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?

Dory65
Member
5 years ago
Hope you recover swiftly @Sister. Damn these joint and ligament issues on hormone blockers :|
Sister
Member
5 years ago
Leaned over to pick up a book today (something you kind of need to be able to do when you work in a library) and must have twisted my knee a bit, I'm guessing...result is I can't walk without severe pain. Hoping it settles now I'm home.
Dory65
Member
5 years ago
Hi @CRM,
Just saw your question. I'm on Zoladex and Letrozole at the same time. Zoladex for 12 months, then a review. I'm half-way there. The Letrozole is for a minimum of five years, if I can tolerate it. It's difficult to say which side effects are due to either or both... my feeling at the moment is that Zoladex makes the joint and tendon pain worse, as it wanes just before I have to have the next injection, then worsens the week after. As with all of these things, I guess one has to perservere if possible. I'm hoping my body will adjust at some point. Six months of Tamoxifen on its own caused endometrial hyperplasia, which is why I'm now on the other stuff. I'm 55 but had not gone through menopause. My tumour was very hormone receptive, hence the need to shut down my ovaries. It sounds like you are younger. I hope you are feeling OK on the Zoladex/Tamoxifen combo. I'm no expert, but I believe the Zoladex will prevent endometrial hyperplasia. If you feel OK, stick with it. As may see from my and others various states of mind when checking in here at BCNA, it's a bit of a rollercoaster. I've had a hysteroscopy with biopsy and currettage of the uterus this week, then a bilateral mammogram/ultrasound. The waiting as a pubic patient was the worst part. The actual event (day surgery under general anaesthetic) was OK. Just waiting for the results now. All the best CRM. Lx
Romla
Member
5 years ago
@sooziqu Just a quick thought there are alternative hormone therapy drugs - sometimes a change of drug is enough to make things manageable but I think a 6 month trial is important before asking for a change.

Also many of us believe the fillers and coatings of our drugs can cause problems. My drug Letrozole has 8 different manufacturers all using different fillers and coatings. I used to buy my drug at various chemists depending where I was and one brand caused a bout of feeling quite depressed. I changed brand and all back to normal.If you were having trouble I’d recommend changing brand of manufacturer first before changing the drug itself.
Romla
Member
5 years ago
@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.
FLClover
Member
5 years ago
@arpie or the more pressing question might be, where do we find it?? 🤔😊
Locksley
Member
5 years ago
@arpie what is the magic oil you take for pain?
sooziqu
Member
5 years ago
Thankyou. I love my sleep and know my body pretty well. I also work and feeling like a zombie wasn't really cutting it for me. I could've persevered but would've had to do it when I wasn't working and with some sort of sleeping tablet. 13 to 17% isn't enough for me to feel like that but we're all different. I'll discuss it with my doctor next week and see if he has other suggestions. I'm also investigating alternative treatments to tackling oestrogen. Not because I'm a crazy hippy who distrusts western medicine and wants to do it natural, just because I want to feel good and as normal as possible for as long as I can. I'd gamble if the odds were better
Afraser
Member
5 years ago
Dear @sooziqu

i’ve been on Letrozole for eight years, it takes a while to work out what is a short term reaction and what is longer term and three days is hardly enough to do either. All sorts of things can conspire (having cancer for a start) to sleeping badly and feeling low! As you say, you have other issues to find out about, and certainly osteoporosis is a factor in taking an AI, so maybe you need to discuss your concerns further before ditching an AI. I am all in favour of personal choices about medications and quality of life but like @iserbrown, I think 13 - 17% is quite considerable. Best wishes for your forthcoming meeting.
iserbrown
Member
5 years ago
@sooziqu

Welcome to the forum where hopefully you can garner some helpful information.
The BCNA website is a wealth of information and has a counselling service which you may benefit from.

Where to find support | Breast Cancer Network (bcna.org.au)

Three days is such a short time for you to give up.

Types of breast cancer (bcna.org.au)

13-17% sounds pretty good to me

Hormone therapy | Breast Cancer Network Australia (bcna.org.au)

Take care