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Concerned about the side effects of anastrozole

Breast Cancer | Last Active: Nov 21 7:48am | Replies (1935)

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@cindylb

I have some thoughts on the AI's in general I'm going to share and I hope it doesn't get me kicked off this site (I love this site!)

When I was first diagnosed I was told NOT to go on sites, not to research, not to read anything but what they handed me at the doctors office because it would just scare and upset me and they were right. I went right ahead and researched and still do. The problem with research and reading and going onto support sites is that you will see the worst of the worst because people who aren't having symptoms or serious problems are moving on and living their lives but where does that leave those of us who just want to know and need to have the information? So, I read everything I can find and research every little thing because then at least I know what I don't have to worry about (ha ha).
The research I have done on the AI's shows all of the symptoms people on this site and thread complain of having. What we don't see is the people who take the drugs, have few if any symptoms and can use this treatment successfully and I'm sure there are many. However, that's not many of us and we need a place to ask questions, get support and get help deciding how to move forward. For those of us with symptoms from the AI's just know........the doctors will try to keep you on their program and on the pills as much and as long as they can because that's their job and that's what they do..........they fight cancer. They don't really know how you feel and how your quality of life day to day is affected and they don't really have any other options for you (at least not right now). The symptoms you are experiencing are unfortunately real and can be very serious. I know because that's been my experience.
I have had 4 oncologists in total for my care in the past five years and all of them recommended the AI's and all of them have pulled me off of them but then again, I have a small chance of recurrence anyway, so the decision was easier. But an important point to consider is this................the doctors will always recommend this treatment and will try to keep you on them if at all possible because that's what they do. They will tell you if you get bone issues, they have a drug for that. If you get depression they have a drug for that. If you get heart issues, they have a drug for that. It's what they do because the job of an oncologist is to cure or keep your cancer at bay....that's it. I am not saying doctors are cold hearted or don't care about how you feel, I'm sure they do for the most part but it doesn't change their protocol or options. AI's are a blanket treatment that works but for some the cost is too great.
If the AI's are causing you serious side effects it's time to ask your oncologist to explore additional options to either alleviate symptoms or possibly find targeted or immunotherapy or CBD/THC or............but please don't let them make you feel like this isn't really happening to you because as you see, there are many of us who can't tolerate these drugs and side effects.
I'm with all of you who are going through this because I've been there and still worry each day about recurrence since I can't take the drugs....but I couldn't get out of bed, couldn't function and couldn't enjoy my life. Push for treatment from your doctors that is tailored to you because it's your life and you need the support even if you can't fit into the bubble of care they have created.
Off the soapbox and many hugs to all

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Replies to "I have some thoughts on the AI's in general I'm going to share and I hope..."

@cindylb
AMEN!

Cindyb, Excellent post. I have been on Anastrozole for 21 months and am now having side effects. When questioning my oncologist in regards to how do they know it is working for me, he said he "takes it for granted" what?! When asked about estrogen test to see what anastrozole was doing and level of my estrogen, he said he didn't know if there was a test for that. I'm reading here that some of y'all have been tested and got results. What test did you have done, just a hormone test, estrogen and progesterone?? I am the point that I may look for another oncologist as my present one is just prescribing what is 'Protocol" and he is not looking at me at a human. I told him I did not want to be a lab rat and he got a little put off, Oh well.