Forum Discussion
Will there ever be another way besides oestrogen suppression?
I've now been on AIs for over 2 years and, for me, the side effects are so debilitating or annoying. Constant pain, fatigue, possible concentration/memory loss (although may be also left over from chemo), dry skin, no libido, thinning hair, continual weight gain. I never realised until now just how much we still need the small amounts of oestrogen that our bodies produce after menopause. All of my symptoms are related to oestrogen suppression. I would dearly love to know whether there is any research being done on alternative methods of recurrence prevention for OR+ BC that focuses on something other than oestrogen.
43 Replies
- Hi Ladies, I've just recently been diagnosed with Oestrogen positive breast cancer grade 1 and was put on Arimidex. I lasted 3 days and stopped. I was super tired from the get go and had the worst sleep ever. 4 hours a night at best and not good quality sleep either. I also felt really flat, like there was no joy left in life. It made me FEEL like I was sick, whereas the diagnosis and current state of health didn't make me feel sick. I did some research that said Arimidex increased the chance of not having a cancer recurrence by 13 - 17%. Those odds weren't enough to weigh against my quality of life. I haven't told my doctor yet as I don't see him until the 2nd. I also have to have CT bone scans (existing osteoporosis) and 2 more core biopsies (2 other lumps found). On the 2nd he'll give me his treatment plan. I'll then give him my Arimidex news. He didn't want to prescribe Tamoxifem because of the risk of DVT especially considering I have yet to undergo therapy. Anyone else like me thinking of ditching the preventative drugs altogether??
- Hi @CRM. I’m taking Letrozole and also having monthly Zoladex injections. I’m due for one tomorrow actually. I’m 40, that’s why I need the Zoladex with the Let, cos Let can only be taken by post menopausal women and I wasn’t. Im finding the Zoladex very easy to deal with for now. I get occasional hot flushes but they’re short. Other than that I’m ok. But I feel so much better not getting PMS and my period every month. I had very bad PMS symptoms, and 7 day heavy periods with bad cramps, so this is like a holiday for me. The Letrozole has triggered stenosis though, I think, so I have tingly and numb fingers and have pain in my joints after I get up from sitting. But other than that feeling ok, for now.
- @Dory65 Did you find Zoladex better or worse than Letrozole? How does it compare? I am on Tamoxifen and Zoladex. I'm too young to have any of the other medications but just curious. I find Zoladex dreadful... thank God I am only having the injections for 2 years!
- I’m currently finding Arimidex better than the Letrozole and Exemestane that I started off on. 2 years on it now and finding isn’t anyhere near as bad as the other 2. Weird how what works for some, doesn’t for others. But I AM taking some ‘magic oil’ which offsets a lot of the side effects.
i hope your keep holds up @sister .... maybe wear a light elastic support for a couple of days, to help support it? Take care xx - @smurfee - can't "like" your post. I rolled over in bed last night and heard and felt my knee pop in a way that knees just shouldn't do. I did wonder if I'd be able to walk this morning (no problems) but decided that since I wasn't in pain, I'd worry about it when I had to.
- I previously tried Tamoxifen, for just over a year, had dreadful side effects, so was changed to Arimidex in April. I had one week of feeling great between the two. Initially I did not think the Arimidex was that bad, but over a period of 5 months I seemed to gradually get every side effect listed, horribly high blood pressure was a worry, and I was ready to be admitted to an aged care facility... at 55 years of age. My joints have very very slowly been improving in the 2 months I have been off Arimidex. I am still on anti inflammatory Mobic 15mg daily. I have just had an ultrasound on my shoulder that showed a rupture, capsulitis, tendonitis, bursitis. I feel like the tendonitis is systemic, so will chase that up with gp. I have been unable to exercise without my body objecting. I guess that if I equate to feeling like an 85 year old 2 months ago, I now feel like a 75 year old. I also have Hashimoto's thyroid, so that may influence the bad reaction to Arimidex. I also have 2 facet joints fusing in my spine, and this was not helped by the joint pains, and is now improving. My specialist has opted to leave me off medication as the medical risks on it were more dangerous for me than being off it. I will have to be vigilent.
- Btw I had sudden onset menopause in my early 40s with many side effects like hot flushes. , night sweats etc and worst of all I could not concentrate nor remember so I sort of get some of the issues some may be having due to hormone therapy bringing on menopause symptoms. At the time it made it hard to care for a young baby , run a demanding career and just function day to day. I am just a bit luckier now as am retired , my kids are adults and I accept a bit better my limitations than last time - still annoying and frustrating though. The physical side effects I now have I will try to learn how to manage.
- Well I’ll add to the debate with ongoing soft tissue injuries which occur too easily - tennis elbow , plantar fasciitis and now Bursitis in shoulders. Been on a 6 week break from Letrozole to try and shake it but starting back on 31/10 with follow up with onc 6 weeks later.Can only give my conclusion and call. Yes oestrogen does seem to be a critical hormone and suppressing it does seem to incline towards unpleasant side effects . My brain is not as acute as formerly but am 66 and been thru menopause 20+ years ago when my memory deterioration really shook me. I am retired now and trained myself to use my phone diary and a notebook plus I’m also used to it now and think I understand what’s happening so more accepting .
Re soft tissue injuries. Painful at times but finding ways around things plus good physio + care plan. I have concluded some of my former activities need modification unless I want a consequence. eg don’t stack tonnes of firewood , clean bathroom tile grout for hours and when walking distances wear appropriate footwear not trendy flat sandals.
Given my circumstances and what I’ve learned above I’m going to try to continue with Letrozole for another18 months to bring me up to 5 years and see how it goes. After that ???
Basically I think hormone therapy ages my body more quickly than I would like. However if it reduces recurrence risk I’ll take it. - @locksley If it's the one your onc prefers, give it a go - you may not have any side effects at all. And if you do, you can deal with it then.
- I concur with all of the above - sieve-brain, ditzy, aged 10 years in 6 months, aches in joints and now weirds pains in hands and feet, as if the connective tissue and tendons are inflamed. If I exercise, I'm in pain for days afterwards. I've got eczema on my face, particularly under my eyes. Never before. All of this since starting Tamoxifen then Zoladex and Letrozole. Hasn't even been a year yet. One would hope things settle down. If it just gets worse, I seriously question the sense of continuing.
