[ana1987]

Re: Does Stage 1A multiple myeloma = smoldering myeloma?

by ana1987 on Sat May 10, 2014 2:02 pm

Thanks for the links.

I have been with anemia more than 2 years. We couldn't find the cause of it, my iron was/is okay too. I have more white cells than blood ones.

5 months ago another hematologist required me to do SPEP, which introduced me with Mr. Multiple Myeloma.

I don't know if this anemia is from MGUS or something else, but I'm going to ask my doctor. I'm still new at this stuff.

[Dr. Peter Voorhees]

Re: Does Stage 1A multiple myeloma = smoldering myeloma?

by Dr. Peter Voorhees on Sun May 11, 2014 11:49 am

Dear Ana,

Based on your description of your bone marrow results, I suspect the 1% plasma cells you are reporting was the percentage of plasma cells based on flow cytometry of the bone marrow sample. This test can underestimate the burden of plasma cells in a bone marrow. I think it is important that you clarify with your oncologist the following 2 points:

1) What is the burden of plasma cells in the marrow by aspirate differential, CD138 immuno­histo­chemistry, vs flow cytometry?

2) What is the cause of the anemia? You mention that your doctor states that iron pills will fix the problem, yet you also state that you are not iron deficient. There seems to be a disconnect here.

Sorting out the answers to the above two questions, along with the queries raised in the other postings in this thread, will help clarify the current status of your MGUS versus myeloma.

I hope this helps.

Take care!

Pete V.

[ana1987]

Re: Does Stage 1A multiple myeloma = smoldering myeloma?

by ana1987 on Fri May 30, 2014 7:54 am

Thank you very much doctor, I really appreciate your response.

Unfortunately i haven't talked with my doctor yet, but I did my check up tests and I can say that (even though i'm not a doctor) things have changed and once again i wonder if I'm MGUS or smoldering??!

RBC 3.83
HB: 10.7
HCT: 33
ESR: 39
Total proteine: 8.8
Albumin: 49%
Gamma: 28.8%
A/G ratio: 0.96%
Gamma 1%: 11.3%
Creatinine: 0.29 mg/dl
Proteines of 24 hrs urine: 200
IgG: 2 768 mg/dl
Beta2 miroglobuline: 1.492mg/l
Free light chains kappa: positive
Protein of Bence Jones: positive

So MGUS or smoldering?

[pinball]

Re: Does Stage 1A multiple myeloma = smoldering myeloma?

by pinball on Mon Jun 02, 2014 1:04 am

ana1987 wrote: "Thank you very much pinball. I really hope your plasma cell doesn't change (getting more high). Don't think much of it, take it easy I wish you all the best."

Thank you and the same well wishes to you as well. I've decided to chill out and not even research anything else until my next appointment (seems every 90 days I'll have followups for life) - in fact I shouldn't even be on this site right now, so I should log out,

Take Care

[ana1987]

Re: Does Stage 1A multiple myeloma = smoldering myeloma?

by ana1987 on Mon Jun 09, 2014 1:36 pm

Stage 1a = Smoldering myeloma

I just had my appointment with my hematologist and I got my answers.

Yes, stage 1a means that I'm smoldering multiple myeloma. He explained my "Chinese" BMB and I have 20% of plasma cells, not 1%.

About my anemia, it's something not to worry about because it has to do with that I am a young girl and with menstruations (which is lame to me) and not with multiple myeloma.

Anyway my next appointment is after 3 months.

Hope u are all good.

[Beacon Staff]

Re: Does Stage 1A multiple myeloma = smoldering myeloma?

by Beacon Staff on Tue Jun 10, 2014 12:01 am

Thanks, ana1987, for getting back to all of us and providing an update on what you found out. That's very helpful.

[ana1987]

Re: Does Stage 1A multiple myeloma = smoldering myeloma?

by ana1987 on Sun Jun 15, 2014 5:58 am

Thank you to you Beacon Staff, you don't know how much you have helped me to understand, to learn and to know good people who can understand you better than anyone else.

I'm very glad I found the Myeloma Beacon. Wish you all the best!