[windblown101]

Diagnosed with smoldering myeloma

by windblown101 on Wed Oct 16, 2013 12:46 pm

Hi,

Just by a fluke I was told that I might have myeloma. After skeletal survey, that didn't show any lesions, bone marrow and bone biopsy which showed that 65% of the cells tested positive, I was told that I had smoldering myeloma and that at this point they were going to do the watchful waiting. I was put on a once a month regimen of pamidronate [Aredia] and at the same time they test my blood once a month. At the moment my levels are WBC: 5.1, HGB: 110, Plat: 202, ANC: 2.5, Cr: 80

In the last bone scan they did find one lesion on my tibia, which is according to my specialist no concern right now. Besides that it feels like I catch every cold that is going around.

I just find it a weird idea that I have cancer and nobody further treats it. Wouldn't it make more sense to treat it now and nip it in the butt? I would love to hear some of your opinions, experiences and suggestions. I am very active in researching this and just would like to know what is out there and what activities I can do. I am only 56 and just have too much still that I want to do!

[terryl1]

Re: Diagnosed with smoldering myeloma

by terryl1 on Wed Oct 16, 2013 1:27 pm

Hi, I would get a second opinion from a myeloma expert. Based on the CRAB criteria, you may have active myeloma based on your anemia (especially if you are male) and lytic lesion. If the lytic lesion was found in a radiographic skeletal survey, it notoriously undercounts lesions. That happened to me. A PET CT is much more accurate and may present a more accurate picture of your situation. You also have a high plasma cell infiltration percentage. like I did. Those with more than 60% PC infiltration have a much quicker time to progression to active myeloma than others. You don't mention your light chain numbers...were they elevated? The NIH has a smoldering myeloma study and a clinical trial with carfilzomib for SMM. You may want to call them. The head of the myeloma dept. there is Dr. Landgren. Great guy. Good luck.