Struggling with Tamoxifen side effects
Hi All , My name is Christine, I have been on Tamoxifen now for 2 years and have always struggled with the side effects of Tamoxifen...I get them all! I have had 1 breast removed after being diagnosed for a second time with breast cancer 2 years ago.The first time 10 years ago I underwent radiotherapy ... I'm 48 yrs old. I am struggling with: Hot flushes Aching legs Struggle to keep weight off no matter how much exercise i do moodiness loss of libido fuzzy headaches generally changed me to feeling crap daily Interrupted sleeping patterns Constantly going to toilet I have spoken to my doctor who suggested anti-depressants which helps with the hot flushes but i am reluctant to take them due to other side effects. I have suggested stopping Tamoxifen to my doctor who advised it would reduce my life span by 2-3%. I have a friend in a similar position as mine and she stopped them with no issues to date (8 years) and is urging me to stop. Does anyone suggest alternatives or make comment if stopping Tamoxifen is irresponsible? Any help or suggestions are much appreciated. It is really affecting my life, my personality, my thinking and made me a completey different person .. I was once strong physically, mentally and spiritually ......its also affecting my husband..anything he can take?..lol Christine xx
Tamoxifen and dizziness
Hi, I have a question about dizziness and tamoxifen. I have been on Tamoxifen for 19 months now and at first I didn't really have any side effects. But for the past few months I have noticed an increase in the hot flushes and night sweats but my main concern are the dizzy spells. They are now pretty consistent and have been for the past 4 months, every day now and I am also just feeling a little 'off', can't put my finger on it but just a bit fuzzy in the head!? Forgetting things, lack of concentration etc. I think I am going to stop taking it for a few days and see if that makes a difference, if that doesn't work then I will try taking it at a different time of day. Has anyone else experienced dizziness coming on after this length of time. Does anyone have any other suggestions that I can try? ThanksTamoxifen
Well woo hoo is what I say! I had seen on the news last weekend that some drugs had been reduced in their end price to us the patients. Well to my surprise I needed to pick up my next pack of Tamoxifen (Sandoz brand) and instead of the usual $38.50 today's price was $19.50!! Woo hoo!! I hope that translates to other drugs that we all have to purchase
Breakthrough bleed after first dose???
Hi all, after finishing 15 rounds of radiation therapy, i took my first dose on tamoxifen at 10am this morning, only to develop a breakthrough bleed by 5pm. I am perimenopaul and my last period was in Nov 24. I will be contacting the Doctor tomorrow but has anyone experienced this? Do these bleeds stop on their own? Thank you in advance.
Early Breast Cancer Treatment Decision
Hi All, I recently was diagnosed with early breast cancer (stage 1, grade 2, HER Negative, Estrogen & Prog positive, no lymph nodes involve) three weeks ago I had a double mastectomy with tissue expanders for reconstruction. I now need to choose my treatment for post surgery. For my particular case the percentage for survival purely doing the double mastectomy surgery alone is 95% when I add hormone blocker treatment it adds another 1% so 96% total which has been recommended by my oncologist to take which I will. I have been also given the option to decide if I want to also do chemo or not, the percentage benefit for my specific cancer is less than 1% at about 0.3% (so the percentage still stays at 96% survival) Is there anyone with a similar case to mine and what you decided? Or if it was you what you would do? My immediate thoughts are for a 0.3% benefit that going through 6 months of chemo with everything that comes with that is perhaps not worth doing it? The other thing I will point out is if there are any tiny microcells left in my body anywhere that hormone blockers will stop them dividing and growing, but chemo would actually kill them. Bearing in mind there is no guarantee either way that reoccurrence will or won't happen. Thoughts?Lower dose tamoxifen
I have taken tamoxifen 20mg for 6 years,I have now had a year off tamoxifen as I stopped taking due to side effects, my oncologist would like me to persist and start taking it again as I’m in my 40s and he considers this young. my surgeon said I could just take less,he said there has been research that says it may be as effective,or I suppose it’s better than not taking it, has anyone doctors been happy for them to take less tamoxifen than 20 mg? And if you take less have you noticed an improvement in the side effects? If so do yo take 5 mg or 10 mg a day?
Tamoxifen
Hi everyone. As everyone was so helpful with my radiation burns post, I thought I’d ask another question. I started Tamoxifen 4 days ago and I’ve just started spotting. Is this normal? I remember my oncologist talking about looking out for vaginal bleeding but i didn’t expect spotting so quickly. I thought she met in a few months time. My period is also due in 5 days so it could be related to that. I’m assuming this has to do with my estrogen levels dropping? Just trying to work out what’s normal & when to contact my oncologist.
Hormone treatments, tamoxifen and tendonitis
Hi there, I'm very new to this, but wondering if anyone has experience of tamoxifen and tendonitis? I've had two different types of breast cancer, but one side was HER2Positive so since January this year I have been on anastrozole. In late July I got extremely painful tendon damage - a torn and swollen hamstring tendon near my seatbone, so it really hurts to sit, and two other gluteal tendons with tendinopathy as well - no idea what set these problems off, but discovered that anastrozole, in reducing oestrogen, weakens tendons. My Oncologist said suspend it, so I haven't been taking it since early August. She later offered me a script for Tamoxifen instead. As Tamoxifen also is designed to reduce oestrogen I am wondering whether I should switch to it or not? I don't want a breast cancer recurrence, but my life quality at the moment is much affected by the tendon problem which is not healing very quickly at all. It's going to take many many months I think. If I take tamoxifen now will I slow down the healing? What should I do? Anyone out there had any experience with tamoxifen and tendons? Thanks for any experience you can share with me!!!
Craig Jordan - the 'father of Tamoxifen' and anti-oestrogens has passed away
Craig Jordan (who discovered Selective Estrogen Receptor Modulators (SERMs) and developed breakthrough breast cancer treatments), died June 9, 2024, at his home in Houston, sadly from renal cell carcinoma. He was 76 years old. He was born in the USA but went to the UK as a child & did all of his medical training in the UK but eventually relocated to the USA, where he died. An interesting write up on him, here - apparently Tamoxifen was initially used as contraception (but in fact, it increased fertility!) He applied it to blocking oestrogen in women with breast cancer - and it has been used ever since. https://www.mdanderson.org/newsroom/md-anderson-celebrates-the-life-and-legacy-of-v-craig-jordan-PhD.h00-159698334.html And info from Wikipedia: https://en.wikipedia.org/wiki/V._Craig_Jordan
Zoladex & Letrazole or Tamoxifen or Remove ovaries + Letrazole
Hi all :) Firstly, this forum is amazing and I am so grateful for it and all of you who take the time to share and respond. When you feel like no one else can relate it really just gives one comfort. Im 41, was HER2 positive, chemo & surgery done. Mid way through radiation. I have been on Zoladex from during chemo (8 months) Chemo side effects were minimal and it was effective, I perhaps did not notice side effects and was running on adrenaline or in survival mode. Now that, some time has passed I have noticed some side effects that are bothering me and want to get off Zoladex but chatting to my oncologist about it, her recommendation is to stay on zoladex Bone pain, fatigue, hot flushes, irritability, disturbed sleep, belly fat, weight gain :( are the side effects I have been experiencing. Not to mention the injection can be painful. I have to have herceptin for the next year every 3 weeks and zoladex every month for 5 plus year and the letrazole for minimum of 7-10 years. These are my protential options Zoladex & Letrazole Tamoxifen Remove ovaries + Letrazole I guess what I am looking for is to hear about your experiences or route you took and whether the symptoms subside or anything to manage them. Does eating better and exercise really help with the weight gain or is it inevitable? Look forward to hearing from you. Feeling overwhelmed today
