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Bottle o Tamoxifen

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Comments

  • notdoneliving
    notdoneliving Member Posts: 41
    edited March 2016

    Hi all

    I've been on Tamoxifen since Jan 7 and have had some weird side effects that everyone has insisted aren't caused by T. I called my medical oncologist last week about them and had blood tests done, including thyroid. The nurse thought some of my symptoms sounded like thyroid. Turns out my TSH is "off the wall" (her words!). So I'm not crazy...everyone was poo-pooing my weight gain, including my partner. But it just wasn't right.

    Now I'm a little freaked out. My medical and radiation oncologists both thought my thyroid seemed a little enlarged and I've been sitting on a prescription for an ultrasound because work has been so busy. I searched for thyroid on the boards here and it seems to be sprinkled in a lot of places. It's all so sudden (all my bloods have always been right-down-the-middle normal). There's no chance my BC spread there, is there???

    Going to my primary tonight. Actually, the available doctor. <eyeroll>

    Thanks ((hugs to all))

  • Blownaway
    Blownaway Member Posts: 662
    edited March 2016

    notdone - did you have radiation? I was told that it could harm the thyroid and I asked to have my throat covered. They acted like I was nuts. Since treatment, My PCP has upped my thyroid pills twice and am about to have it checked again mid April.

  • stage1
    stage1 Member Posts: 285
    edited March 2016

    me too. I asked for a thyroid shield and they said they don't do that. Since then, I have had my thyroid prescription up twice! Since then, I have purchased online a thyroid shield to use for when I get mammograms. Don't understand their resistance to our protection and comfort

  • katcar0001
    katcar0001 Member Posts: 321
    edited March 2016

    Wow, I learn something new here all the time. I did not know that the thyroid gland was at risk from mammograms! I am going to look into that shield.

  • LovingIsLiving
    LovingIsLiving Member Posts: 89
    edited March 2016

    I ended up switching pharmacies because my current one was not willing to order the brand of Tamoxifen that I requested. Walgreens pharmacy was understanding and the medicine was ready the next day. By the way, little to no hot flashes now with magnesium!

  • labelle
    labelle Member Posts: 134
    edited March 2016

    According to my endocrinologist who I've seen for years due to thyroid issues (Hashimoto's) both radiation treatment and tamoxifen can affect one's thyroid. After I finished RADS she monitored me closely with blood work every 3 months because she said RADS could mess up my thyroid. No problems, but I did opt to have RADS in the prone positions and skipped having the supraclavical area done).

    Now that I've started taking Tamoxifen, she is seeing me every 3 months again as Tamoxifen can apparently change thyroid function or change how my thyroid meds are absorbed or both (I'm not quite clear which it is, only that the Tamoxifen puts me back on the every 3 months schedule). For anything thyroid, I'd definitely recommend seeing an endocrinologist. I let my PCP dink around with my thyroid meds for awhile after being diagnosed with Hashimoto's, but in retrospect, I should have gone directly to an endocrinologist.

  • twix71
    twix71 Member Posts: 2
    edited March 2016

    Has anyone had an increase in teeth grinding or bruxism since starting tamoxifen? I have had minor issues with teeth grinding on and off over the years, but have noticed a dramatic increase in the past few months since starting Tamoxifen in November 2015, most noticeably since the pharmacy switched my prescription brand from TEVA over to APO a month ago. I am actually doing the grinding in the daytime, not at night. So, the mouth guard my dentist made for me is not really very effective.

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited March 2016

    On the subject of switched brands: I have been on Watson for 15 mos, since I started Tamoxifen. Today, for the first time, my pharmacy gave me Actavis. Has anyone taken this brand? I don't remember seeing it on this board and I think I will call the pharmacy tomorrow to ask if they can order Watson and switch it out. I have enough for three weeks.

    UPDATE: I should know by now to Google first. Apparently Watson is now Atavis.

    http://www.drugs.com/manufacturer/watson-pharmaceuticals-inc-now-actavis-inc-150.html

    On another topic which was discussed recently, I asked my pharmacist about benadryl, because my allergies are going crazy with all the pollen. He looked it up for me, said their system has all the drug interactions and benedryl is NOT listed. For now I will not worry about it, but I will ask MO at next appt.

    Scottie

  • ksusan
    ksusan Member Posts: 461
    edited March 2016

    Scottie, check it on Drugs.com, where it's very clearly listed as a major interaction. You may want to revisit this with the pharmacist; it is alarming to me that their system doesn't see an interaction.


    http://www.drugs.com/interactions-check.php?drug_list=2145-0,896-1617&types[]=major&types[]=minor&types[]=moderate&types[]=food&types[]=therapeutic_duplication&professional=1

    image alt="">

    image alt="">


  • stage1
    stage1 Member Posts: 285
    edited March 2016

    Activas is the only brand I can take with no skin problems. I broke out with Teva. About teeth grinding.... Gosh I never thought it might be related to Tamox...but yes, my grinding started right when I switched to Tamox from Anostrosole

  • stage1
    stage1 Member Posts: 285
    edited March 2016

    Labelle, can you tell me what an endo does as opposed to the PCP for thyroid disease ? My script has gone up to 75 MCG and I am kinda worried, how much meds can I take. PCP tells me not to worry. Thanks for any help.

  • LynnBM
    LynnBM Member Posts: 15
    edited March 2016

    Thanks everyone for responding back to me about the SE of Tamoxifen. Has anyone experienced hair loss from the Tamoxifen specifically or loss of libido? I am fortunate enough that I don't have to take chemo so I know there is hair loss with that but I read that there is a possibility of hair loss with Tamo? Thanks

  • ksusan
    ksusan Member Posts: 461
    edited March 2016

    I have not had hair loss at 7 months. I'd say my libido is about the same as during this entire crisis--low but provocable.

  • Beachbaby65
    Beachbaby65 Member Posts: 39
    edited March 2016

    LynnBM, I take the teva brand and I have no hair loss or loss of libido. I do have joint pain, ed extremely dry eyes, and insomnia ( since. Chemo though), and chills. I take gabbapentin which is helping the hot flashes, and glucosamine chondroitin, which helps my joints. I also have sporadic muscle cramping that can be severe in the arch of my right foot, and my left calf. It's doable for me till I'm confident I'm in full menopause and can switch to an AI . I've been on the Tami for a little over a year now.

  • Suzanne50
    Suzanne50 Member Posts: 221
    edited March 2016

    In regards to hair loss - my hair thinned a lot during chemo but I didn't lose it all (I did penguin caps to save my hair). My hair is now growing in like crazy and I have been on tamoxifen for 3 months. So no thinning here! I do take biotin and use a shampoo to promote growth (can't remember name..).

  • lala1
    lala1 Member Posts: 974
    edited March 2016

    How many of you Tamoxibabes are post menopausal with the option to go on an AI but have elected to stay on Tamoxifen? My MO has given me the option and pros and cons of each and I can't decide what to do. Thoughts?

  • Blownaway
    Blownaway Member Posts: 662
    edited March 2016

    Lynn mb - I have. My hair came back beautifully after chemo, then when I started Tamoxifen, I lost a lot of it again.

  • Blownaway
    Blownaway Member Posts: 662
    edited March 2016

    lala1 - I'm on Tamo instead of AI because of osteoporosis.

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited March 2016

    ksusan. . .I had already looked at drugs.com and mentioned this to my pharmacist. In any case, I intend to ask MO when I see her next month.

    Thanks,

    Scottie

  • LovingIsLiving
    LovingIsLiving Member Posts: 89
    edited March 2016

    lala1, I'm like Blownaway and I'm on Tamoxifen for two years until my osteoporosis has improved. I would've liked to start on Arimidex or one of those drugs but it's too risky with bone loss.

  • lala1
    lala1 Member Posts: 974
    edited March 2016

    Blownaway and LovingisLiving---Did either of your doctors tell you the percentage difference in your recurrence rate? I've heard the newest trials, TEXT and SOFT I think, said there was significant improvement in reduction of recurrence by switching. But then my BS said it was really just a percentage point or two and that the possible increased joint pain as well as the potential increase in cholesterol and heart issues as well as developing osteoporosis makes it not worth the switch in his opinion. I just want to make sure I'm doing what I can to keep my recurrence risk down and numbers are what speaks to me.

  • ladyb1234
    ladyb1234 Member Posts: 1,239
    edited March 2016

    Layla, I am pre-menopausal but my Mo continues to check me for being post-menopausal. She has outlined to me the pros and cons of Tamoxifen and AIs and highly suggest that I go on AIs after being post-menopausal for I think 1 yr solid. She believes there is a significant improvement with AIs for post-menopausal women and only suggest I stay or go back to Tamixifen if I can't tolerate the Ai. She has me taking the test every 6 months. She beLieves I will register post-menopausal with my last test, which I just took and should get results on Monday, as I have been steadily declining since chemo and after pfc and tamoxifen. I have been on Tamoxifen for almost 1yr. She originally stated I would probably be on Tamoxifen for 2/3 yrs depending on how long it took me to become post-menopausal

  • keepwalking
    keepwalking Member Posts: 112
    edited March 2016

    lala1 -

    Count me in the post-menopausal camp - taking Tamoxifen due to already having significant osteoporosis. My MO plans for me being on Tamoxifen for 2 - 2.5 years and then switch to AI. I am hoping that it will greatly help the osteoporosis as I had a negative reaction to the bisphosphonates so am only battling it otherwise by eating lots of calcium foods/dairy and weight-bearing exercise (walking) . However, I have already seen a 40 point improvement in cholesterol level (!) after 3 months - now down to the normal range!

    To address recurrence rates: According to a study published in July 2015 (see here) recurrence rates were slightly improved for 5 years AI versus 5 years Tamoxifen. However, in comparing 5 years AI to 2-3 years Tamoxifen + AI for total of 5 years, there was no statistical difference in recurrence rates. So, I feel comfortable in starting out with Tamox because of the benefit in my situation (although it seems I am losing a bit of protection in the early years). But, if I can improve the osteoporosis sufficiently I will probably make the change to AI to increase the protection in the latter years and thereafter.

    As far as the Tamox side effects go, I am not happy about the 5 - 10 extra pounds, despite watching what I eat and exercising. But my hot flashes are actually better than they were before - have now just added cold flashes. I notice a few more aches and pains than I had before, but I wonder if that would be even worse on an AI?

  • BlueHeron
    BlueHeron Member Posts: 18
    edited March 2016

    I am young and post-menopausal, last MP at 45, I'm now 47. I'm on tamoxifen as I have osteopenia and I REALLY don't want it to get worse. Assuming I live to an old age (hopefully!), if I'm already osteopenia, brittle bones could have a very large impact on QOL as well as longevity.

    My MO said that yes, AI showed lower recurrence rates, but for low grade disease, the actual numbers are not that large so in reality the difference for me is negligible. It was, she said, mostly a matter of choosing my side effect profile.

  • lala1
    lala1 Member Posts: 974
    edited March 2016

    Thanks, ladies. This is helping me. My docs echoed your thoughts BlueHeron...."mostly a matter of choosing my side effect profile". I did have a sister who died of a heart attack about 8 years ago at the age of 39. She was overweight with all the usual health issues but it reminds me that I have to consider my heart health as well. I've read that the AIs can increase cholesterol levels, whereas Tamoxifen can improve them, but it's also easier to lose weight on them. I work out every day and watch what I eat but still can't lose weight. At least I'm maintaining though so I'm okay with that. I've had the hysterectomy so I don't have to worry about the endometrial cancer. And I go every year and have my eyes checked. I guess I could always try an AI and switch back if it's terrible. But as my BS pointed out, I am doing really well on the Tamoxifen so why upset the apple cart? And he said most of his patients report substantially more joint/muscle pain on the AIs vs Tamoxifen which usually leads to them quitting their meds. Anyway, thanks for the input. It helps with my decision.

  • notdoneliving
    notdoneliving Member Posts: 41
    edited March 2016

    Blownaway stage1 Thanks for your response! Sorry I haven't gotten back to you. Yes, I had radiation. Finished 12/29. That's great that you used a thyroid shield. I didn't know it could be an issue. I started synthroid yesterday. Low dose. We'll see what happens.

    I wonder if others who've had weight gain should have their thyroid checked

    Now I feel like I should go to a cardiologist and pulmonologist. Those are the things I was told could be affected.

    I've also been having rib pain. Anyone else?

  • notdoneliving
    notdoneliving Member Posts: 41
    edited March 2016

    labelle Thanks for sharing your info! I'm so glad I called in to my MO and talked to the nurse and nurse practitioner! I'd never heard anything about thyroid and no one thought my weight gain was a big deal. Water and exercise. Water and exercise. That's all I hear. I'm not doing enough of either, but I hate when things are thrown back on the patient.

    <end rant>

    Can people share about their supplements? Which, why...? Thanks

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited March 2016

    Notdone. . .I'm on calcium, mag citrate, multi vite, one for hair, skin and nails, D3, Omegas, and probiotics. I was on thyroid for several years before BC so just have my general physician keep me at a high end level.

    Scottie

  • loral
    loral Member Posts: 818
    edited March 2016

    lala- I'm on Tamoxifen because of bone loss and osteoarthritis..My choice not to take AL

  • lala1
    lala1 Member Posts: 974
    edited March 2016

    So what I'm hearing is that most of the people who are post menopausal and staying on Tamoxifen are doing it because of bone issues. If there were no bone issues, most would swap to an AI?

    And Notdoneliving--I've been having rib pain but have realized that it really only flares up when I do my strength training 2 or 3 times a week. I'm guessing I'm trying to lift too much for what my implant/sling can handle. Or else I'm trying to stretch too far in my yoga class. I've backed off a bit this week and don't have as much pain.

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