[mdszj]

Smoldering myeloma & CML

by mdszj on Mon Jan 05, 2015 7:36 pm

Hello all,

I just got my diagnosis of smoldering myeloma today by my hematologist.

A bit of history: I also have chronic myeloid leukemia (CML) and immune thrombocytopenia (ITP). A splenectomy for the ITP a few years ago brought up my platelets to around low normal range, so that is not really an issue. My CML is non-detectable by both PCR and bone marrow biopsy, so my medicine (Sprycel) I take every day for it is working great.

This leaves the smoldering myeloma. My recent bone marrow biopsy showed ~10% plasma cells, and FISH test for multiple myeloma/MGUS was negative for any gene abnormalities. M protein is IgA kappa, and is ~ 16 g/L [1.6 g/dL] in serum. Urine protein for 24 hr was 390 mg. Kappa/lambda ratio is 48.9.

My hemo indicated that he is concerned about possible effects of the chemotherapy on the CML stem cells that are still present in my marrow, and because of this he is thinking I should have a mini-allo transplant.

Mike

[AutumnSC]

Re: Smoldering Myeloma & CML

by AutumnSC on Mon Jan 05, 2015 8:14 pm

Mike,

Prayers for you. You are not alone in this fight.

[mdszj]

Re: Smoldering myeloma & CML

by mdszj on Fri Jan 09, 2015 8:27 pm

I just had an appointment with my CML specialist on Wednesday at the University of Penn­syl­vania, and we discussed the new multiple myeloma diagnosis, test results, etc. Both he and my local hemo indicated that, for now, just do another round of testing in 3 months to see what the rate of change in m-proteins, K/L ratio, etc is, if any, before any action is taken. Also, I got my skeletal x-ray survey results back, and they were all negative, so I guess that is good.

He mentioned that he does not believe treatment, if needed, would impact the medicine I take for CML, and that if I need treatment it would probably be chemo and/or auto transplant. He also said a donor transplant is pretty far down on the list of treatments, which is what the local guy talked about doing.

I have a few questions and would like to hear any thoughts on these if possible:

1. The fact that my local hemo and the specialist at Penn disagreed on potential treatment is of some concern to me. Maybe I need a tie breaker opinion. I am thinking about getting a consult with a true multiple myeloma specialist at a place where they see a lot of multiple myeloma patients. Do folks on this forum think this is a good idea, and also does anybody have any suggestions for excellent facilities / doctors in my general area (Eastern PA)? I am willing to travel some ways if needed.
    
2. The guy at Penn didn't seem to think the multiple myeloma is as much of a death sentence as I have been thinking from reading and from seeing videos of multiple myeloma doctors talking about it, and said that nowadays there are a lot of very good drugs and multiple myeloma is more of a chronic disease. That was good to hear, but I hope that is the case. Any thoughts on this issue?
    
3. I have had an odd feeling on the right side of my jaw for a couple months. Not quite pain; I think I banged it working out, but who knows. The x-ray was negative, but is it possible there is a lesion, etc, there that the x-ray did not pick up?

thx for any thoughts, Mike

[Cheryl G]

Re: Smoldering myeloma & CML

by Cheryl G on Sat Jan 10, 2015 12:56 am

Hi mdszj,

UPenn has a large group of well-known and well-respected myeloma specialists. If you're looking for a group of doctors in your area that regularly sees a lot of myeloma patients, then you really don't have to look much further than Penn.

If you want to go outside of Penn, however, you can go down to Johns Hopkins, or up to the New York City area. Sloan-Kettering in New York has a sizable and growing myeloma group.

One thing to understand is that smoldering multiple myeloma is distinctly different from active (symptomatic) multiple myeloma. It's an earlier stage of symptomatic multiple myeloma which MAY evolve into symptomatic disease, but it is far from guaranteed to do so. The only form of multiple myeloma that is typically treated with different drugs and a stem cell transplant is symptomatic multiple myeloma.

Your situation is more complicated, obviously, given that you also have CML, and figuring out what is the right thing to do given that you have the two diseases is more complicated that figuring out what to do with the one or the other. That's why it's good that you are consulting with specialists.

Good luck!

[mdszj]

Re: Smoldering myeloma & CML

by mdszj on Sat Jan 10, 2015 7:13 pm

Cheryl,

Thanks for getting back to me on my post. Trying to learn about multiple myeloma is pretty confus­ing and compli­cated. It is good to hear about Penn, since that is where I have been going up to now (in addition to my local guy). Earlier this week, I saw a hematologist-oncologist at Penn, and his nurse practitioner assistant told me that usually now they refer multiple myeloma patients to a few doctors at Penn who do most / all of the myeloma cases.

Thanks,
Mike