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.

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@katehanni

I had the bone and joint pain from the AI's and when I failed to tolerate them and moved to Tamoxifen there is still some residual joint pain which as I understand it is not the Tamoxifen. I have osteoporosis already and Tamoxifen is known to have a positive effect on the bones...I'm not a DR. so don't take my word for it! Just repeating what I've been told by my MD who was thrilled to find that I could tolerate Tamoxifen.

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In a sense, tamoxifen has a positive effect on bones by not having the negative effect on them of total depletion of estrogen from the body. So estrogen remains available to perform the myriad roles it has throughout our lives. It just can't fuel estrogen-positive cancers because the drug prevents cancer cells' ability to access the cancer at the receptor level. They're both serious medications but, in a sense, the SERMs seem a more elegant approach by depriving only cancer cells, but not the rest of the body, of a key hormone. It's great that it works for you. It has saved thousands of lives so far, including two friends of mine.

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@callalloo

In a sense, tamoxifen has a positive effect on bones by not having the negative effect on them of total depletion of estrogen from the body. So estrogen remains available to perform the myriad roles it has throughout our lives. It just can't fuel estrogen-positive cancers because the drug prevents cancer cells' ability to access the cancer at the receptor level. They're both serious medications but, in a sense, the SERMs seem a more elegant approach by depriving only cancer cells, but not the rest of the body, of a key hormone. It's great that it works for you. It has saved thousands of lives so far, including two friends of mine.

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I took tamoxifen for 5 months because I liked the way SERMS attach to BC estrogen receptors rather than eliminate most all estrogen (I believe the ovaries still produce some) and that it is better for the bones and heart than the AIs. However I had immediate side effects that concerned me, especially pelvic pressure and terrible leg cramps. Finally I found I couldn't take the drug, even at a lower than 20mg dosage, due to worries about endometrial thickening and DVT, which are very serious. While I have just begun the drug, I am currently finding anastrozole easier to take. We all have to pick our poison according to what we can best tolerate. At least there is a variety to try.

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I'm wondering if anyone has explored tamoxifen hair loss in the context of not only how to try and keep some hair but what has worked for hair retention? I ask this because I run a bit cold at night and have been using a heating pad under my back, neck and lower back of head (where hair is), and I noticed that my hair is thinning significantly right where I had the heating pad. So I've been not doing that for a week and putting ice packs on the back of my head in hopes of seeing some improvement or at least slowing the thinning.

I totally welcome any and all ideas about how to keep ones hair while effectively keeping cancer at bay with Tamoxifen!!!

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As you point out, people's tolerance differs. I asked my oncologist about tamoxifen as an anastrozole substitute and he was opposed to it because of the DVT and less-likely ovarian cancer risks. And he likes Evista less,

I'm looking at osteoporosis treatments and the choices are either of dubious effectiveness (the older bisphosphonates) or side effects I hope to avoid but am getting ducks in a row just in case. My only current strategy is to hope diet, exercise and the vibration therapy stuff preclude ever needing to take any. The actress Bette Davis said "getting older ain't for sissies" in some televised interview my mother used to like to quote with a laugh when a new body ache showed up. Now I find that wry observation a tad more relevant, alas.

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@katehanni

I'm wondering if anyone has explored tamoxifen hair loss in the context of not only how to try and keep some hair but what has worked for hair retention? I ask this because I run a bit cold at night and have been using a heating pad under my back, neck and lower back of head (where hair is), and I noticed that my hair is thinning significantly right where I had the heating pad. So I've been not doing that for a week and putting ice packs on the back of my head in hopes of seeing some improvement or at least slowing the thinning.

I totally welcome any and all ideas about how to keep ones hair while effectively keeping cancer at bay with Tamoxifen!!!

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Strictly for what it's worth, I tried Biotin Forte (biotin with important zinc recommended for chemo patients by another renowned Clinic) to grow stronger nails. It didn't work so I gave it to a male friend who was in a long post-surgery rehab facility. It stopped his hair from falling out and he was in the throes of congenital male pattern baldness that left his male relatives shiny-domed. He ran out of it for a week and hair loss resumed at the former schedule and stopped when he resumed taking it.

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@callalloo

Strictly for what it's worth, I tried Biotin Forte (biotin with important zinc recommended for chemo patients by another renowned Clinic) to grow stronger nails. It didn't work so I gave it to a male friend who was in a long post-surgery rehab facility. It stopped his hair from falling out and he was in the throes of congenital male pattern baldness that left his male relatives shiny-domed. He ran out of it for a week and hair loss resumed at the former schedule and stopped when he resumed taking it.

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Totally get it and thank you!

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@callalloo

As you point out, people's tolerance differs. I asked my oncologist about tamoxifen as an anastrozole substitute and he was opposed to it because of the DVT and less-likely ovarian cancer risks. And he likes Evista less,

I'm looking at osteoporosis treatments and the choices are either of dubious effectiveness (the older bisphosphonates) or side effects I hope to avoid but am getting ducks in a row just in case. My only current strategy is to hope diet, exercise and the vibration therapy stuff preclude ever needing to take any. The actress Bette Davis said "getting older ain't for sissies" in some televised interview my mother used to like to quote with a laugh when a new body ache showed up. Now I find that wry observation a tad more relevant, alas.

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From a Marnie Clark recent email regarding Professor Jane Plant, a British geochemist who struggled with recurrent breast cancer: "Prof Plant’s breast cancer did recur in 2011, and she believes that there were several reasons it did. She had slipped off her strict diet, and she was under a lot of stress writing a new academic book. So she went back on her strict diet, incorporated more exercise into her routine, and began meditation. She also took tamoxifen. Sadly, Prof Plant is no longer with us but she didn't, apparently, die from breast cancer. She died in 2016 from a blood clot, more than likely caused by the tamoxifen she was taking." Jane Plant's book about her BC and diet is Your Life in Your Hands. This is not to imply that post-menopausal tamoxifen takers will have DVT or ovarian/endometrial cancer. They say the risk is low, but to me scary nonetheless. I too am doing what I can to preserve my bones, mainly supplements, diet, and exercise.

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I totally get it. Were dealing with serious drugs, trying to stave off a serious health cancer with imperfect choices. The good, albeit ironic news, that a friend mentioned when a different kind of cancer appeared a second time is her philosophical comment. Paraphrasing:

"'The way I look at it, I'm only alive to have this experience because medicine saved me the first time. Which is more than it would have been able to do 75 years ago. And borrowed time is better than no time. I was able to raise my children when that looked really unlikely for a while there."

I like the perspective she took. It's both hopeful and totally reasonable.

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@rosiemolano

I send prayers your way my friend, I worry that I am imagining my symptoms or that people will say I am but I know what I know. We are ingesting toxins to fight this toxic disease, my God be with us.

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I go to my first medical oncologist visit tomorrow and I am so worried. The surgeon had said I would need radiation and Tamoxifen after the partial mastectomy I had on Feb. 22, 2022. I feel exactly like you in that we are ingesting toxins to fight the toxins! 🙁 Really worried about side effects of both therapies.

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@azlane

I've been on tamoxifen close to two years. I had dcis, a lumpectomy (took one lymph node which was clear) and radiation (brachy). I've had some itching, I'm 61 so post menopausal, some discharge and feel like I'm ovulating sometimes. One side effect is endometrial cancer, so make sure you're getting checked with pap smear. No hair loss, dry/itchy scalp, dry skin. Just had my 5th mammogram (2nd 3D) and the radiologist wants another biopsy. Wondering sometimes why we are putting this in our bodies if suspicious calcifications are coming back two years in. No nausea but I've had insomnia since I turned 55, so that's not a symptom i can validate.

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I have been doing a lot of research on all the therapies, and in one of the articles it said that radiation can cause calcified lumps to form in the breast, but I don't think they are dangerous - just annoying. Good luck!

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