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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@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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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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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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@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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@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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@1oldsoul

@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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Happy New Year to you too. Hope you are doing well.

I had a PET scan a few years ago that was pretty clean. My Hematologist/Oncologist suggested another PET. We talked skeletal scan too, but I convinced to go with MRIs on Pelvis and lower spine with and without contrast. It's been 8 days since the scans and I only have the results of Pelvis with contrast so far.
Here is a Summary of MRI Findings....

Avascular Necrosis (AVN) of Both Femoral Heads:

Key Finding: There is evidence of AVN in both hips, which means compromised blood supply to the femoral heads leading to bone damage.
Good News: There is no collapse of the articular surface, indicating early-stage AVN.

Intertrochanteric Lesion in Left Femur:

Key Finding: An 8 mm rounded lesion is seen in the proximal left femur.
Interpretation: The lesion is T1/T2 hyperintense, possibly containing internal fat, which suggests it is likely benign. However, it is too small to characterize definitively.

Labrum of Left Hip:

Key Finding: Linear signal at the base of the anterosuperior labrum could indicate degenerative fraying or tearing, likely age-related.
Clinical Relevance: May contribute to hip pain or restricted movement.
Degenerative Changes in the Spine and Pelvis:

Pubic Symphysis and Sacroiliac Joints:

Mild degenerative changes noted, but no active sacroiliitis (inflammation).
Lower Lumbar Spine:
Advanced degenerative disc disease with levoscoliosis (leftward curvature of the spine).

Hamstring Tendons:

Key Finding: Mild tendinopathy of the hamstring origins.
Clinical Relevance: Likely not causing significant symptoms but could contribute to discomfort.

Left Inguinal Hernia:

Key Finding: Small fat-containing inguinal hernia on the left side.
Clinical Relevance: Unlikely to be symptomatic unless causing pain or other issues.

I wasn't expecting any of this. I have childhood friends that abused there bodies and are now paying the price. I've always been careful not to overdo it.
I'll wait for the other MRI results before I talk with my doctors, but right now I think the lesion may be MGUS related, but don't know. The biggest issue may be AVN. After a lot of research, my guess is both the AVN and possibly indirectly the MGUS, were caused by getting injected with steroids averaging 127mg/day for 43 days, 3 years ago. This was done to fight life threatening pneumonia.

Yes. Please stay in touch and let me know how your scan and BMB go. I'll let you know if anything new happens with me. I passed on the BMB earlier, but will reconsider once I get more test results. Good Luck. Hope your results are better than mine.

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@dcuste

Happy New Year to you too. Hope you are doing well.

I had a PET scan a few years ago that was pretty clean. My Hematologist/Oncologist suggested another PET. We talked skeletal scan too, but I convinced to go with MRIs on Pelvis and lower spine with and without contrast. It's been 8 days since the scans and I only have the results of Pelvis with contrast so far.
Here is a Summary of MRI Findings....

Avascular Necrosis (AVN) of Both Femoral Heads:

Key Finding: There is evidence of AVN in both hips, which means compromised blood supply to the femoral heads leading to bone damage.
Good News: There is no collapse of the articular surface, indicating early-stage AVN.

Intertrochanteric Lesion in Left Femur:

Key Finding: An 8 mm rounded lesion is seen in the proximal left femur.
Interpretation: The lesion is T1/T2 hyperintense, possibly containing internal fat, which suggests it is likely benign. However, it is too small to characterize definitively.

Labrum of Left Hip:

Key Finding: Linear signal at the base of the anterosuperior labrum could indicate degenerative fraying or tearing, likely age-related.
Clinical Relevance: May contribute to hip pain or restricted movement.
Degenerative Changes in the Spine and Pelvis:

Pubic Symphysis and Sacroiliac Joints:

Mild degenerative changes noted, but no active sacroiliitis (inflammation).
Lower Lumbar Spine:
Advanced degenerative disc disease with levoscoliosis (leftward curvature of the spine).

Hamstring Tendons:

Key Finding: Mild tendinopathy of the hamstring origins.
Clinical Relevance: Likely not causing significant symptoms but could contribute to discomfort.

Left Inguinal Hernia:

Key Finding: Small fat-containing inguinal hernia on the left side.
Clinical Relevance: Unlikely to be symptomatic unless causing pain or other issues.

I wasn't expecting any of this. I have childhood friends that abused there bodies and are now paying the price. I've always been careful not to overdo it.
I'll wait for the other MRI results before I talk with my doctors, but right now I think the lesion may be MGUS related, but don't know. The biggest issue may be AVN. After a lot of research, my guess is both the AVN and possibly indirectly the MGUS, were caused by getting injected with steroids averaging 127mg/day for 43 days, 3 years ago. This was done to fight life threatening pneumonia.

Yes. Please stay in touch and let me know how your scan and BMB go. I'll let you know if anything new happens with me. I passed on the BMB earlier, but will reconsider once I get more test results. Good Luck. Hope your results are better than mine.

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@dcuste
Please let me know after you discuss all this with your physician and get the final diagnosis. MGUS, SMM etc. The bone lesions are concerning as my hematologist mentioned that is why he requests periodic CT scans. Please feel free to PM (private message) me if you don’t feel comfortable sharing information on the forum. I won’t get the results of the low dose skeleton scan and BMB until I see the doc on Feb 4th. I have always done a lot of heavy lifting so as you mentioned, I may be paying the piper now. I also have degenerative disc disease and had an Inguinal hernia repaired in 2017 and femoral hernia repaired in 2014. I find that the Qunol turmeric I am taking keeps the inflammation and pain at bay better than any drug and may also be good for the MGUS according to the clinical trials. We’ll see. I will keep you in my prayers!

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@1oldsoul

@dcuste
Please let me know after you discuss all this with your physician and get the final diagnosis. MGUS, SMM etc. The bone lesions are concerning as my hematologist mentioned that is why he requests periodic CT scans. Please feel free to PM (private message) me if you don’t feel comfortable sharing information on the forum. I won’t get the results of the low dose skeleton scan and BMB until I see the doc on Feb 4th. I have always done a lot of heavy lifting so as you mentioned, I may be paying the piper now. I also have degenerative disc disease and had an Inguinal hernia repaired in 2017 and femoral hernia repaired in 2014. I find that the Qunol turmeric I am taking keeps the inflammation and pain at bay better than any drug and may also be good for the MGUS according to the clinical trials. We’ll see. I will keep you in my prayers!

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My lumbar MRIs just showed normal wear and tear. My Hematologist/Oncologist isn't concerned about it nor the pelvic MRI. The noted lesion is not MGUS related and the AVN is not a result of the steroids. She didn't recommend any followups. I order copies of the MRIs and will try to get a second opinion. I'll let you know how that works out.

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@dcuste

My lumbar MRIs just showed normal wear and tear. My Hematologist/Oncologist isn't concerned about it nor the pelvic MRI. The noted lesion is not MGUS related and the AVN is not a result of the steroids. She didn't recommend any followups. I order copies of the MRIs and will try to get a second opinion. I'll let you know how that works out.

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Please do let us know.

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@dcuste

My lumbar MRIs just showed normal wear and tear. My Hematologist/Oncologist isn't concerned about it nor the pelvic MRI. The noted lesion is not MGUS related and the AVN is not a result of the steroids. She didn't recommend any followups. I order copies of the MRIs and will try to get a second opinion. I'll let you know how that works out.

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Thank you for the update and that appears to be good news so far that the Hematologist is unconcerned. We’re all collectively pulling for you and believing in the best outcomes.
I’ll have some news on my tests in 3 weeks.

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