what it is.

    There is no great choice; you can always try a medication and discontinue it if it's unbearable. Good luck!

  • kathabus
    kathabus Member Posts: 205
    edited March 2021

    There was a trial called the SOFT trial that determined that AIs were a bit better at preventing metastasis than tamoxifen in younger women. So that might play into things with regard to your MOs recommendation. If your oncotype score is in the higher side that might be an AI recommendation.

    I had an oopherectomy and I take letrozole. For what it’s worth Ive done great with it so far I exercise every day and I haven’t had any issues yet. I do worry about the bone stuff, but we do monitor things with a bone density tests. I take my calcium and vitamin D daily

    I agree with Elaine. You’re not married to it. If you try something and it doesn’t work out...there are options. There are a few AIs. Good luck to you!

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited March 2021

    According to all my doctors, Tamoxifen strengthens bones, unlike the AIs.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited March 2021

    Here's my two cents and experience: AIs had a difficult side effect profile for me, but I felt pretty good on Tamoxifen and Faslodex! I do not say that to be discouraging about AIs, but merely to point out that everyone has a very different experience with hormone drugs.

    I'm a big believer in giving hormonal therapies a chance, seeing how YOU respond, and going from there. Where you start out can be a logical decision, but where you end up can be the result of trial and error, or medical necessity. The different hormone drugs are quite different from one another, so if you have trouble with one don't be too discouraged. Best wishes whatever you decide.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited March 2021

    PS regarding a sex life, I do think that AIs are objectively rougher in that department. Tamoxifen does not cause the vaginal dryness that the AIs do...

  • AnnSOptera
    AnnSOptera Member Posts: 34
    edited March 2021

    ElaineTherese, kathabus, buttonsmachine, AliceBastable, thanks so much for your replies. All of that information is really helpful. It is also a good reminder for me that efficacy for preventing metastases should be my primary consideration and also that having choices now also means I'll have choices later, in case a med I'm on has intolerable side effects or creates other risks and problems. Many thanks again.

  • edj3
    edj3 Member Posts: 2,076
    edited March 2021

    And once you get your DEXA results, that may also shape your decision. I was post-menopausal but I've had two bones break from running so I'm dx'd with osteoporosis. That ruled out AIs for me, and my MO prescribed tamoxifen.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2021

    ann - just wanted to add to alice's post above, Tamoxifen builds bone in post-menopausal patients only. I realize you are post-meno, but because that is not specific in the header I didn't want any pre-menopausal folks reading along here to misinterpret. Something else to consider is that if you do decide on Tamoxifen speak to your gyn about a baseline uterine lining measurement, Tamoxifen can cause thickening and knowing where you are prior to starting may be important depending on your individual situation. Some gyn docs agree, others don't feel a baseline is important. Also, wanted to add that often it is the additives and fillers that create some of the side effects with aromatase inhibitors, in addition to the suppression of estrogen. I found that it was important for me to experiment with different drugs, and different manufacturers of those drugs - I did best with ones with the least inactive ingredients. Here is a link to a site that shows you what is in each one. Also linked is a non-insurance pharmaceutical site, that can provide brand name Arimidex by mail order. There are many who feel better on the name brand, not the available generics. Often insurance companies strongly resist authorizing the brand name because the generic is so much less expensive - some will if your oncologist writes the prescription that way, but I know my insurance absolutely refused. For me, I also found that an anti-inflammatory diet (lean clean protein, organic produce, no sugar, etc.) helped with joint pain, and the more I moved the better I felt. Agree with the members above - you can switch and experiment to find what works best for you. Wishing you the best!

    https://www.accessdata.fda.gov/scripts/cder/daf/

    https://www.eaglepharmacy.com/drug/arimidex

  • flashlight
    flashlight Member Posts: 698
    edited March 2021

    Hi, My daughter has RA and I understand your dilemma. I would also check with your Rheumatologist because of the biologic med and their side effects. What labs need to be done and who will order is also a good question. I know I'm older than you, but my MO said not to bother seeing my Gyn before starting Tamoxifen. I did anyway and did the transvaginal ultrasound baseline. Thickened lining is a side effect most MO's are not worried about unless you have bleeding. Make sure you get your bone density done before starting either med. Drink extra water and check out the supplement post. Best wishes.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2021

    If you are post-menopausal, then AIs are the first choice (unless you have bone issues) because they do give you a greater risk reduction as far as recurrence goes. I did 5 years of AIs. It took my body a couple months to adjust but after that I did fine. I was a teacher, wife, mother of a kid still at home, exercise buff etc. etc. and don't feel it affected my quality of life adversely in any area. I would go into it with an open mind expecting that things will go well, keep busy so that you can't dwell on it, and adjust if necessary. I would say to give whichever you go with a couple months before you make any changes as it does take some time to adjust.

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited March 2021

    I did 5 years of both which was protocol. They ended up stopping my AI before my last year was over because of bone loss that occurred. I did have to go on Prolia shots while on the AI.

    I was of the mindset to do what I could to keep cancer from taking over again on my other side or coming back.

    Still am scanned and still see MO but now on couple times a year now now.. They are not releasing me even now. Best wishes!

  • AnnSOptera
    AnnSOptera Member Posts: 34
    edited March 2021

    Thank you all so much for these incredibly helpful responses and especially for sharing your own experiences with AIs. This information has been great for the list of questions I'm putting together for my upcoming MO visit. I heard from my MO's office last night that my oncotype score is low enough to avoid chemo, which simplifies things I think. The NP also told me that if my DEXA result indicates osteoporosis, they can give me an infusion (perhaps Prolia?) every 6 months. I also saw my PT this morning for my final post-BMX rehab visit, and he gave me a bunch of strengthening exercises to help manage any joint pain from the AIs. So this information about potential ways to mitigate side effects is all very encouraging to hear, and I'm hoping for the best.

  • flashlight
    flashlight Member Posts: 698
    edited March 2021

    I would still check with your Rheumatologist if zoledronate or prolia would be better for your osteoporosis. Since having RA would give you a greater chance to be diagnosed with osteoporosis. That is why I decided on Tamoxifen. I go for my dexa scan next month. Good luck!

  • AnnSOptera
    AnnSOptera Member Posts: 34
    edited March 2021

    flashlight:

    Got it. Great point. My MO said she'd consult with my rheumatologist before we meet. If that hasn't happened, I'll make sure I connect with him before starting anything and check with him on that. Thanks so much!

  • ThreeTree
    ThreeTree Member Posts: 709
    edited March 2021

    Ann - Re if your Dexa shows osteoporosis, just putting another possible option out there that you might want to consider - especially if you are concerned about side effects of the bone drugs. I've been on letrozole for about 13 months now and before I started, my Dexa showed osteoporosis in my spine, and osteopenia in my hip. The dr wanted to give me bisphosphonates, but I was real concerned about side effects, so asked her if we could do a "wait and see" for a time. Well, during that time, I ate prunes every day (6 to be exact) and started adding a cartload of extra virgin olive oil to my diet, as I had read that both of those can help prevent and possibly improve bone loss. I had a follow-up Dexa last month at the one year mark and it showed no further decline. All I was hoping for was that things would've stayed the same or gotten a little better, and it appears that they stayed the same, so the dr. is OK with me continuing without the bisphosphonates.

    I believe that Ruthbru, who posts on here also did the prunes every day and that she managed to keep things steady too, with no bone loss during the time she took the AI. I have 3 in the morning, either cut up on cereal or I eat them whole, depending on what I'm having for breakfast. I also have a daily bowl of Greek yogurt every afternoon - full of walnuts and various types of fruit, and I add the other 3 prunes to that, cut up. I was just glad that all stayed the same and the doctor said we'd check again in 2 years. I work 4-5 tablespoons of extra virgin olive oil into my food every day also. It has to be extra virgin to get the benefit from what I've read. (Just noticed that Ruthbru posted above re having no problems with AI's. I believe she has also posted about prunes and bone loss quite a bit.)

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2021

    Yes, I am the prune (or as they are now called, dried plums) lady! Prunes can actually build bones. When I was on Arimdex, every day I ate a serving of dried plums, consumed yogurt and/or milk, took calcium plus D supplements, and did bone building exercises...light weights, walking, fitness classes etc. I finished AIs with the same levels of bone density that I started with. Of course, not everyone is as lucky due to genetics and/or other factors, but I think it's worth a try!

  • ThreeTree
    ThreeTree Member Posts: 709
    edited March 2021

    That was my feeling too, that it was worth a try, and so far, so good. No improvement after a year, but no further deterioration either. I also take a good 30-40 minute walk every day and started taking the stairs rather than the elevator, etc. I'll take prunes, olive oil, and exercise over bisphosphonates any day, as long as I don't get notably worse.

  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited March 2021

    I just finished eating some prunes - right before I read this. I didn't know that prunes could help with bone strength. I'm eating them to help with "regularity". I have mets to my bones and am getting monthly infusions of Zometa to help strengthen my bones.

    Glad I like prunes! :)

    Carol

  • ThreeTree
    ThreeTree Member Posts: 709
    edited March 2021

    Sunshine - The study I read about said that they had originally concluded that you needed 10-12 prunes a day, but that they then re-crunched the numbers somehow and decided that half that amount would be enough - that's why I settled on 6. Like Ruthbru said above, the preferred term these days is "dried plums". I read that too. I think they are trying to get away from the old stereotype about prunes. Something else I read said it was important for people to stop thinking of prunes as merely "the old people's laxative", because they are so full of all sorts of good nutrition and do all sorts of good things for us.

  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited March 2021

    Thanks, ThreeTree. I did buy some "dried plums" at Costco, since I couldn't find "prunes". Then I noticed that the fine print on the bag does refer to them as "prunes". :)

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2021
    If anyone wants some exercise buddies, go to the Working on Your Fitness Forum and check out the Let's Post our Daily Exercise thread. A great group of ladies at all fitness levels, stages of treatment and beyond. It's a fun & motivating place to hang out.
  • edj3
    edj3 Member Posts: 2,076
    edited March 2021

    Echoing ruth re our exercise thread, we're great fun (if I do say so myself).

    And since I know I've learned so much from others' experiences, I will say even though I did everything right regarding diet, weight lifting, running, etc. my bones are still crap. So don't be discouraged if that ends up being your situation too. Sometimes we can't outrun or out-lift the cards we're dealt with regard to health issues.

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