Just been put on this yesterday. I didn't read the side effects because I have no choice to take it. I had to come of my HRT with immediate effect and that has hit me the hardest, it really suited me and I have had the best two years of my life on it. Now everything has turned to crap and I'm facing a double mastectomy. Does anyone have any comfort?
The body may respond a certain way to the sudden change in the hormonal landscape, but it is quite possible that after a period of adjustment things would stabilise and become easier. Not sure what the time frames would be, but your team may be able to give an estimate.
I would also look into alternatives, meaning, since you are unable to take HRT, what options are open to you to mitigate the effects of that absence. It may be in the form of some supplements or in dealing with specific symptoms as they show up, and I would clear any new intake with the oncology team just to make sure nothing interferes with the treatment.
Regarding the double mastectomy: I have had two mastectomies, several months apart, the second one was like going through a double because my surgeon had to go into the original scar again. The only difference is that this time she left the lymph nodes alone. I actually feel more "right" now that both sides are the same, and am a little surprised that I am not missing my breasts as much as I thought I would.
I guess there is no way to know in advance how we would respond. Things that I thought would be hard turned out easier than I expected, and it also happened the other way around on some stuff, so I now figure that I should always try to prepare as best I can, but to remember there could be surprises (I am still facing one more surgery.)
I hope things turn out better for you too than what you may be anticipating. Do you have a date for the surgery?
I was put into a sudden menopause as I had hormone positive BC and it was intense. I'm also on exemestane.
My words of comfort are that it has got significantly better for me and now very manageable.
I still have hot flushes/night sweats but nothing like they were ans I'm not also trying acupuncture which seems to be helping (I've not had the full number of recommended sessions yet).
My oncologist said it takes around 6 months for the AI side effects to settle. Although I still have some painful joints and I'm more tried than I used to be, I am very much enjoying life.
Thank you so much for taking the time to reply. Best wishes to you. x
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