[Wayne K]

What was your treatment after first relapse?

by Wayne K on Sat Feb 08, 2014 6:11 pm

I have been in a state of remission with no M spike or other indications for 3 1/2 years following Velcade and a SCT. My last 2 lab, 90 days apart have shown faint M 1 and M 2 band and 16.5 mg/dl Lambda in early November. My latest has my M band at 52 mg/dl of Lambda light chains and a very slight rise in serum calcium.

To go with this my collar bone broke from muscle pressure 5 days ago and the X ray shows a lesion.

My question is for those who have experienced a relapse is, how does this progression compare and what was new treatment?
I have an appointment with my hematologist/oncologist in 10 days, but I'm obviously a little anxious. I did Velcade/prednisone and a stem cell transplant which put me in remission for 3 1/2 years.

Last edited by Wayne K on Sun Feb 09, 2014 4:38 pm, edited 1 time in total.

[NStewart]

Re: What was your treatment after first relapse?

by NStewart on Mon Feb 10, 2014 9:49 pm

I don't know that my results can be compared to yours, but my m-spike had risen to 3.7 mg/dl when I relapsed and had severe pain in my left tibia, small long bone in the lower leg. My oncologist restarted me on 15 mg of Rev for 21 days on/7 days off and 20 mg of Dex once a week. He said that if my m-spike didn't decrease to at least 2.5, or lower, by my next appointment in 6 weeks that he would add Velcade. By my next appointment my m-spike had decreased to 1.8. So, the Rev/Dex regimen worked really well and continues to work well 13 months later.

I also get a Zometa infusion every 6 weeks because of multiple bone lesions. The one in my leg was radiated for 6 sessions in Jan 2013. My ASCT was 1/10 and I restarted treatment in 12/12 with no maintenance therapy prior to that.

Nancy in Phila

[Wayne K]

Re: What was your treatment after first relapse?

by Wayne K on Tue Feb 11, 2014 11:39 am

Thanks Nancy.
I have only had Velcade to date, but I'm not sure I can afford Rev. I did have a good response to the Velcade the first time.

[NStewart]

Re: What was your treatment after first relapse?

by NStewart on Tue Feb 11, 2014 12:09 pm

I have a grant from the Chronic Disease Fund that pays for my Revlimid. Otherwise I wouldn't be able to afford it either. There are a number of agencies that provide grants for various aspects of treatment from prescription copays to help with costs of medical insurance to transportation costs, etc. They all do have income guidelines, but they are quite generous.