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Is there anything to help stop or slow progression of MGUS?
Blood Cancers & Disorders | Last Active: Jan 28 8:24pm | Replies (135)Comment receiving replies
Reply to @1oldsoul
Thanks for the update. I'll be praying for you.
My Hematologist/Oncologist has a much different more laid back process than yours. My IGM was 774 a year ago. Now it is 1608 and she still has me on the wait and see program. I asked about using Curcumin, but she advised against it since I'm using Pradaxa. I told her that Cardiology only put me on it because of a brief period of A-fib that hasn't been an issue for over 2 years now. She also nixed the bone biopsy at this time, put did agree to a Pet Scan.
My light chains are normal but IGG is low at 640. She didn't have an opinion on my prognosis or even if I was headed toward WM or MM. She claims to be very up to date on MGUS and the only way to deviate from the health plan standard of care, was to find a trial on my own. The standard it to wait until there are symptoms or IGM get to 3000.
BTW, my thinking is that this all started 2 1/2 years ago when I was hospitalized for pneumonia and treated with erythromycin, prednisone and insulin.
Replies to "Reply to @1oldsoul Thanks for the update. I'll be praying for you. My Hematologist/Oncologist has a..."
I wonder why the different medical opinions as to when the IGM is high enough for concern and when to do the bone biopsy and scans? Has anyone else on the forum discussed this with their physician and what was the consensus? I would really rather not have 2 full body scans (radiation) and the bone biopsy at this point especially right before the holidays when we plan to go out of state so I may discuss holding off until the first of the year. What state is your doctor in? Have you been to Mayo or any other specialty clinics? I live in rural Arkansas and choices of hematologists are limited.
@dcuste Good afternoon and Happy New Year. Hope you are doing well. I saved your post since we have IGM MGUS and have similar lab values. How did your PET scan turn out? I am going next week for low dose full body skeletal scan and on 1-23 I will have the bone marrow biopsy done. My hematologist agreed to wait on the full body organ CT scan with contrast until receiving the results of the tests this month. Were you concerned that your IGM jumped from 774 to 1608 in one year? Mine is going up about 100 points a year (now 697) and my IGG is similarly low like yours at 653 but has stayed in the 500+ to 600+ range for 3 years. My IGA is also very low at 48. (Range is 70-400) Hope to keep in touch with you as it seems most on the forum do not have IGM MGUS. Wishing you the best.
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Thank you so much for your reply. I am also of the opinion to watch and wait for awhile longer but my Hematologist is very conservative. I recently asked him at what level he would consider the IGM to be very concerning and he stated 1500. I worry about all the radiation in the scans but my Hematologist is the only one in my area so I don’t want to refuse his treatment plan. Thank you for praying for me. I will do the same for you. Please keep me updated and I will do the same. Since I have been very sensitive to side effects of medications since my teens I have always had to look for natural remedies and will continue to do so to beat this, God willing.