[ambhall]

Hematologist-oncologist - what to expect on first visit?

by ambhall on Tue Oct 01, 2013 8:26 pm

Good evening all. My journey here is a long one and I won't bore you with all the details other than to say that just as my neurologist was beginning to run out of theories, my SPEP showed an M-spike of 1.2. A friend who is in medical school says that it's likely MGUS at that level, but might be more serious given that I have been symptomatic (fatigue, numbness, tingling, and pain) for months. I have been referred to Oncology/Hematology and my first appointment is tomorrow. What should I expect?
Thanks in advance!

[Dianem]

Re: Hematologist-oncologist - what to expect on first visit?

by Dianem on Wed Oct 02, 2013 12:19 am

Hi Ambhall - my guess is the oncologist-hemotologist will most likely go over the SPEP with you, do a physical exam, and probably recommend additional tests. Two years ago, I had my first m spike (1.5) and my doctor decided on another blood test, 24-hour urine tests, total body scans, and a bone marrow aspiration. My diagnosis ended up being IG MGUS and every 6-8 months I do blood testing. So far, the range has stayed close (now .9). I communicate with others who have MGUS and they have had these baseline tests too. It will take time to schedule and gets results from the various testing.
From other posts, some with MGUS do experience tingling issues and I believe it is associated with the type of MGUS. What is your RBC count? So hard not to be concerned when you have an m spike. Good luck tomorrow - Diane

[ambhall]

Re: Hematologist-oncologist - what to expect on first visit?

by ambhall on Wed Oct 02, 2013 10:07 pm

Thanks, Dianem. I had the appointment today and it was exactly as you predicted. Quite a few labs were ordered (more blood, 24 hour urine, etc.). Some are repeats. I have always been slightly anemic, but I don't know my current RBC counts. I realize that I am going to have to start keeping a notebook with this sort of information. Any other tips for a newbie? Thanks again!

[Dianem]

Re: Hematologist-oncologist - what to expect on first visit?

by Dianem on Thu Oct 03, 2013 1:41 pm

Hi Ambhall - since being diagnosed with MGUS, I try to focus that MGUS is common with autoimmune disorders (I have a hypothyroidism) and the progression to active multiple myeloma is about 1% per year of the MGUS pool. This is why it is important to be assessed every 6-8 months. If you have the bone marrow aspiration, it will provide risk progression based on the type of MGUS and chromosome type. My oncologist told me to stay active and my diet is OK (vegetarian for decades). I do take one Curcumin and green tea extract capsule/day. The waiting is hard too. Hang in there - Diane