Sue_w1
3 years agoMember
Tamoxifen - efficacy of low dose treatment and reduction of negative side effects
I had hormone positive BC and was prescribed Letrozole, which I could not continue because of side effects. I was then prescribed tamoxifen, 20mg a day for eight years, but again the side effects really kicked my butt! Tried changing brands, some people have success with that, but it did little for me and I was really freak'n ready to tell them where to shove their medication...
...I even contacted my breast care nurse and rattled off the list of side effects I was struggling with. She contacted my oncologist who prescribed a low dose of Venlafaxine. I looked into that and it was only good for the hot sweats and had a host of nasty side effects of its own. I felt he had totally ignored the other issues I had spoken about. I can deal with the hot sweats, but the constant joint pain, weakness in my hips, fatigue, constant tears, cramps and RLS so bad I wake up with sore calfs, thighs and butt muscles - feeling like I ran a marathon in what little sleep I did get was wearing me down. I couldn't function like a normal person! Worse than all of that, is the effect on my mind, my creativity has fled along with my ability to focus - I just don't feel like me. Exercise, meditation, diet etc are not cutting it, I was ready to throw in the towel and junk the tamoxifen until I came across this study:
The Journal of Clinical Oncology (An American Society of Clinical Oncology Journal) :
Here are two excepts from the study:
"In the present phase III trial, we assessed whether tamoxifen administered for 3 years at 5 mg/d is effective at reducing DCIS, invasive recurrence, or contralateral breast cancer from breast intraepithelial neoplasia without significant toxicity in terms of serious adverse events and patient-reported outcomes."
...I even contacted my breast care nurse and rattled off the list of side effects I was struggling with. She contacted my oncologist who prescribed a low dose of Venlafaxine. I looked into that and it was only good for the hot sweats and had a host of nasty side effects of its own. I felt he had totally ignored the other issues I had spoken about. I can deal with the hot sweats, but the constant joint pain, weakness in my hips, fatigue, constant tears, cramps and RLS so bad I wake up with sore calfs, thighs and butt muscles - feeling like I ran a marathon in what little sleep I did get was wearing me down. I couldn't function like a normal person! Worse than all of that, is the effect on my mind, my creativity has fled along with my ability to focus - I just don't feel like me. Exercise, meditation, diet etc are not cutting it, I was ready to throw in the towel and junk the tamoxifen until I came across this study:
The Journal of Clinical Oncology (An American Society of Clinical Oncology Journal) :
Randomized Placebo Controlled Trial of Low-Dose Tamoxifen to Prevent Local and Contralateral Recurrence in Breast Intraepithelial Neoplasia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6601429/Here are two excepts from the study:
"In the present phase III trial, we assessed whether tamoxifen administered for 3 years at 5 mg/d is effective at reducing DCIS, invasive recurrence, or contralateral breast cancer from breast intraepithelial neoplasia without significant toxicity in terms of serious adverse events and patient-reported outcomes."
"CONCLUSION
Tamoxifen at 5 mg/d for 3 years can halve the recurrence of breast intraepithelial neoplasia with a limited toxicity, which provides a new treatment option in these disorders."
I am NOT a doctor or medical professional, just someone struggling with the effects of treating this bastard of a disease. I am going to use this study to start a conversation with my oncologist. I hope this information can help others who are struggling to start their own conversations with their medical teams too.
Tell me what you think...
Thanks Sue_w
I am NOT a doctor or medical professional, just someone struggling with the effects of treating this bastard of a disease. I am going to use this study to start a conversation with my oncologist. I hope this information can help others who are struggling to start their own conversations with their medical teams too.
Tell me what you think...
Thanks Sue_w