Tamoxifen and Auto-Immune Illness - Is it Worth It?

LCaro

This is the first time I have ever posted to this forum. I had a lumpectomy and early stage 1, 1.6 cm invasive ductal carcinoma with no lymph node involvement. My Oncotype Dx Score was 14. I breezed through radiation fine. I continued to exercise the whole time and worked every day. I continued gardening and my activities. I even worked my part-time second job after my sugery and during my radiation treatments. I just started taking Tamoixfen. I have been expecting the hot flashes and all of the other side effects people talk about, but I have not experienced those. However, I am so exhausted I can hardly go to work or exercise. It is all I can do to go to yoga or exercise class. I also have cognitive disfunction to the point I cannot think properly. I also have low blood pressure and low pulse and tried to faint.I am freezing all of the time. All of this started after I began the Tamoxifen. I don't how I am going to take this and hold down a job and since I am divorced, I have no other options. I also have an auto-immune illness similar to lupus which is under control. I have seen my rheumatologist regularly throughout this and he is onboard with all of the treatments. I went to the primary care dr. and all of my lab work was normal. I am strongly considering NOT taking Tamoxifen. I am premenopausal and only 48 years old. I did the BRCA I & II testing and gene testing and it was all negative. I know I will be taking a huge risk, but I have to be able to function. Are there any other treatments for premenopausal women. Would appreciate feedback.

jojo9999

I can only share with you my experience of being on tamox for 2.5 years - i get side effects but they seem to change often. I will have 3-4 weeks of bad hot flashes, and then they go away for several weeks. Same with the brain fogginess. It takes awhile for your body to adjust - and some people never adjust, it can be a tough drug. Spend some time reading the Bottle o Tamoxifen thread. I am getting ready to switch to an AI (officially in meno at 54) and find that I am reluctant to switch, worried about dealing with a new set of side-effects. good luck

SummerAngel

I have mixed connective tissue disease and had similar symptoms (among others) while taking Tamoxifen. I wasn't able to continue, even at a half dose. My experiences are in the Bottle o'Tamoxifen thread, late 2015. My oncologist gave me his blessing to quit because my SEs were so severe and I have a low Oncotype score.

Rakcat7

Hi. I'm not aware of any other meds to take. In 2014 had removed DCIS Stage 0 Estrogen +. Negative for brac genes and wasn't able to complete my last week of radiation due to a staphylococcus infection in the lumpectomy cavity. After months of treating that I was put on tamoxifen and my life seemed worse. I had every side effect you can think of, common and less common. After 5 weeks my doc had me stop it was 3 months before the side effects to leave my body. They included: dry skin, dry ears, constipation, neuropathy of fingers and feet, shooting pain in my stomach, HBO, unbalanced, anxiety, mood swings...you name it. Everyone is different but I'm glad I'm off it. The only thing I e thought about doing is having a hysterectomy to eliminate the estrogen. It's chemotherapy in pill form and it may work for you. Good luck. 

Anonymous

Has a PET CT scan been completed? If I had one and cancer was found I would want Xeloda pill. 7 days on and 7 off with 4 pills 2x a day is what I am on now. I did the hormone targeted therapy and for me it was not working.

Found your post in my search for Lupus experiences.