Do doctors ever prescribe aromatase inhibitors longer than 10 years?
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I took it for 17 years. My doctor and I agreed that "what's not broke, don't fix." She did not have the research to inform the decision, but in retrospect, I believe it held off my spread for many years. Now, after a few small spots were seen last December, I am on ribociclib. I credit the anastrozole for many years of extended life and am now clear of any visible metastases..
My wife, Jane is in her 16th year of treatment with Femara. Had to tell/demand that her doctor not to stop after what he said was protocol, 5 years. He relented. That was 11 years ago now. On a recent bone scan she has shown some negative results, but at 71 she still goes on hikes, walks, and does other physical activities without any problems. I don't want the femara to hurt her in anyway, but it is the only anti estrogen/cancer drug she takes. Any like to know of any other long term users and your experiences.
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Did you lose any hair? All other side effects aside – wish dr. had warned me about hairs loss!
My hair did thin a bit, but I had a lot to start with, so it was acceptable. I may have had some joint pain, but it was hard to differentiate from aging and known osteo arthritis. I still have it not on anastrazole, so I probably can't blame it!
I took tamoxifen for 5, then anastrozole for 10. I believe I should have stayed on it. I wish I had stayed on it! I asked to stay on it, the answer was no.
Did anyone here ask the doctor why you had to stop? What was the answer?
My guess is because it causes bone loss. I've had a bone density scan every year I've been on an AI. I hope to make it to 5 years – I'm not going to do 10. The insomnia is too much for me. I have like 14 more months to go to hit 5 yrs. I'm 67 now.
If you take a look at completed clinical trials that looked into this, you will find that no benefit was statistically significant for staying on AI after 10 years and possibly even for 5. Long term risks are bone mineral loss and elevated cholesterol… the things that are out of our everyday awareness of side effects.
I agree that it feels comforting to be controlling ( limiting) estrogen production when one, such as I , have ER positive diagnosis. I’m just starting month 5 !
I was on anastazole for 3 years, then Tamoxifen for 7 years. I didnt have any noticeable negative side effects from the treatment. 6 months after stopping Tamoxifen my cancer had metastasized to my liver and bones. Of course I can't help but wonder what would have happened if I had stayed on the Tamoxifen longer.
I was on a statin for years before my diagnosis and taking D3 oil has kept my vitamin D levels good. My density scans are all good. I asked if I could stop at 4 years – and Oncologist said no since all the studies are based on 5 years. She said taking it for another 5 yrs would only add less than 2% to my chances of reoccurrence. Not worth another 5 years to me – one has to balance life quality as well.
It’s always amazing to hear the range of different experiences out there. That’s why it’s so important to be with an oncologist that you trust and who explains the whys and the wherefores for each of our nuanced profiles… since we each have a unique profile. Definitely not a one size fits all!
So will you take the AI for the one more year then stop it? It's great that four years of the anti-estrogen drug didn't cause bone loss as that's a primary concern many women have in losing the so-called 'estrogen shield' protecting bones.
I've not seen the 2% risk reduction number quoted in studies but yours might be specific to your body and genetics. At any rate, it sounds as if you've done well and that's encouraging.
Yes – I plan to take exemestane to Nov. 2023 and then stop. Not sure where she came up with the 2% – but I have all the confidence in her. I also managed to lose some weight using intermittent fasting. The AI's are known also for weight gain. When I asked her about the AI adding to high cholesterol she said that was true. I'd also read about it adding to high blood pressure & high blood sugar – she said those 2 items were false. I go to a teaching hospital and my oncologist is retiring to teach new oncologists. I'm sad I won't see her again.
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