HiTrying to find information about hormone therapy. I've had a lumpectomy and 25 radiation treatments. Now been prescribed exemestane. The information handout list of side effects on Enobosarm is frightening. I want to know whether taking hormone therapy is statistically worth the risks. Is there a reliable source of data on hormone therapy? I would be grateful for any info.Thanks, everyone.

Hi @Sooz If your oncologist has prescribed Exemestane ( I take it too) it will be because they think it will give you the best chance of survival. Basically, that is what it comes down to.I'm finding it more bearable than either Letrazole or Anastazole, but I still know I'm taking it. I've already had a recurrence--ten years after my first diagnosis--and I'm pretty keen to avoid another. I may be just buying time, but it's the best option I have. I think that is what you have to keep in mind. If you find it absolutely unbearable, then stop. But please, don't let anyone else's shitty experience influence your decision. If you want more technical information ask your oncologist for it. These drugs have not been in common use for all that long from a scientific perspective, so the longitudinal data really isn't there. We can only hope they work.Mxx

I asked my onc about Enobosarm the other day. He knows Prof Tilley so is going to check it out (as long as he remembers). And supposedly hormone therapy is the best treatment for ILC, with AIs being better than Tamoxifen. I wonder whether this new class of drug is also effective for lobular.@sooz You only hear from those of us who are struggling with the side effects. There's many out there who don't have too many problems.

@Sooz, the importance of AI therapy for oestrogen positive BC people is accepted by all the scientific-medical studies now and we are so lucky to have it as an option which was not the case in earlier times. But the side effects can be devastating for some, although there is no way of predicting accurately who will be in this camp and who won't. Many oncologists appear to be either oblivious or in denial. Most take the view that we should suck it up and be grateful. The extent to which AIs improve your outcomes in terms of survival depends on several factors especially the precise nature of your pathology, what kind of chemo you have had etc. The best online tool appears to be the British NHS calculator Predict. Many women on this network do not find statistical predictions helpful. I do, and am very grateful to have easy access to this information. My cancer was very well on the way at diagnosis with large tumours and a lot of positive nodes. So in my case the AI therapy adds a very large benefit to 5 year survival rate (but much less to 10) and I really need it to have a reasonable chance of a few more OK years. For others it may only add 1 or 2% benefit. So it's then a matter of weighing up risks vs comparitive benefits. I have been on Letrozole for 18 months now and although the joint pain can be blecchh at times I have been pretty lucky and wouldn't think of giving it up. But in the end it's up to you to consider your own situation. If you have a respectful oncologist to go through the issues with - one who is prepared to tell you the facts in your specific situation as far as possible and discuss it with you openly then that would be best.. Not everyone gets side effects, or at least finds ways to manage them. And new treatment options are developing all the time. Be strong, we're all on your team. Hugs, A.

Thank you. You have helped me put it into perspective.I went and filled the script today.

Hi @soooz Good to hear your active treatment is over - and now about to start hormone therapy.Don't be afraid of the side effects of the AIs - stay as active as you can as they say that exercise helps mitigate the side effects ..... Some women are very lucky & hardly have any side effects!! Fingers crossed that you are one of them!However, having said that - there are a lot of us who HAVE had side effects, the majority being major hot flushes & joints aches & pains - particularly in the hands/thumb & feet. If you have painful side effects within a matter of weeks, after 6 weeks, you can contact your Onc & discuss the possibility of changing to one of the other types of AItake care & best of luck xx

Hormone therapy facts? | BCNA Online Network

Sister
Member
6 years ago
The concern is always going to be is it at least as effective as current treatments.
Romla
Member
6 years ago
Bugger the UK trial on enobosarm is on hold it seems.
Romla
Member
6 years ago
Nice to know someone is listening to those of us on hormone therapy.

Professor Tilley emphasised the importance of patient well-being whilst being treated for breast cancer. ER-target treatments for hormone-sensitive breast cancers are often associated with debilitating side effects, leaving patients feeling miserable and even ceasing to take the therapy.
“We have been advocates for SARMs because they not only have the potential to prolong life, but they have the potential to make patients feel better while on therapy,” he explained. “This reduction in negative side effects is because the drugs promote bone, muscle and brain health.”
kmakm
Member
6 years ago
I asked my oncologist about it last week. She was working in the UK while the study began there, but really had no idea about it beyond that. I've since forwarded her this link.
Sister
Member
6 years ago
You could always try contacting him @zoffiel You never know what might be in the offing.
Zoffiel
Member
6 years ago
How interesting that Tilley admits AI can be responsible for 'debilitating side effects' Nice to hear someone admit that. Let's hope the SARM thing kicks off. I'd jump on a trial right now if I had the chance.
Sister
Member
6 years ago
I asked my onc about Enobosarm the other day. He knows Prof Tilley so is going to check it out (as long as he remembers). And supposedly hormone therapy is the best treatment for ILC, with AIs being better than Tamoxifen. I wonder whether this new class of drug is also effective for lobular.

@sooz You only hear from those of us who are struggling with the side effects. There's many out there who don't have too many problems.
Romla
Member
6 years ago
Here’s a bit about it - it’s also used to treat osteoporosis which can be a serious problem with aromatise inhibitors.

https://nbcf.org.au/19/drug-shows-new-promise-breast-cancer-treatment/
Romla
Member
6 years ago
There is an indication that Enobosarm / ostarine has significantly less side effects than other types of hormone therapy .Its been used for sometime in the body building community .Prof Tilley at Adelaide Uni and other researchers around the world are heartened by what they have learned to date.
Romla
Member
6 years ago
I think I also read that for my type of breast cancer -lobular Er+ - hormone therapy is the best option especially aromatise inhibitors.There’s a lot online to follow this point up.