[michellenb267]

Should I start treatment for my smoldering myeloma?

by michellenb267 on Wed Nov 09, 2016 2:27 pm

Hi All:

I am new to this forum and was hoping I could get some clarity. I was diagnosed in 2004 with MGUS; I was turning 34 at the time. Two years ago it advanced to smoldering multiple myeloma, confirmed by a bone marrow biopsy.

I am still smoldering, however my doctor would now like to see me every 3 months instead of 6 months because my labs are creeping up.

I still don't understand this disease at all, but yet I am terrified daily. I of course have not had treatment, but I feel all the side effects as if I did. My fatigue is daily, my bones are painful, I have peripheral neuropathy.

I don't tell many people about this disease because I appear fine and don't get chemo. Does it look like a watch-and-wait, or should I be asking to get ahead of the advancement?

Thank you for any input.

Michelle

September 2016

Immunoglobulin G, quant, serum 2809 mg/dl
Immunoglobulin A, quant, serum 104 mg/dl
Immunoglobulin M, quant, serum 42 mg/dl

Albumin 3.6 g/dl
Alpha-1-globulin 0.2 g/dl
alpha-2-globulin 0.6 g/dl
Beta globulin 1.1 g/dl
Gamma globulin 2.2 g/dl
M-spike 1.7 g/dl
Globulin, total 4.1 g/dl
A/G ratio 0.9

[Multibilly]

Re: Should I start treatment for my smoldering myeloma?

by Multibilly on Wed Nov 09, 2016 4:30 pm

Michelle,

Welcome to the forum, but I'm sorry to hear about your symptoms.

You say you are fatigued. What are your hemoglobin and red blood cell (RBC) counts (including units of measure and normal reference ranges)?

Also, what are your serum free light chain values (kappa and lambda), creatinine, and calcium levels (including units of measure and normal reference ranges)?

Have you recently had a full body MRI or PET/CT to help confirm whether you have active bone destruction that is occurring as a result of your plasma cell disorder?

Are you being seen by a myeloma specialist (not just a hematologist-oncologist that may only see a few myeloma patients)?

[LuvHiking]

Re: Should I start treatment for my smoldering myeloma?

by LuvHiking on Thu Nov 10, 2016 11:05 am

Hi Michelle,

I concur with Multibilly's questions. Let me add that my wife's blood test results are very, very similar to yours, but she does not have bone pain. Her last bone marrow biopsy in September was normal with plasma cells at 5%. She does have peripheral neuropathy and fatigue along with chronic neutropenia. Her hem/onc is focused on an autoimmune disorder now as the cause, but she could eventually move to smoldering.

Keep comparing changes in your blood test results and ask your doctor about abnormalities outside of the ranges.