side effects of Tamoxifen

[suryakaizen]

I joined Health Unlocked in 2016 when my daughter was diagnosed with both breast cancer and diabetes. She was 36 at the time so it was the full works in terms of treatment. She underwent a lumpectomy in her left breast, chemo, radiation and has been on hormone therapy - 1 tab of Tamoxifen a day since 2017. She must have it for 10 years i.e. upto 2027, as a preventive against recurrence of the cancer.

All was okay for 5 years, Then, from last year she began to have incidence of joint pain in various parts of her body. Also, stagnation of lymph in the affected arm leading to painful swelling in shoulders, arms, fingers, wrist. Her oncologist says it’s not due to the Tamoxifen . And they it must be arthritis. But I do know from others that the hormone treatment does have side effects.

Any advice on easing of the side effects, sharing of your experience or supplements you suggest are very welcome. She doesn’t want to take more and more meds as she is fed up with meds she is taking already!

[mathematics]

I can understand your daughter not wishing to take more medication as that is how I felt. I had swelling in my one arm and also my ankles would swell up, which they attributed to bad circulation. I was fed up but found someone who was a trained and a certified massage therapist and she did wonders on my arm it went down considerably. I did go along to a lymphedema clinic as well with the NHS who trained me on massage and gave me sleeves and stockings to wear. I was on tamoxifen 5 years then letrozole 5 years and I did not get pain in my limbs etc., but I did put on weight which I could not budge. I have recently managed to lose it however after being able to come off letrozole. I was getting other side effects that the doctors did attribute to the letrozole. However I am glad I persevered and took the tamoxifen and letrozole due to the benefits of stopping the cancer reoccurring. Take care

[suryakaizen in reply to mathematics]

Thank you mathematics for sharing that. We don’t have lymphedema clinics here in Bangalore. But I will not to ash my daughter’s oncologist if the hospital where we consult has one. Thanks again.

[Cu4281]

Yes - Me Too. My doctor said the alternative is worse. These cancers can be nasty. But I totally agree. 2017 is when I had my lumpectomy and radiation therapy. No chemo though, I was lucky in that aspect. I have been switched to a couple different aromasin inhibitors including letrozole which was horrible for me. I stopped myself for about 3 months and then came back on to the tamoxifen which then seemed to be a breeze. But now I have been back on that for several months past my 5 year mark (they want 10) and I am back tho having more side affects again. The best I felt was when I had been off for 3 months. However, if the cancer returns - that would not be good so I am trying to stick with it a bit longer. It really is easier on the tamoxifen tho than the other ones. They also seem much harder on bones and joints. I have talked to some that stopped after 5 years. Plus there is a test your dr can order but insurance mostly doesn’t cover it. To see if it will be effective to stay on the meds.

🙏🤝good luck with your decision

[suryakaizen in reply to Cu4281]

Dear Cu4281 thank you for your reply. My daughter's onco too says that Tamoxifen is the one pill with the least side effects. But says the joint pains are not because of it. (At these times, I want to tell the oncologist to experience the pain and see for herself how it feels ☺️). Maybe their job is also to deny, deny deny!

The pains too are pretty severe some days. Now from the past week, her shoulder joints have been paining a lot even through the day (the pain usually intensifies in the evenings and nights). She takes an NSAID (Combiflam) for the pain when it is severe. And her finger joints swell up and pain. She says the best thing is to grin and bear it and wait for the balance of 4 years to run. In the meanwhile she does a set of exercises every day to stimulate the flow of lymph so it does not congest and cause pain (she had a bad bout of that for a week, it was horribly painful, she says.

My daughter Aisha doesn't want to join HU, she says its one more thing to cope with. But I share all that I read here in this community. Thank you so much for sharing.

[suryakaizen in reply to suryakaizen]

Cu4281 and mathematics thank you so much for your concern and sharing. I just wanted to add now that my daughter has been doing some physiotherapy exercises for reducing lymphedema in her left arm- a result of the breast cancer surgery. Then yesterday, both of us went through a series of lymphatic massage exercises for reducing lymphedema developed by the Universal Health Network - Patient Education Program of Canada. Its called "How to do self lymphatic massage on your upper body" and is intended for patients who were treated for cancer. It took about 20 minutes to go through. It has worked wonders. My daughter slept without pain medication, without pain - through the night. I'd like to share this reference with you. Visit uhnpatienteducation.ca for more information. I'm sorry I'm not able to attach the document here as the HU app permits attaching of images only.

[mathematics in reply to suryakaizen]

So glad your daughter may have a solution other than meds to control her pain hope it keeps working take care

[Artist_B]

I also developed joint pain one year after starting tamoxifen but was told it was not due to the drug. Hips, knees, shoulders. Limiting my mobility. I take 20mg daily for 5 years. I think she needs to keep searching for answers.