Question about Tamoxifen, side effects and advice

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Gretellyn
Gretellyn Member Posts: 3
edited June 2020 in Hormonal Therapy - Before, During, and After

Hi,

I am nearing the end of my journey! I was diagnosed last June with Stage 1B, triple positive breast cancer, and had surgery to remove the tumor, insert a port and began my chemo/radiation course.

I have started taking the Tamoxifen recommended for the next 5 YEARS. Recently I have started having pain - soreness/bruise-like feeling in my left knee and right shoulder. Sometimes, I can barely bend my knees to get on the floor or up into bed, etc. And if something touches my shoulder if makes me look for a large bruise because that is what it feels like. Very tender. Have done some reading about Tamoxifen and joint pain/tenderness is a side effect as well as hair thinning which I am experiencing again at the hairline, and weight gain. I loathe taking drugs if I don't have to. From what I remember the oncologist telling me the chemo and radiation have brought my chances of recurrence down to 5%. The tamoxifen for 5+ years is supposed to eliminate that 5%. I'm considering taking my chances on that 5% if it means I can dump the drug and rely more on healthy choices and whole foods to not feed any POSSIBLE remaining cancer cells.

Anyone here have any experience? Anyone here choose NOT to follow through with the Tamoxifen?

Thanks!

Gretel

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  • edj3
    edj3 Member Posts: 2,076
    edited June 2020

    I tried it, I experienced side effects that interfered with my quality of life--I'm a runner, I run a lot (really a lot) and couldn't. So I stopped taking it.

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  • Each_day_2018
    Each_day_2018 Member Posts: 154
    edited June 2020

    Such a good feeling to be nearing the end!

    I heard a lot of bad things about Tamoxifen while going through chemo and radiation....knowing that was going to be my next step. At my age (31 at the time) they really didn't offer anything else. I opted to have my ovaries removed and take Arimidex instead, though it took some convincing. I'd heard the side effects weren't as bad and with 3 kids already, I knew I wasn't having any more. The side effects aren't bad, but I still have joint/back pain...I take a week off of the pills every 4-5 weeks.

    Try the alternative treatments board (can't remember the exact name) but I have seen a lot of supplements that can help control hormones. I am actually looking into this...Always check with your doctor though in case there are any interactions.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2020

    I took it for 4years. My MO started me out on Arimidex but it attacks the bones so she switched me after one year. I had osteopenia at the time. I was DX in 2011.

    I had the joint pain, trouble sleeping and a bit of weight gain. I didn’t have the hair thinning. I also had hot flashes worse than menopause. Fortunately none of the side effects lasted the whole time I was taking it.

    There are countless women who suffered debilitating side effects from it. Most of them stopped taking it. A few others switched to a different med.

    Quality of life is important. It’s a roll of the dice to be sure but you do what’s best for you. 5% isn’t that high a percentage although every precaution does help.

    Good luck!

    Diane


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  • Salamandra
    Salamandra Member Posts: 1,444
    edited June 2020

    Hey Gretellyn,

    First, you should know that there's nothing that eliminates risk. The 5 year risk is very low with treatment, but it's not 0, and certainly not beyond 5 years.

    Second, you should know that:

    1) many side effects of tamoxifen go away by themselves as your body adjusts

    2) many side effects of tamoxifen go away when treated with supplemental meds

    3) many side effects of tamoxifen can be managed/avoided by adjusting the timing of the doses and/or the brand (it's like hormonal birth control, there is no one best brand, just what works best for different individuals).

    --> Therefore, do NOT hesitate to share your symptoms with your oncologist. They should make a note of it, and will likely either tell you to stick it out and see if it lets up, or offer you advice to help relieve it, or both. To try a different brand, ask your pharmacist.

    4) there are other SERM options besides tamoxifen. I had some side effects from tamoxifen that did not go away with any of the above methods. I could not imagine continuing for even another 3 months, let alone years. But now I'm taking toremifene, and it's *fine*. Like not zero side effects, but completely tolerable. I can picture staying on this fo 10 years if need be.

    5) some premenopausal women do fine on OS/AI, better than on tamoxifen

    Third, what you wrote concerns me because you used the word 'rely' - "I'm considering taking my chances on that 5% if it means I can dump the drug and rely more on healthy choices and whole foods to not feed any POSSIBLE remaining cancer cells."

    You cannot rely on healthy choices and foods to prevent recurrence. Just as tamoxifen does not bring that 5% down to 0%, neither does healthy eating or lifestyle.

    If it turns out that you cannot find a tolerable way to take hormonal therapy, that is a valid choice. I came very very close to making that call. But you have to do it with eyes wide open. Healthy life/choices can decrease risk, but they do not eliminate it. And... keeping up those healthy life/choices often has an even higher attrition rate than hormonal treatment, because if it were easy we'd all be doing it already!

    This is hard. Share it with your doctor. If they are not supportive and creative thinking about ways to help mitigate symptoms, consider a different doctor. These are legitimate issues. But do please have a realistic risk assessment.

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  • edj3
    edj3 Member Posts: 2,076
    edited June 2020

    Salamandra wrote:

    But you have to do it with eyes wide open.

    She's 100% correct. I didn't make my decision lightly, and I also didn't make it without having tried tamoxifen. I needed to be clear in my own mind that I tried this treatment, and that I would be OK should my cancer recur.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited June 2020

    I need to speak to my MO about other SERM options besides tamoxifen. I've been getting by ok with annoying but tolerable side effects, but I was just diagnosed by a urogyn with <<severe vaginal atrophy>> caused by the tamoxifen. I'm 42. Apparently my vagina thinks it's 80 years old. It's not ok, and you just don't realize how bad something like that is until it happens to you. I can deal with joint pain and dry mouth, and hot flashes, but this atrophy is truly a horror show for me.



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  • BCat40
    BCat40 Member Posts: 241
    edited June 2020

    Ugh, gb, sorry you are dealing with that. One other SERM option is Toremifene. It would be off-label use for a pre-menopausal woman, but does not require ovarian suppression. There is also Raloxifene. It has not been approved for women who have already had cancer, only to prevent new breast cancer and prevent bone loss, but it could be an option to try before throwing in the towel if you can't take anything else.

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  • Gretellyn
    Gretellyn Member Posts: 3
    edited June 2020

    Thank you all! I did talk to my oncologist about my options and have been convinced to stick with it for the time being. I will be seeing a PT for some of my joint pain, which may actually be unrelated. Thanks again!!

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  • Ileepak
    Ileepak Member Posts: 31
    edited June 2020

    Dear Gretel,

    Thank you for your post. I have posted my experience on a few of these boards. I get confused with which what boards lol.

    I am 52 years old and not in menopause yet. I started tamoxifen last May and came off in September. Experienced dry mouth, terrible joint pain, terrible constipation, just feeling like overall crap. I sucked it up until September I noticed that my hair was falling out in droves. My husband had mentioned to me that he had been seeing a lot of my hair in the drain as well before I even noticed. I went to every doctor I could think of . . . one being the dermatologist at Sloan. No one had any answers as to when or if my hair would stop falling out or if it would come back. They would say "it SHOULD come back? I started researching it, there is very little info out there . . . I started reading blogs from other women's experience . . . some lost all their hair and it never came back. That sent me off the deep end, and I stopped taking it. I started on minoxidil . . . some hair growth, but my hair continued to fall out months after being on it. I had blood work done . . . you name it, I did it. It was not thyroid etc.and hair loss definitely does not run in my family, I know it was the tamoxifen.

    I have a visit with my medical oncologist next week . . . I don't know that there are other options that don't have the same side effects? But I am definitely not going back on the tamoxifen.

    Good luck . . . please keep me posted with how you are doing.

    Regards,

    Eileen

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  • Gretellyn
    Gretellyn Member Posts: 3
    edited June 2020

    My oncologist patiently detailed the percentages for me again (percent chance of recurrence after surgery, followed by chemo, then radiation.) He explained if i just stopped the 5-7% chance I would have a recurrence also meant it would be Stage 4 metastatic and incurable. This kind of convinced me to give it some more time for now. He explained the drug is systemic which means if it caused joint pain in my left knee, I would have it in my right as well. Aches and pains would be bilateral. So, he's thinking my aches and pains are for other reasons, thus my visit to the PT today. As far as hair loss, I have some thinning at the hairline/temples, but so far, the rest is coming back quite thick and wavy. I'll be watching everything and seeing how it goes. Do ask your oncologist though, as I know from some reading that there ARE other drug options out there that may not affect you the same as Tamoxifen did. It's so hard to know what is best to do!!!

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited June 2020

    Hey Ileepak,

    I couldn't tolerate tamoxifen side effects but I'm tolerating toremifene fine, which is another SERM class drug. It's off label for premenopausal women but my doctor thought the studies were there to support it.

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  • plumster1
    plumster1 Member Posts: 270
    edited June 2020

    Gretellyn, I have two months left on tamoxifen to complete five years. I remember at the beginning I felt a lot different and definitely had aches and pains. However, over time my body adjusted and I have my “new normal”. I am looking forward to August to see what life is like Without tamoxifen And create another “new normal”. I am happy I stuck with it!

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  • Sal462
    Sal462 Member Posts: 12
    edited June 2020

    Hi Gretellyn, I just wrote earlier, but noticed your post before I signed off and we sound so similar. Except for me it's a little longer, surgery last Jan so in addition to the usual "will I get side effects and how bad" I have to wonder if it's too late. I have also thought and tried, with mixed success, to eat better, how I ever eat sugar when there's metastatic cancer out there I don't know but somehow I still do. If I totally got off sugar I'd feel better not doing that Tamoxifen. Initially I had thought, well, I won't do it, 50% less of 3 or 4% is like 2% and it has a 2% chance of stroke plus all those "lesser" effects that just make you miserable. Also I already have trouble with dizziness and heard it could affect your inner ear. But a few months ago the metastasize thought got me very worried. I may try it if it's not too late.getting really worried

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  • gb2115
    gb2115 Member Posts: 1,894
    edited June 2020

    I have a telehealth set up for next week with my oncologist to discuss vaginal estrogen. I saw my breast surgeon and she said not to assume oncology will say no. Finally I feel some hope for my poor sad vagina.

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