[JBarnes]

Have you been in VGPR for more than a few years?

by JBarnes on Mon Sep 15, 2014 12:24 pm

I've got IgG kappa multiple myeloma. I believe this type of multiple myeloma is pretty common. I've got a del(13) risk factor, but no other significant factors.

I went through a stem cell transplant (SCT) 1.5 years ago and got down to an M-spike of 0.2 g/dL (2 g/L), IgG of 1200, and a kappa free light chain level of 9 mg/l. All the other numbers have been good. I've been on Revlimid maintenance since my SCT (15 mg daily).

During the course of my maintenance the numbers have not really changed. My kappa numbers bounce around in the teens with my IgG staying at 1200-1400.

I've got another four months of maintenance before they give me a break, but I'm not seeing that lasting too long, given the fact that my numbers have not improved over the last two years.

Have any of you had success with holding a VGPR with no drugs on board? Jerry.

[Piper009]

Re: Have you been in VGPR for more than a few years?

by Piper009 on Mon Sep 15, 2014 12:59 pm

I was diagnosed with stage 3 multiple myeloma in July of 2009. After 5 months of doing Revlimid / dex and Zometa, I had achieved VGPR. In March 2010 I went through ASCT (autologous SCT), hoping to achieve CR, but came out of that with VGPR. I declined doing maintenance but continued with Zometa until Feb. 2013.

I have lab tests and doctor appointments every 90 days.

Even though my numbers fluctuate quite a bit, I've remained in VGPR without any treatment.

I know that everyone is different and what works for some doesn't work for all -- not yet anyway.

I don't know if it's luck, attitude, faith, fluke or all of the above. But I'll take it.

Best of luck and keep fighting the good fight!

Piper

[JBarnes]

Re: Have you been in VGPR for more than a few years?

by JBarnes on Tue Sep 16, 2014 10:02 am

Good to know. I'm real tired of the Revlimid maintenance, so I'm looking forward to taking a break from it.