[Waffles903]

Need to change initial treatment - a bad sign?

by Waffles903 on Sat Dec 24, 2016 12:42 pm

Hello!

My fiance and father to our 18 month old was diagnosed in July 2016 at the age of 34. He was on the Velcade, Revlimid, and dexamethasone (VRD) program and doing great as of September. In October he got pneumonia and was in the hospital for a few weeks and off his meds. Ever since going back on the meds the numbers haven't been going down, only rising. We went to UPenn where he will be getting his donor (allogeneic) stem cell transplant, and we had everything scheduled for January and now because of this he cannot get the transplant.

We went to his doctor Friday to find out about his new meds and they informed us they were second generation meds. When he went to his doctor on Thursday and found out his numbers were very high, he said he felt the doctor was concerned and acted as if changing the meds was not a good thing. Is this true? Is having to switch to second generation meds something that usually works? As soon as the numbers get right (God willing), he is getting the stem cell transplant they said.

His transplant is coming from his identical twin brother.

Thank you so much to anyone who has had a similar situation or knows information that you can provide me!

[loveparis]

Re: Need to change initial treatment - a bad sign?

by loveparis on Sun Dec 25, 2016 1:31 am

I too had to change treatment after 3 cycles of Revlimid, Velcade, and dexamethasone (RVd). My numbers initially dropped, then just stopped moving. I then went on Kyprolis, Revlimid, and dex. That brought the numbers down slowly, but took 9 months until the doctor thought I was ready to go for the stem cell transplant. The doctor reassured me this was not a bad sign to switch and that some people responded better to an alternate drug.

Your fiancé is very lucky to have an identical twin as a donor, and have his treatment at UPenn. Best of luck to you both, and have a good holiday. Much to be grateful for.