1. < Blood Cancers & Disorders

People diagnosed with MGUS under 45

Posted by DMD81 @dmdinapoli81, 18 hours ago

I was diagnosed with MGUS and iron deficient anemia at 36. I am not diabetic or prediabetic and have no autoimmune or other serious underlining health conditions. I want to know anyone else who was diagnosed with MGUS under the age of 45. All the research that is out there the mean age is mid 60s or higher. Many people who are diagnosed are in their 60s - 70s. Which 1% a year doesn’t mean much at 70(research) but at 36, that’s a different story. Someone who has a background in psychology, understands how researchers like to skew the numbers to aid their hypothesis. That’s what we learned first day of class. Why don’t they do more research solely on a population under the age of 45 and the ones that are for the younger population are so strict on their requirements that it eliminates the genpop.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

kayabbott | @kayabbott | 1 hour ago

As a research scientist, we don't skew our numbers to aid hypotheses. If your teacher presented otherwise, he/she was wrong. There is a lot of online misinformation posted as research. Peer-reviewed papers have rigorous levels of review and I have rejected weakly supported documents. Research is based more on what data is available, and most people with MGUS are older, so a richer data set. Not to say that research subjects are missed or under-studied, such as men's cardiovascular risk being studied more than women's. If you are interested in research, then NIH and ResearchGate are two sources. Mostly, it is important to pin down your oncologist and get a full understanding of MGUS. Consider getting a bone marrow biopsy to see if/what mutations you might have and if there are genetic reasons for your early diagnosis. Searching using "early onset MGUS" or other criteria may find more papers. https://pmc.ncbi.nlm.nih.gov/articles/PMC7873268/#:~:text=Monoclonal%20gammopathy%20of%20undetermined%20significance%20(MGUS)%20is%20rare%20in%20young,a%20lower%20risk%20of%20progression. https://pmc.ncbi.nlm.nih.gov/articles/PMC9720897/

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | 1 hour ago

Hi @dmdinapoli81. Doing a quick search this morning I was able to find a couple of discussions and comments by some younger members with MGUS.

This conversation was started a few year ago by @tnraemae:
~MGUS at young age
https://connect.mayoclinic.org/discussion/mgus-at-young-age/
She was 36 at the time of her MGUS diagnosis. I’m not sure she’s active in the forum right now but she may get the notice by me tagging her name. There are other members in the conversation, such as @oliviahutson, who is currently active.
~~
Another member, @nboulet was diagnosed around the age of 45 and has had MGUS for 20 years as mentioned in this post: https://connect.mayoclinic.org/comment/1198099/

And this discussion by @nick86 who was 37 at the time:
~Does anyone have any info on MGUS treatment or risk of progression?
https://connect.mayoclinic.org/discussion/does-anyone-have-any-info-on-mgus-treatment-or-risk-of-progression/
Hopefully this gets the conversations started for you with members in your demographic. Are you currently on medications or treatments to help with your anemia?

REPLY
amberl99 | @amberl99 | 14 minutes ago

I believe I’ve had MGUS since my 40’s. I was followed by a hematologist for two years then with abnormal WBCs and rbcs, the same reason I went to a hematologist this time. Either the MGUS specific tests didn’t exist then or he didn’t do them. So it’s 1-2% per year, depending on how many characteristics one has, but who knows how long we’ve had it? The only reason we think usually those is 60s-70’s have it is because we don’t test it in younger people much whereas we do with the older population. That being said, I read a summary of a study they did in which they tested the entire country. I’ll try to find it again. Iceland, maybe? A country with a small population where it was feasible to test everyone. If I don’t report back, you might want to google it. I don’t think a more expansive testing population exists. At any rate, since none of us know when MGUS began, only when diagnosed, it is important to have the regular blood lab regiment to follow risk of progression. I was only diagnosed in March this year, but I’ve done a lot of reading. Each individual is so different and docs know so little about MGUS. I am learning some are treating smoldering earlier, instead of waiting. I think that a good strategy. My bmb is next week. The myeloma specialist who sees MGUS patients also put my numbers in the risk category. Despite the hematologist saying I was low risk, the myeloma specialist says 55% risk of smoldering. Choose doctors well.

REPLY
1 reply
amberl99 | @amberl99 | 3 minutes ago
In reply to @amberl99 "I believe I’ve had MGUS since my 40’s. I was followed by a hematologist for two..." + (show)
@amberl99

I believe I’ve had MGUS since my 40’s. I was followed by a hematologist for two years then with abnormal WBCs and rbcs, the same reason I went to a hematologist this time. Either the MGUS specific tests didn’t exist then or he didn’t do them. So it’s 1-2% per year, depending on how many characteristics one has, but who knows how long we’ve had it? The only reason we think usually those is 60s-70’s have it is because we don’t test it in younger people much whereas we do with the older population. That being said, I read a summary of a study they did in which they tested the entire country. I’ll try to find it again. Iceland, maybe? A country with a small population where it was feasible to test everyone. If I don’t report back, you might want to google it. I don’t think a more expansive testing population exists. At any rate, since none of us know when MGUS began, only when diagnosed, it is important to have the regular blood lab regiment to follow risk of progression. I was only diagnosed in March this year, but I’ve done a lot of reading. Each individual is so different and docs know so little about MGUS. I am learning some are treating smoldering earlier, instead of waiting. I think that a good strategy. My bmb is next week. The myeloma specialist who sees MGUS patients also put my numbers in the risk category. Despite the hematologist saying I was low risk, the myeloma specialist says 55% risk of smoldering. Choose doctors well.

Jump to this post

I found the study, it was Iceland but they didn’t test the entire population, only those 40 or older. The sample was 75,000 people so pretty substantial. What I gleaned from it is to stay healthy! Ha! Here it is: https://pmc.ncbi.nlm.nih.gov/articles/PMC10690899/

REPLY
Please sign in or register to post a reply.