I have seen my oncologist this morning and discussed my options re ongoing treatment and have decided I do not want to have hormone therapy and bone infusions as the percentage benefit was very minimal and I am high risk for severe side effects due to other health conditions.
My oncologist has given me the name of a clinic in where I can go for advice on how lifestyle, diet, exercise and supplements can help me stay as healthy as possible for as long as possible.
In the meantime I still have to finish phesgo injections and these will end in July.
I’d really like to make contact with other people who have either refused hormone treatment or had to stop it and hear what you do to keep as healthy as possible and whether you take any supplements etc.
Thank you
Have you read about cross-talk in relation to Her2, ER + breast cancers? There is a possibility that treatment of 1 receptor type, when you have both types stimulating growth, can lead to the other pathway being used instead to stimulate growth.
I stopped taking tamoxifen after a few months of lots of side-effects, for that reason as I’m in a rare situation of not being classed as needing treatment for the Her 2 ( its a rare form with unusual her 2 +++). As you had chemo and phesgo, it would be optimal to block the hormone receptors also.
Having said all that, if there is room for improvement with lifestyle changes, then that can knock a few percent off the chances, sometimes more than hormonetreatment would. I’ve always eaten fairly healthily and fairly active, so I’ve continued with that and drink a lot less alcohol now ( it went up a lot during covid tbf).
If overweight, there’s loads you can change to improve chances. Focus on a new healthier future in general.
Hello!
It is probably worth you having a look at he canceractive website https://www.canceractive.com/
There is lots of useful advice on here about lifestyle, diet etc to reduce your cancer risk, including recurrences especially with regard to oestrogen positive BC.
Good luck x
Thank you so much for the information. Really appreciate it.
Hope you are doing ok x
Hi, had mastectomy in June 2022. Have tried various hormone therapy treatments the last one being exemestane which has just been unbearable to take. Flushes bad, night sweats bad, aching legs and worst of all insomnia. Haven’t slept in months. Oncologist has agreed I come off them. Have been off them for 6 weeks and no improvement in symptoms. Does anyone know how,long it takes to get exemestane out of your system. In fact symptoms are worse than being on them.
Many thanks if anyone can help
I’m so sorry to read that @maz5 .
I don’t know anything about that drug.
Have a look at the other thread I started - called No Hormone Therapy Support - because there’s a lot more posts on that one and someone may have mentioned it.
Last couple of posts include a link for reporting side effects which you might want to do.
I hope that you can get some answers and start to see an improvement soon.
Xx
Hi Maz
I’m been on exemstane and Zoladex for 3 months. Fortunately the hot flushes are not to bad for me at present, no other side effects (yet).
From what I understand, exemestane has a short “half life” which normally means it starts to leave your system and strength quite quickly, hence the importance of taking it daily. I’m guessing you are post menopausal if your on exemestane. In natural circumstances, even after menopause your body can still generate estrogen from androgens. Although in lower “doses” to that generated from ovaries. I would guess that it may take a while for the estrogen to increase to a level which provides relief from some of the symptoms. But, I don’t have any factual info to support that theory.
It’s always best to consult your team on these things, and they may be able to offer help to ease your symptoms at the same time.
Many thanks much appreciated
Thank you for this information, I’ll certainly go into the link