[Mojbahar]

Questions for myeloma specialist at first appointment?

by Mojbahar on Mon Sep 26, 2016 10:19 am

Hi everybody

I have my first appointment with a multiple myeloma specialist next Monday. This is my second visit regarding my pending MGUS diagnosis. The first appointment was with a general oncologist.

I have been reading in last 3 months about this disease and the chances of it progressing to active myeloma and still think I don't know anything about it.

I am truly appreciated if anyone can tell me what I should ask the myeloma specialist. Do I need to tell him about the supplements I am taking? Or any specific test to run? Any thoughts it's helpful since I feel my brain is not working properly anymore.

[MapleTree]

Re: Questions for myeloma specialist at first appointment?

by MapleTree on Mon Sep 26, 2016 12:49 pm

I'm 47 (near your age) and had an M protein show up and was sent off to the oncologist / hematologist.

These are the standard blood tests which I had done:

• Erythrocyte sedimentation rate (ESR)
• Serum protein electrophoresis
• Full blood count
• Serum free light chain (sFLC) assay.
• Urea and creatinine
• Calcium level
• Beta 2 microglobulin (ß2-microglobulin)
• Albumin level.

The hematologist wanted me to do a 24-hour urine collection and full body x-ray after my numbers went up a bit, but I wasn't able to do that at the time with my job and commute. My numbers stayed about the same – going up a tiny bit more after 9 months – so we did the bone marrow biopsy, which came back at 6% plasma. I don't know if I really should have done the bone marrow biopsy at this stage or not, but now I have a reference point. You and your doctor will sort out what you should do after you have your blood tests run.

Definitely tell your doctor about supplements you are taking! Very important!

I always ask my doctors what I can do to prevent myeloma and they all say "take care of your immune system, meditate, be happy." Rather vague advice, but I guess that's the best we got since nobody is sure what causes progression. I still continue to ask the question just in case some research has come out that I've missed.

Good for you that you are going to someone that specializes in myeloma. You are on the right path.

[Multibilly]

Re: Questions for myeloma specialist at first appointment?

by Multibilly on Tue Sep 27, 2016 9:33 am

M,

You might get some good ideas from this posting I made in an earlier thread.