What problems have you had with Tamoxifen?

Posted by rosiemolano @rosiemolano, Apr 19, 2018

I was switched from Anastrozole to Tamoxifen due to hair thinning and joint pain, now I'm have intense itching and anxiety.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Several of you have mentioned breast cancer biomarker testing, like Oncotype. There are several discussions on Connect talking about this testing, for example:
- How did you decide on breast cancer treatment based on Oncotype? https://connect.mayoclinic.org/discussion/oncotype-result/

@shortie0650 I found this information about biomarker testing in Alberta, Canada. Alberta Health Services started funding OncotypeDx™ in 2014.
https://www.albertahealthservices.ca/assets/wf/lab/wf-lab-bulletin-odx-testing-in-alberta.pdf

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@colleenyoung

@shortie0650, my condolences for the loss of your sister. I can imagine losing both your mom and your sister to breast cancer heightens your concerns about your own cancer journey. I applaud you for doing your research, asking questions, and gathering evidence-based information along with the experiences of other women on this forum.

I wasn't able to find your actual diagnosis. Can you remind me of the type and stage of breast cancer that you have?

However, if part of your treatment plan includes an aromatase inhibitor or tamoxifen (a SERM), then you do not have the same type of cancer as your sister (triple negative). That means that your journey will differ from hers. It is also important to note that everyone experiences treatment differently. Many women have mild, few or no side effects with AIs or tamoxifen. They are less likely to seek the support of others on a forum like this. As noted in another thread arteminsinin is not a substitude for an AI or a SERM or hormonal treatment for estrogen-positive breast cancer.

You can read more on this informative website:
Hormonal Therapy https://www.breastcancer.org/treatment/hormonal-therapy
Hormonal therapy, also called anti-estrogen therapy, endocrine therapy, or hormone therapy, is used to treat all stages of hormone receptor-positive breast cancer.

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My diagnosis was invasive (infiltrating) ductal carcinoma NOS (not otherwise specified) Grade II with a 1.6 cm tumour and no lymph node involvement. I would love to hear from anyone who had no, mild or few side effects as this may help calm me. The oncologist has suggested that I take anastrozole - an AI.

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@shortie0650

My diagnosis was invasive (infiltrating) ductal carcinoma NOS (not otherwise specified) Grade II with a 1.6 cm tumour and no lymph node involvement. I would love to hear from anyone who had no, mild or few side effects as this may help calm me. The oncologist has suggested that I take anastrozole - an AI.

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There are a few people in the anastrazole groups who had little or no side effects. Myself included, definitely some hot flashes and a little joint soreness relieved with over the counter analgesics. I also had a very slight nausea for the first few weeks. That I might not have even noticed if I had taken it at night. Check out the anastrazole pages. How are you doing this weekend?

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@katehanni

Totally get it and thank you!

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Look at adding silica too. My hairdresser swears that adding silica to her biotin hair/skin/nails regime made a big difference. I'm looking at silica as one study I came upon noted the importance of orthosilicic acid to bone health and, as osteoporosis meds scare me, I hope to keep my internal scaffolding at no worse then mild osteopenia even if it makes cutting way down on coffee a good idea.

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Hi all. I am taking tamoxifen for over a year after trying all of the other 3. I have hair loss and a stubborn dry cough and a constant runny nose. X-rays are fine. Anyone else out there have similar cough.

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@shortie0650

My diagnosis was invasive (infiltrating) ductal carcinoma NOS (not otherwise specified) Grade II with a 1.6 cm tumour and no lymph node involvement. I would love to hear from anyone who had no, mild or few side effects as this may help calm me. The oncologist has suggested that I take anastrozole - an AI.

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Your situation sounds similar to mine. My oncologist prescribed Anastrozole following my radiation treatments. At first I didn’t notice any side affects. But slowly my cognitive functioning/memory became worse and worse. I did some research on this drug and found many interesting articles about the affects of lowering estrogen in women. The information I found was that indeed, side affects of Anastrozole can cause memory loss. It’s like going through menopause. That made a lot of sense to me. Of course there would be similar symptoms to menopause! During menopause our estrogen drops naturally, when taking drugs that lower our estrogen to prevent recurrence of breast cancer; we are dropping that estrogen even lower. Of course we can have the same side effects as menopause.

Next my oncologist put me on Tomoxifin. I broke out in some nasty hives all over my body. It seems that I am allergic to something in the Tomoxifin. Next we went to Exemestane and I’ve been on that for over two years. It’s not great, but I can tolerate it and it’s certainly better than a recurrence of breast cancer! I’ve learned to be grateful that my doctor and I have found something bearable. I’m in my late 60’s and grateful my cancer was found on a routine mammogram at an early stage.

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@colleenyoung

Several of you have mentioned breast cancer biomarker testing, like Oncotype. There are several discussions on Connect talking about this testing, for example:
- How did you decide on breast cancer treatment based on Oncotype? https://connect.mayoclinic.org/discussion/oncotype-result/

@shortie0650 I found this information about biomarker testing in Alberta, Canada. Alberta Health Services started funding OncotypeDx™ in 2014.
https://www.albertahealthservices.ca/assets/wf/lab/wf-lab-bulletin-odx-testing-in-alberta.pdf

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Oncotype DX testing is not available for those with HER2 Positive receptor, which I have. I wish it were. I am on Herceptin (3 months now) which is the only treatment for HER2 Positive breast cancer. Herceptin has caused severe lower back pain and stiffening, along with the usual fatigue, nausea, headache, G.I. issues. My echocardiograms are showing worsening side effects to my heart.

Regarding Tamoxifen, after two weeks I experienced severe nausea and abdominal cramps. I went off Tamoxifen and am considering stopping Herceptin.

Would love to hear others' experiences. Thank you!

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hi i had not 1 issue with tamoxifen ,i was on it for 5 years .and never missed a dose .In fact i did nso well he wanted me to do 5 more yrs , i said no thank you .

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I have been on Tamoxifen since November of 2013 and will finish my 10 years this coming fall. Not one single side effect. Don't even realise I take it. On another note I wondered how my bone density tests would fare after being on it for so long. I am 71 and had a new evaluation in December and absolutely normal ! No osteopenia and no osteoporosis. I take no other medications. Guess I am one of the lucky ones. Interestingly I had HER 2 positive breast cancer also and was put on Tamoxifen so don't quite understand what the difference is.

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I broke out in hives a day or two after I started taking it! It seems that I’m allergic to something in it!

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