Welcome to this week's edition of The Myeloma Beacon’s “Weekly Poll”. This week’s question is about how long it's been since your diagnosis with monoclonal gammopathy of undetermined significance (MGUS).
A few clarifications:
First, as indicated in the question, you should only respond if you have MGUS, not active or smoldering multiple myeloma.
Second, if you are a caregiver or spouse of of someone with MGUS, feel free to answer on their behalf.
Once you have answered the question above, add whatever comments you feel might be relevant in the discussion below.
We previously ran similar polls for people with active and smoldering myeloma, check out those results:
Active multiple myeloma:
https://myelomabeacon.org/forum/weekly-poll-how-long-has-it-been-since-your-diagnosis-t621.html
Smoldering multiple myeloma:
https://myelomabeacon.org/forum/weekly-poll-how-long-since-your-smoldering-diagnosis-t662.html
Forums
Re: Weekly Poll - How Long Since Your MGUS Diagnosis?
Hi - Since diagnosed with MGUS in Oct of 2011 I've read various MGUS webpages/forums. I am confused - it appears some with MGUS called Ig A MGUS claim they have more 'nerve' issues than others with Ig G and Ig M MGUS . One article stated that Ig G MGUS tends to have a higher M spike than others. Since a higher M spike is risk for developing multiple myeloma, does that mean Ig G MGUS patients are in a higher risk group? Since Oct of 2011, my spike has stayed the same (1.5). Are there differences between the diff MGUS Igs? I did have a BMA and it showed Ig G MGUS with trisomic 7. Diane
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dianem
Re: Weekly Poll - How Long Since Your MGUS Diagnosis?
When I first found out that I had MGUS in July 2011, I was a bit nervous. Needless to say, time has calmed my nervers a lot. I've also learned more about MGUS, and the possibility of progressing to active myeloma. Based on the risk stratification charts developed by the Mayo Clinic and Dr Kyle, my risk of progression is in the high intermediate category because I have more than 1.5 gm/dL of M protein, and a FLC ratio above 1.65 mg/L. My type of MGUS is IgG so that, thankfully, will keep me from going into the high risk catagory. Since I can not control what is going on in my body, I have decided to just live life to the fullest as best I can. I continue to do my research and continue to learn about MGUS, SMM, and Myeloma, but I try not to worry about it. My prayer is for a cure soon. I just finished up my July labs, and I'm myeloma free right now.
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Live4Health - Name: Brenda
- Who do you know with myeloma?: MGUS only, self
- When were you/they diagnosed?: 8/30/2011
- Age at diagnosis: 58
Re: Weekly Poll - How Long Since Your MGUS Diagnosis?
Hi Brenda - thanks for the MGUS info. Just had my first 6 month blood test following the BMA and my m spike stayed in the same range (1.5). Did you have a BMA? If so, are aware of what type of chromosome is assoc with your MGUS? Yes, I try not to think about it, but hard not to. Do you take anything (cucurmin or gr tea extract, etc.)? Take care, Diane
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dianem
Re: Weekly Poll - How Long Since Your MGUS Diagnosis?
Regarding different antibodies
IgG hangs around in the blood a lot longer than IgA. So this why a high M-spike for IgG, compared to IgA, can still be lower risk.
IgG hangs around in the blood a lot longer than IgA. So this why a high M-spike for IgG, compared to IgA, can still be lower risk.
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Anonymousness
Re: Weekly Poll - How Long Since Your MGUS Diagnosis?
Hi dianem,
LOL, I was really just giving my personal MGUS experience. It wasn't my intention to answer your questions. I don't feel that I have enough knowledge for that yet, because I'm still pretty new with this. I am glad that my comments were helpful for you though. I am happy to share.
No, I did not have a BMB. My skeletal survey did not show any lytic lessions, and my m-protein was less than 3.0 so I opted not to have a BMB. If my m-protein climbs to 3.0 or above (currently at 1.9) or I get any of the CRAB-I symptoms, then I will have a BMB at that time. Green tea extract has been a regular part of my diet for years, but I am not on a cucurmin regimen. It is too costly for me, and from what I've read has mixed results.
Hey Anon,
Thanks for your imput. That makes sense. I knew the normal ranges for each of the immunoglobulins, but wasn't certain why the IgG range was higher.
LOL, I was really just giving my personal MGUS experience. It wasn't my intention to answer your questions. I don't feel that I have enough knowledge for that yet, because I'm still pretty new with this. I am glad that my comments were helpful for you though. I am happy to share.
No, I did not have a BMB. My skeletal survey did not show any lytic lessions, and my m-protein was less than 3.0 so I opted not to have a BMB. If my m-protein climbs to 3.0 or above (currently at 1.9) or I get any of the CRAB-I symptoms, then I will have a BMB at that time. Green tea extract has been a regular part of my diet for years, but I am not on a cucurmin regimen. It is too costly for me, and from what I've read has mixed results.
Hey Anon,
Thanks for your imput. That makes sense. I knew the normal ranges for each of the immunoglobulins, but wasn't certain why the IgG range was higher.
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Live4Health - Name: Brenda
- Who do you know with myeloma?: MGUS only, self
- When were you/they diagnosed?: 8/30/2011
- Age at diagnosis: 58
Re: Weekly Poll - How Long Since Your MGUS Diagnosis?
Thanks Brenda and Anonymousness for the info. I have been drinking green tea, but will research the extract. I guess I sort of freaked out when my m spike went from 1 to 1.5 within a month and my oncol-hemo dr ordered a BMA. I even contacted the American Cancer Treatment Centers of America here in AZ thinking I would go there for treatment. I've always been healthy, but for about 20 years have had low thyroid and take synthyroid. Thru research I'm learning that many MGUS patients also have an autoimmune issue (diabetes, lupus, RA, MS, thyroid, etc.) too. Diane
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dianem
Re: Weekly Poll - How Long Since Your MGUS Diagnosis?
I'm not sure I understand the point of this poll! I looked at it and took fright that so few seemed to have survived mgus for more than a few years. Then I looked again and saw that there are in fact very few respondents. Phew. I appreciate the poll is done in the spirit of community. I just think it could do with some explanation, though.
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Paul
Re: Weekly Poll - How Long Since Your MGUS Diagnosis?
Hi Paul - I hear what you are saying. I was diagnosed with Ig MGUS last winter and like most get tested every six months. I had never heard of MGUS or multiple myeloma. After a BMA, my doctor said to focus that 1 percent of the MGUS population progress to multiple myeloma each year. She also said that many who get diagnosed with multiple myeloma didn't always know they had MGUS first. Said to view MGUS as a precancerous polyp not removed and don't know if it will progress or stay benign. My endocrinologist said MGUS is more common with autoimmune diseases and does not produce symptoms. In fact, I would not have known I had it if she hadn't tested me for Vitamin D status. Honestly I wish I never had that test. Diane
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Dianem
Re: Weekly Poll - How Long Since Your MGUS Diagnosis? - 2012
Diane I was just reading one of your messages on the Forum & you mentioned that the Doctor had tested your Vit. D level & that's when you found out you had MGUS. Was the level high or low? Mine came back very high & my family Doctor told me about it but just told me to not take any Vit. D supplements. After several months of trouble with the nerves in my legs they tested me for MGUS. I never knew Vit. D had anything to do with it.
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barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
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