[Anita]

Re: Remission, what does it mean?

by Anita on Mon Jul 21, 2014 7:52 pm

I am very thankful I found this. My husband was diagnosed with multiple myeloma on June 14, 2013. He is currently in remisson but still taking Velcade biweekly. He is still in considerable pain and is always tired. He is still trying to work but most days doesn't make a full day. I have wondered if this was normal, since we were told the cancer is in remission.

[ryantrumpet]

Re: Remission, what does it mean?

by ryantrumpet on Wed Jun 10, 2015 1:48 am

At the point of diagnosis my M spike was extremely minimal as my multiple myeloma was basically only shown with Kappa light chains (even with 80% cancer cells in first bone marrow biopsy). In addition I was considered high risk with all p17/52, p13 deletions, etc.. Even with my kappa over 13,000 I reached normal levels prior to stem cell transplant and kept it there for two years. While my M spike is still normal and recent biopsy in April showed no signs of cancer and normal genes (no deletions) in June my Kappa has now risen slightly above normal - even with adding Dex weekly to my Velcade bi-weekly maintenance regime to take it back down.

With a slightly raised Kappa light chain and FLC ration my question is what is the level of "remission" term to be used? While I know the next several weeks will tell whether this is the beginning of a real relapse and potential "high risk" (I'm only 46 - 43 when diagnosed and feel my age will greatly help with battling any high risk potential) at this time I believe it's still considered a form of remission?

Is this true? Any advice/knowledge of what type of remission or is any high level automatically take you out of remission status? I believe this type of multiple myeloma is a bit different from most common multiple myeloma forms.

[tpt]

Re: Remission, what does it mean?

by tpt on Thu Jun 18, 2015 9:24 am

I have the same question too.

It has been 22 months post transplant, and the kappa has been steadily going up from 25 to now 37, and ratio from 2.0 to 2.2. There was a slight downward in month 4 after transplant. When diagnosed in 2011 the kappa was 700.

Is this considered as relapse?

My Dad also has the same case with Mr. Ryan here. First diagnosed as high risk with p53, but later on biopsies post transplant showed no p53.

No meds at all post transplant – not even Zometa.

Thanks for your enlightenment.