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.

Awww @Sister sux huh? Once you get past the "active" treatment a couple of years I think we go right down to the bottom of the pile of anyone giving a hoot haha and left to our own devices. 3 years on Tamoxifen and you know my story. I just wish someone had of said at the beginning this shit show how much it would really affect your life. Not just a little "you may have reduced Libido and hot flushes". I don't have debilitating aches anymore but the rest of it takes it's toll. It messes with your moods which in turn messes with your relationships etc etc Whether that would have stopped me taking it, I don't know.I did read an article the other day (I'll try and find it) where they had said that a large percentage of those who got the whole works burger of treatment, especially if it induces menopause, where more likely to suffer a lot of side effects that say just surgery and HT. It also said that it ages you 10 to 15 years.I went digging again as I am really concerned about my brain...or what's left of it. My short term memory is deteriorating to a worrying point. I get disorientated easily, have to really take notice of new places and am generally vague a lot of the time. I set alarms for pretty much everything. At least they are acknowledging now that it's not just a stint of "chemo brain" It's the whole cocktail.So fuck it! I went off them for a longer stint this time. It's 6 weeks and I am only just starting to feel a slight improvement in the last couple of days. Not great like my breaks used to be just a miniscule bit clearer and no hot flushes for 3 weeks so that's been nice.I had the dream that once I stopped the drugs things would improve but it's been too long I think so goodness knows how it's going to be after another 7 years. You can come and visit me in the loony bin :)I try not to worry too much about it and just tell people I'm a ditz and laugh but it's really not all that funny to be honest.So ho hum., off to see the onc again on Thursday and I am sure she's going to want me to change to letrozole but that's not gonna happen. I feel for you lovely. xoxoxoxo

I'm prepared to say that Letrozole has ruined my quality of life. I continue depressed, highly anxious, touchy, with tears on a hair trigger and sore beyond belief. My bone and joint pain this spring has been the worst it has ever been. Last night I was woken at the ungodly hour of 3.51am by the pain in my right foot, and several times I have been woken from sleep by my own groans. I am always tired, often fatigued and my memory has gone to pot and is getting worse. It is mortifying the errors I am making. Libido 99% gone, dry skin, etc etc etc.I know some people take these drugs with no problems but I am not one of them. @Sister, @Zoffiel, @kezmusc, I see your pain and I recognise it. This has got to be one of the worst f******g drugs in the world.

Hi @kmakm Truly stinks! Again, I can't believe this stuff has been around for so long and nothings been done to tweak them to get rid of some of these side effects. I just re read my post, my god I can't even string a sentence together anymore. What the heck is going to happen when an 8th of the female population can't even remember what day it is ;)

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.

@sooziqu I felt a bit like you at the outset of treatment. Hormone therapy was my biggest fear based on what I’d read plus am also osteoporotic.A friend was quite blunt in explaining why I should. She told me a close friend went the alternative route and died.It pulled me up short. The first 3 years were pretty much fine as long as I kept mobile . The first 3months I was stiff in morning but I found I could walk thru it by a daily 1 hour walk. I also noticed sitting still for too long caused similar. Eventually my body adjusted and things were pretty good - I did not have chemo so think adjustment time may have been quicker than for chemo people. As I am 66 a few hot flushes didn’t phase me as been there done that - they have stopped.I have struck trouble last 12 months as I seem to have developed a propensity for soft tissue injuries - tennis elbow , plantar fasciitis and now bursitis in shoulders.They have been painful and taken months to heal.Whilst I think hormone therapy contributed I don’t believe it’s entirely the reason. One I am getting older and two I made some bad decisions - cleaning tile grout for hours with a toothbrush , wearing trendy very flat sandals walking a concrete path for a couple hours daily and tripping going upstairs. I need to take a bit more care and think before I act as the consequences are not fun and the physio expensive.We all have the right to make decisions regarding our own health with guidance from experienced medical staff who know more than we do. I choose to stay on hormone therapy as it gives me a greater chance to avoid recurrence and that’s good enough for me.Any side effects along the way I will manage.I agree with the members above I think 3 days is a very short time frame to make a call on hormone therapy. Might be better to discuss your issues with your medical team first.PS As I had an osteoporotic fracture at the outset I was put on Prolia injections 6 monthly which have built bone despite Letrozole thinning it. Many women are on it and I like them have no problems with it.

Will there ever be another way besides oestrogen suppression?

sooziqu
Member
5 years ago
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??
FLClover
Member
5 years ago
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.
CRM
Member
5 years ago
@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!
arpie
Member
5 years ago
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
Sister
Member
5 years ago
@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.
Smurfee
Member
5 years ago
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.
Romla
Member
5 years ago
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.
Romla
Member
5 years ago
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.
Sister
Member
5 years ago
@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.
Dory65
Member
5 years ago
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.