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Hello to all. I find these comments so familiar to questions I’ve had over the years since I was diagnosed with MGUS.
It seems tho there’s never any exact answers from anyone. My oncologist says we will just watch you. I would love to be able to do something before my kidneys are destroyed from the protein in them.
Does anyone have any information on anything that might help the protein problem?????
Replies to "Hello to all. I find these comments so familiar to questions I’ve had over the years..."
@lgb55
I too have been diagnosed with MGUS, but am not worried as the chance of it progressing to MM is quite small. I am being monitored yearly to look for any changes in blood, but am not worried. MGUS is very common I have read. Depending on your M protein level, your kidneys may not be affected?
@lgb55 welcome to Mayo Clinic’s Connect. We are all so different, members who have been diagnosed with MGUS, but I believe that the common denominator is that we are all impatient with “watch and wait.” There are things we can do that maximize our overall health such as diet, exercise and diligent monitoring. There have been studies of the effectiveness of various health interventions, some demonstrate overall health benefits. But while these should encourage us, they don’t extinguish the paraprotein.
Add to that that we are all different with different lifestyles and co-existing conditions that influence our vulnerability to progression. My “numbers” escalated substantially after major surgery last year. They have stabilized since as my body recovers its equilibrium. I feel and look better lab-wise.
I wish that I had more of what you seek. We try not to compare numbers for all the aforementioned reasons but there are many posts about what members have read or tried to improve outcomes. The take away is that the odds are that we will not progress to Multiple Myeloma from MGUS BUT if we do, the progress over the last decade in treatment no longer makes it a death sentence. Additionally, monitoring for progression will ensure that you get excellent medical care. A good thing.
Do check out more of our MGUS threads. So glad to have you with us but sorry you joined our club.
Patty
@lgb55 oh and I forgot to say…kidney involvement is called MGRS (renal significance) and is VERY rare. According to the Cleveland clinic…
“ How common is MGRS?
MGRS is very rare. It’s estimated that less than 1% of people have it. It’s more common in people over age 60.”
I have been doing the mostly plant based diet which has kept my IgG kappa stable I think. It also keeps me away from lots of unhealthy food choices. Sloan Kettering has a clinical trial of this for MGUS. Veggies and fruits are delicious too!
@lgb55
If you have MGUS, I would think your kidneys are probably ok, as with MGUS the M protein is very small. Maybe I am incorrect. You need to trust the oncologist I think or find another one. This one is telling you, you are ok, I think. How often is he checking your blood levels? Sometimes its 6 months and sometimes yearly. Also if you have has MGUS for years, that might be good? The %age of cases that progress to MM is small actually.
Connect
@lgb55 Hello,
Maybe you find some of your questions answered in this link:
What Are Monoclonal Gammopathy of Undetermined Significance, Smoldering Multiple Myeloma, and Active Myeloma?
https://www.myeloma.org/what-are-mgus-smm-mm