Chronic fatigue on Tamoxifen
Hi all, l am a year out from finishing chemo and almost a year after a double mastectomy. I am still experiencing chronic fatigue and am now certain it's from Tamoxifen, as l have changed the time of day, l am taking it and the fatigue has moved from the afternoon to morning. I am considering changing it to the morning and maybe the fatigue will be while l am sleeping. Has anyone experienced this and have any advice? I would really appreciate it, l want to improve my quality of life!!!
Tamoxifen
Hi all. I've just started taking tamoxifen 3 weeks ago. So far so good. However I'm flying to Sydney from Melbourne next week then a few days later Sydney to Gold Coast. A short holiday to celebrate finishing chemo and radiation. I know tamoxifen may cause blood clots. This has made me very anxious about the upcoming flights. Any info or advice you can provide is much appreciated.
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) : 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
Feeling "blue" on tamoxifen
Hello there, has anyone else felt flat, down in the dumps after starting tamoxifen? I have been on the little white pill 20mg for 2 months now, and my anxiety levels are also quite high, but I do have upcoming scans and alot of worries still. Any pearls of wisdom for helping to overcome my flatness? I exercise daily, trying to eat as healthy as I can. In all honesty I do miss a little bit of alcohol to help me relax!! Thanks ladiescancer treatments, brain fog and worsening ADHD
Ok so here is the question I have: Are there any other women out there with ADHD or suspected ADHD, who have found that their symptoms have got way worse after cancer treatments? The cancer, chemo, drugs that stop chemo nausea and tamoxifen can all cause 'brain fog' so what happens when that is layered on top of ADHD! Has anyone else had to deal with this?
Tamoxifen side effects
Hi, I'm new at all this so I hope I get it right, new to the group discussion process, 5 months since diagnosis, surgery treatment etc and now I have started on Tamoxifen. Can anyone give me hope the side effects will settle. Chronic nausea, insomnia, burning skin, dizziness, I can manage all that but it is the pain in my joints and bones that I'm really struggling with. I'm not usually an overly teary person but the pain has caused me floods of tears. I'm trying to find remedies to help manage the pain, and wonder if anyone else doing this journey has come across anything that works... I have spoken with my oncologist who tells me many women can't complete the treatment for this reason and I can stop whenever I want too... but then he tells me that if the cancer comes back a 2nd time it could affect brain, lungs or liver and would be stage 4 terminal... which kinda terrifies me that I don't want to stop taking the tamoxifen, regardless of pain factor. I've done heat packs, cold packs, magnesium, over the counter painkillers... unfortunately I can't do prescription painkillers due to allergies. Would absolutely welcome any advice. 😊
7 months post chemo and eyelashes falling out!
I’ve made it to my 1 year anniversary. Survived 3 surgeries, chemo and radiation, now making my way through the delights of tamoxifen! I was so pleased with how my hair has grown back and eyebrows and eyelashes until my eyelashes started falling out recently and breaking off. Has anyone had this happen? Not sure if it’s the fallout from chemo still or the tamoxifen?
Does Tamoxifen get easier?
Hello, I have been taking Tamoxifen for about 2.5 months and feel like I am increasingly feeling the side effects. I am about to return to work and concerned how to manage the hot flushes and more sensitive emotions, and not quite feeling normal. I went to a shop the other day and as soon as I walked inside unpredictably my body went into this bizarre melt down and extreme hot flush. Also finding sleep an issue. I am taking fish oil, magnesium and spoken to someone but those physical effects I haven’t quite got control over yet. i have been reading everyone’s posts and continue to wonder do the side effects settle down or do you just get better at adjusting to them? And how do you manage those hot flushes? Thank you!Tamoxifen side effects
Hello!! Just registered to the online community seeking some other people’s experiences with tamoxifen. I was diagnosed with DCIS in July 2019 at the age of 36. After having a lumpectomy and re-excision I then had a bilateral mastectomy And immediate reconstruction (expanders put in) at the end of September 2019. I also had a sentinel node biopsy at the same time. They removed two nodes and found 8 benign tumours in one node. I am now on tamoxifen for 5 years. It started off fine and then I started getting a real heavy feeling in my pelvis quite often. I mentioned this to my surgeon who said the tamoxifen can cause this. This has since lessened and I only occasionally get it. However in mid January this year I started having trouble with my bowel movements. Although I didn’t feel all that constipated I must have been at some stage as I was experiencing a lot of pain after a bowel movement. I saw a GP and spoke to my surgeon and they both said tamoxifen doesn’t cause constipation?? I was a little surprised as one of the side effects listed is constipation 🤷🏼♀️ I ended up seeing a specialist at the end of Jan/early Feb and he said I have quite a bad anal fissure. He prescribed a cream which did help but hasn’t fixed it. I’m finding the pain isn’t too bad for a while and then it gets worse again. The pain is so bad at times I can’t do a thing but sit and cry. The specialist said there is an operation that can fix it but there is potential it can cause incontinence. Obviously not something I want!! I guess I’m seeking others opinions and experiences with the tamoxifen. Have you had a similar issue, how was it fixed? I spoke to a lovely breast cancer nurse who said that it is an option to stop the tamoxifen for 4 weeks and just see how things go. I just don’t know what to do. I’m also thinking of getting a second opinion/talking to another breast specialist as I don’t always feel my surgeon has the time to discuss things properly. I don’t know if we’re allowed to ask for names of specialists or not hear?? I’m based in Adelaide. Sorry for the long waffly message! Thanks in advance x
Sandoz vs tamosil
Hi folks, Ive been on Tamosil for nearly 2 years but had to switch to Sandoz tamoxifen due to a shortage during Covid. I feel that I’m much more fatigued, with more joint pain than previously. Logically this doesn’t make sense to me, as the main ingredient is the same, in the same dosage. Anyone else had a similar experience or am I just going gaga?!