ja5747 @ja5747– Why are you replacing Arimidex? Did you have bad side effects. If so what did you experience?

I've been taking Arimidex for almost six years with no side effects. We would be changing to Aromasin primarily because it has been the companion drug to Afinitor in drug trials, but also because I was diagnosed metastatic 10 months ago. We can't say definitively that Arimidex failed, but changing from Faslodex to Afinitor seemed like the right time to also change the AI.

Hi @ja5747, there are a couple of members talking about everolimus (Afinitor) in the Neuroendocrine Tumor (NETs) group here: https://connect.mayoclinic.org/discussion/how-to-get-a-second-opinion-for-an-international-patient/?pg=2

Did you start taking everolimus yet? How are you doing?

Thank you for this post. It’s the first one I’ve seen indicating “no side effects”. Other posts are horribly discouraging. But, you’ve been on it 6 years, and with the return of a metastatic diagnosis 10 mos ago, it doesn’t appear to stop cancer, which it’s supposed to do. What a nightmare.

Hi Colleen, I took a look at the discussion in the Neuroendocrine Tumor group using your link and discovered that the Everolimus posts were from 2017 and the one person who had been taking it stopped after a few months, so unfortunately there wasn't anything there to draw from. I was to start this drug 15 days ago but my oncologist and I decided to hold off for a few months to see what my next scans reveal. In the meantime, I'm feeling good, thanks for asking!

Hi @samy. I wish I knew why my cancer metastasized, but the truth is the doctors don't know why some cancers come back and others don't. They do know, however, that tumor size and the number of affected lymph nodes are strong predictors of metastatic risk (I had high numbers in each category). Hormone therapy reduces that risk. Unfortunately it can come with side-effects for some women – I was fortunately to be one of those that didn't experience them. The good thing is that there are a few different drugs in the aromatase inhibitor family, so if one doesn't work, another might. Good luck!

I guess that wasn't a very helpful link. Sorry. Please do report back what you and your oncologist decide after the next scans.

I’ve replaced Ibrance/Letrozole (stopped working) with Afinitor/Faslodex 2 weeks ago. Religiously used Dexamethazone mouth rinse prophylacticly to prevent mouth sores and got them anyway a few days ago. They are awful! Anyone had success with treating them? BTW, for me the main Ibrance side effect was fatigue and that’s much improved with Afinitor.

My mouth sores are treated with a compounded mouth rinse, that I get at northwest compounding pharmacy. They are very generous about sharing recipes with medical groups in other areas. I do still get them but they are treated pretty quickly with this, and much, much less painful.
Have you talked to your doctor about this, and a possible different solution?