Forum Discussion
Sister
5 years agoMember
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
- SisterMemberI don't know if I want to laugh or cry at that @kmakm. It would be nice to have an option (okay - I know that not taking anything is an option but not really)
- kmakmMemberWell I've already made that mistake this week @kezmusc! Harrassed someone for a link for a Zoom class that wasn't actually on that day...
- kezmuscMemberHi @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 ;) - kmakmMemberOh yeah, thinning bones and raised cholesterol as well...
- kmakmMemberI'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. - SisterMemberI would love to hear more about his research but not finding too much - just tantalising glimpses of someone looking at it differently. Maybe there's a webinar in it @Giovanna_BCNA ?
- ZoffielMember@sister SARM are used for mets now. Not where we want to be and they are much more advanced versions than Enobosarm. Some of the stuff i was reading a couple of years ago indicated he was advocating using that basic version as an alternative for those who reject AI --one of those 'better than nothing' scenarios. Don't ask me to find that, my brain is a sieve.
- SisterMember@zoffiel I've been trying to keep up with Tilley and his enobosarms but what I can see on google is that it seems to be heading towards mets and use with AIs - not that I think there is anything wrong with that. I know that he is concerned with treating the whole person not just the breast cancer.
My latest is that it's becoming impossible to get blood out of my veins. I'm not sure if I can lay that at the door of AIs but I had a port during chemo (which was finished over 2 years ago) and all of a sudden, just this year, my veins seem to be shutting down. Two visits, three nurses, and six jabs later they finally the few mls they needed.
I was starting to get on top of the brain issues but like you, @kezmusc, it seems to be going downhill quickly - I struggle to focus and don't ask me what I did yesterday... - kezmuscMemberAwww @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 - ZoffielMemberI keep watching this guy https://researchers.adelaide.edu.au/profile/wayne.tilley
He's been chugging away at the hormone suppression problem for a while. I found the work he did researching the effect some of the SARM class drugs --specifically Enobosarm -- very interesting. And somewhat encouraging because I, for one, and Completely Over It when it comes to the AIs. I'll keep swallowing the overpriced bastarding pills, but at the first sign of a viable alternative, I'll be signing up for it.
The problem with research is you need to kiss a shitload of frogs before one of them turns into anything resembling royalty. There are also some disincentives when it comes to repurposing cheap existing drugs. Not that I'm cynical or anything, and I'm sure if there was serious benefits to be had, the money wouldn't be an issue...
We live in hope which is probably better than dying by whatever means. Hang in there, Chick, we've only got another 8 ears to go.