Considering discontinuing AI therapy.

Hi Lulu...just want you to know you are not alone. IMO when you have other chronic medical issues to deal with the SEs of anti hormone treatment are much more difficult to deal with. I refused it from the start due to other debilitating chronic medical issues. I was just not willing to compromise my QOL any further. I do several things to lower my estrogen levels naturally. I have lost 30 pounds since diagnosis and exercise daily. I also take several supplements. I would be happy to share more information with you. Good luck and keep us posted

Lulu - Obviously, this is a hard decision to make as quality of life is so important , but I wanted to make sure that you were aware that your risk for recurrence on the oncotype test is WITH taking tamoxifen or an AI for 5 years. Trying to get more information from your doctor about without that AI sounds like a very good idea.

Lulu I am on a 3 month holiday from arimidex. My liver enzymes are elevated and also my ANA and Smooth muscle antibody. Sonogram showed fatty liver. My hepatologist says I need to be off till we figure it out

Joint pain stopped a week after going off it. I truly believe oncologists do not want to know about all these side effects. They are concerned about cancer only.

hi Lulu52, you may want to try switching to Letrozle/Femara before discontinuing therapy altogether. I started with Anastrazole, but experienced severe insomnia right away so switched to Letrozole. I experienced severe dizziness, vertigo and nausea after a year so I went back on Anastrazole but the joint pain and insomnia got so bad I went back to Letrozole, taking it at night so the dizziness and nausea were curtailed. I did not try Aromasin as I was put off by the fact that it destroys the enzyme rather than disables it, plus I'd read that insomnia & other SE's were much worse. But I have read other people's comments that they did better on Aromasin. So perhaps the moral of the story is to try all 3 to see which is the "least worst" for you.

Pupmom did you not see the first part of my post?

With a Masters in nursing believe me I know joint pain in itself can't kill unless it is part of a larger autoimmune inflammatory process like autoimmune hepatitis, which can.

Thankyou Marijen

Lulu you totally have the right to decide what quality oflife you should have. I support that but now 5 years later I wish I would have taken that stupid pill. It may not have changed anything but hindsight is 20/20. I hope you think and ask your onc for more options. However I think you have the right to decide. Its your decision.