[JeffD]

Light chain multiple myeloma diagnosis at age 54

by JeffD on Tue Oct 31, 2017 12:36 pm

Hello all,

Well I was diagnosed in February of 2017 following a back surgery to repair a crushed vertebrae following a very minor bicycle accident. The doctor put pins in my spin but was concerned as the bones were "soft". So he did a biopsy to confirm.

So my treatments thus far have been:

4 rounds of induction therapy: Revlimid, Velcade, and dexamethasone (RVD)
Zometa
20 rounds of radiation
Autologous stem cell transplant: I'm at Day+180 as of this writing
Maintenance RVD

I have light chain multiple myeloma. My kappa-lambda ratio was 937 at diagnosis, and my bone marrow involvement was 49 percent.

Currently, my marrow involvement is down to 5 percent, and my kappa-lambda ratio is 10. Strange thing is that my marrow involvement was 5 percent just prior to my transplant, and was 5 percent just after the transplant. I was hoping it would have dropped.

Also since my initial surgery, I have 5 new spine fractures that have been "mostly" repaired with kyphoplasty. Pain level is still pretty high, and I have been playing with a cocktail of medications to help with that. Just had an MRI and I have another vertebrae issue. So that's number 6. I'll be headed back to Moffitt next week to figure out what the heck is wrong now.

I have been dealing with my issues by ignoring the fact that I have it. Just my coping mechanism I suppose. But now after about 9 months, I've decided to dig in and do my research. Fortunately, my girlfriend did my research for me back when it started and got me setup with a good hema­tologist and a place for my transplant. Life goes on.

[Jonah]

Re: Light chain multiple myeloma diagnosis at age 54

by Jonah on Tue Oct 31, 2017 4:05 pm

Sorry to hear about your diagnosis, Jeff, but welcome to the forum anyway.

It looks like you've responded well to treatment so far, and perhaps you're even continuing to respond. In any case, good luck, and I hope you tolerate the maintenance therapy well.

You should check to see whether the 5 percent plasma cell percentage is the total plasma cell percentage, or clonal plasma cell percentage. As TerryH pointed out in a recent forum post, the normal plasma cell percentage, absent any clonal plasma cells, is in the low single digits, so it's conceivable in both cases that you had close to zero percent clonal plasma cells.

Good luck!