[Christa's Mom]

Results of treatment for first relapse?

by Christa's Mom on Thu Sep 29, 2016 3:32 pm

EJ has come to the end of his treatment with Ninlaro (ixazomib), Revlimid, and dexa­metha­sone. He's had a rough 8 months, but mostly for things other than these drugs! In all, he com­pleted 5 full cycles and 2 partial cycles. One cycle he missed completely. He had no side effects from the Ninlaro, but struggled with both the Revlimid and dexamethasone.

His M-spike has gone from 0.7 g/dl (7 g/l) to 0.2 g/dl (2 g/l). I'm really happy about the im­prove­ment, but not exactly sure what it means. After his stem cell transplant, his M-spike was 0.1 g/dl. He was hoping that he would get down to this again. Was that even a reasonable expectation?

I'd love to hear others experiences with their treatment at first relapse. EJ is going to be taking a month break from treatment, and then start back on a low dose of Revlimid for maintenance. I'm also curious to know if his M-spike could continue to improve on maintenance.

Thanks!

Lyn

[NStewart]

Re: Results of treatment for first relapse?

by NStewart on Sat Oct 01, 2016 11:09 am

When I relapsed I started Revlimid and dexa­metha­sone again. I had achieved a complete response with my transplant and had almost 3 years drug free before I relapsed. In about 3 months of Revlimid and dex again my M-spike dropped from >3.5 g/dl to 0.5 g/dl (> 35 g/l to 5 g/l). That was what my m-spike was when I had my transplant. It hasn't gone lower than that in the almost 3 years since I restarted treatment. Because of developing more side effects from long term Revlimid and dex use and having to lower my doses, my M-spike has risen to around 0.9 g/dl, but it is steady and my other numbers are good.

EJ may achieve a lowering in his M-spike over time, but as long as it remains steady he should be good.

Nancy in Phila

[Christa's Mom]

Re: Results of treatment for first relapse?

by Christa's Mom on Mon Oct 03, 2016 11:56 am

Thank you for sharing, Nancy! I really appreciate it. Hopefully his M-spike will hold where it is for a good long time.

Lyn

[TerryH]

Re: Results of treatment for first relapse?

by TerryH on Mon Oct 03, 2016 12:02 pm

Lyn,

In case you missed it, Victor also has been posting about his first relapse experience in this thread:

https://myelomabeacon.org/forum/victor-first-relapse-experience-t7433.html

Maybe it will be of some help to you and your husband.

Take care.