After NEAD

LucyAnn68

Hi!

Has anyone had experience of being NEAD after taking Ibrance or Kisqali and stopped taking them?

I hear strong opinions both ways about stopping the med (of course I am still on Letrozole) but i would like to hear from someone firsthand if they have done this and their outcome so far.

History: dx 1999 stage 2, 2001 local recurrence, 2013 met to lung, T9 Arimidex put me in NED until 2017 my lung met reappeared on the CT scans. Took Ibrance and couldnt handle the toxicity and had pneumonia/neutropenia/dehydration. Took Kisqali the rest of the year and was not tolerating even the lowest dose. The lung met never changed all year. The onc even said scar tissue was a possibility. So this january i had a PET scan and it showed no active cancer/no metastases. My onc said i could go off kisqali and we would keep a close eye on it. So that is where i am at.

Thanks for any input!

holmes13

LucyAnn this sounds like great news! It sounds as though you have been NEAD the whole time. I have not achieved NED or NEAD at this time but definitly am hoping to get there soon. How often will you go back to get scans? I would be very cautious but if you go every three months then it sounds like a plan.