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Is there anything to help stop or slow progression of MGUS?

Posted by amyboylan1 @amyboylan1, Oct 12, 2024

I am wondering if there is anything anyone is doing to stop or slow the progression of MGUS. I m recently diagnosed and have a lot to learn. My oncologist said there is nothing that can be done. Also could some of you share how long you have had MGUS. I am like I’m sure like all of you very concerned about my MGUS processing. Thank you.

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harty | @harty | 2 days ago
In reply to @richardab "Most MGUS' do not progress any further. Some, of course, do to Smoldering (Asymetric) Myeloma (SM)..." + (show)
@richardab

Most MGUS' do not progress any further. Some, of course, do to Smoldering (Asymetric) Myeloma (SM) and an even smaller percent to Multiple Myeloma (MM). Doctors in general rarely recommend treatments for MGUS and SM as the treatment effects and aftereffects would be worse than symptoms people are experiencing. Please be aware that much money and research has and continues to go into studying and developing treatments for MM and the life expectancy continues to increase. Get a good hematologist/oncologist, one who is well versed in the disease and willing to communicate and work with you.

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You might want to research treatment of MUGUS with curcumin.

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harty | @harty | 2 days ago

They mean your MUGUS is progressing. Your hematologist needs to consider treatments to slow the progression. If your hematologist is not willing to consider this , you should go to a cancer center.

they mean your MUGUs

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eboyle71 | @eboyle71 | 2 days ago

I was diagnosed in 2013 at 42 years old. I am now 53. I was told the same thing, there is not treatment at this time. I’ve been seen by a Doctor who comes over from Dana Farber to the VA , I am a Veteran, twice a year for blood work to check my status. It fluctuates but hasn’t progressed other than Smoldering Myeloma.
I can’t give you much more information right now. I am deployed overseas with the Army.
I can offer support and friendship.
Eileen

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kayabbott | @kayabbott | 2 days ago
In reply to @harty "I agree with what you said. I am interested in any reported differences in care of..." + (show)
@harty

I agree with what you said.
I am interested in any reported differences in care of MUGUS between MD Anderson & Mayo's that you have found. Such as access to clinical trials. Or how well the institutions communicate with your local hematologist.

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Those questions are beyond my experience level. Hopefully one's oncologist communicates with other organizations, knows about clinical trials, and keeps up on research, but it commonly falls on us to advocate for ourselves and to do the background research. There doesn't seem to be a lot of new research on MGUS, perhaps because it is considered by medical personnel to be asymptomatic unless it morphs into SMM or MM.

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1oldsoul | @1oldsoul | 1 day ago
In reply to @dcuste "Reply to @1oldsoul Thanks for the update. I'll be praying for you. My Hematologist/Oncologist has a..." + (show)
@dcuste

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.

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@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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