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Going my way: Decided to stop cancer treatments

Breast Cancer | Last Active: 8 hours ago | Replies (105)

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@marygrannie I understand where you’re coming from. I was originally put on Anastrazole and it took a few months to show side effects but finally after 9 months, he recognized the problems and said “you shouldn’t have to live in pain” and switched to exemestane. Started to see side effects at about the 4 month mark which progressed to major problems by about a year into it. I did suggest every other day therapy but he wouldn’t entertain that because it doesn’t meet standard of care. Did finally tell me to take 4 weeks off and call -I took 6 because it took me 4 weeks to just feel human again - but he wanted me to try it again, daily dose. I’m now off it again and ready to start letrozole because he feels I need to be on something and if this fails, will have to try Tamoxifen and I figure will have to argue the dose. The problem with all of this is it’s impossible to know the outcome. There are women who have declined everything and been clear for decades, others who get reoccurrences in a couple years. If you don’t take the meds, you just don’t know what the future holds and if it’s the second outcome, then you’re starting from scratch. I just keep plugging along following the recommendations but not blindly. I am on 3 forums and listen to what we all say on these forums - from the trenches as it were. And I research things that come up if they seem weird (they don’t recognize tinnitus as a side effect of exemestane but found 2 articles that show up to 56% of women get it while on the meds AND in my 6 weeks off, it improved about 60%). We just have to do what we can and what we are comfortable with.

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Replies to "@marygrannie I understand where you’re coming from. I was originally put on Anastrazole and it took..."

@mistymar Did you have hair shedding? Mine was awful. And only after 2 months. I’d be bald by now if I had stayed on it. I was very surprised when my oncologist said to simply stop
taking it. Caught me off guard, since he originally was pretty strong about asking me to “at least give it a try”. And I am glad that I did, but it was not something I could continue on, especially with only the 5% recurrence rate. Which I understand is not a “fact” but it is the
test they do to come up with the %. I will talk with him again later this year to see what might
be new but if side effects are the same, doubt he’ll suggest taking it. I am so jealous of those
who can take the pill and have no side effects. I’ve always been sensitive to any pills……if the pain pill says take 2, I take 1. I don’t take any daily medications for heart or bl pressure, etc.
Very lucky in that regard, just “sad” that I certainly had no luck in the world of going through cancer tears and fears. Best wishes and have a safe and Happy 4th!