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If I may ask you, how did you decide to test for this, what symptoms did you have?
How long have you had this?
What symptoms will you eventually get, as it gets worse?
Or, since you have lost the weight, does that mean that it stays in remission, or something like that?
Can it just go away like other cancers? Dormant, is what I am trying to say.
What type of treatment is needed? What is the life expectancy once it is diagnosed?
What is the name of the test needed to diagnose this, and how much does it cost?
Thanks in advance for any clarifications on this. Best of wishes to you.
I had back pain that wasn't going away and I had a high calcium blood test result. My doctor thought multiple myeloma but fortunately it was just MGUS and, the back pain went away and the calcium went back to normal.
There is no way to know how long I had it but I suspect it was within 6 months of diagnosis as all my numbers were low.
As it gets worse some people have symptoms like Peripheral neuropathy. Most people don't have any symptoms until they are "active disease".
I hope that weight loss will "stop progression" but there is no science on it yet.
Some people DO have it go away, however, if it goes away it could be something simply was messing up the blood tests. (such as auto immune) If you do have true MGUS generally it doesn't go away. But it can stop progressing.
Treatment isn't necessary until it becomes active disease... though they are coming up with some treatments just before. If it progresses to Multiple Myeloma - life expectancy is from 5 to 8 years (getting better all the time) if it progresses to Waldenstrom Macroglobulinemia life expectancy is from 10 to 15 years (also getting better all the time).
Treatment right now really does depend on what you have... but it can be anything from pills, to Car-T immunotherapy. Right now basically they try something, it works for a while, they try something else, it works for a while and so on.
This is the test https://www.ultalabtests.com/test/pr...phoresis-serum - as you can see it is very cheap. It will not give you a diagnosis but if it comes back with a "spike" you can take it to your doctor and ask for more tests. You should not have a spike.
With the death of Colin Powell from complications of COVID-19, we are informed his immune system had been compromised by multiple myeloma for which he had been undergoing treatment. He had been due to receive a booster shot for his vaccine last week, a spokeswoman said, but had to postpone it when he fell ill. He had also been treated for early stages of Parkinson’s disease, she said.
A study in Nature suggested that vulnerable MM patients might benefit from prophylactic infusions of monoclonal antibodies or Ig infusions.
A study in Nature suggested that vulnerable MM patients might benefit from prophylactic infusions of monoclonal antibodies or Ig infusions.
I wonder how many people died from covid because they did have some mild immuno compromised status from MGUS and had no idea. My MM doctor told me that I wasn't considered immune compromised until my immunoglobins became abnormal in someway and, at the moment, they are all normal.
But many people who have MGUS or SMM have drastically out of wack immunoglobins and would likely never know.
New research from The University of Texas MD Anderson Cancer Center found that treatment with antihistamines, a commonly used allergy medication, was associated with improved responses to immune checkpoint inhibitors. The preclinical study demonstrated that the histamine receptor H1 (HRH1) acts in tumor-associated macrophages (TAMs) to suppress T cell activation in the tumor microenvironment. The findings were published today in Cancer Cell.
This just made me wonder if anti histamines (or just keeping histamine levels down generally) would help to reduce progression of MGUS because it could keep T cell activation more active.
In any event as immune therapy seems to be the great hope for blood cancers this is good news.
Up until a couple of months ago I'd never heard of MGUS: Monoclonal Gammopathy of Undetermined Significance. And I certainly wouldn't have known what that term meant. I do now, though.
MGUS is a condition in which an abnormal protein is in your blood. This abnormal protein is formed within your bone marrow. MGUS itself is harmless but sometimes it can progress to serious disease, such as:
Multiple myeloma
Light chain amyloidosis
Waldenstrom macroglobulinemia
Lymphoma
If you've been diagnosed with MGUS, please post here. I'm a newcomer to this so I value your shared experiences.
All I know so far based on one blood test is that I am at risk for MGUS progressing to multiple myeloma, which is a cancer of the plasma cells in bone marrow. There is no cure. Currently the average survival for MM patients is about five years but much depends on the specialist you choose.
I am at the very beginning of my "MGUS journey" (I hate that term). I haven't had my first six month follow-up blood draw to check for progression yet. Me, I'm leaning heavily on "There's a 70% chance you won't get MM" from my hematologist. Never dreamed I would ever need a hematologist. By the bye, this all came about because an American company had their hand sanitizer made in China, it was contaminated with benzene and I used it.
Can you elaborate on the hand sanitizer? How long ago did you use it and for how long did you use it?
My father died from AML Leukemia that was caused by benzene exposure in the products we used at our gas and service station. He was a mechanic from the late 50's when he came to the US until about 2000. I worked with him from 76 until 92. I used the same products he did, washing grease from our hands. I did ancestry DNA, uploaded my DNA to a company called promethease a few years ago, Benzene exposure was listed as number one or 2. Have you ever been tested for benzene exposure?
Unfortunately, promethease doesn't do benzene exposure since my heritage bought it. They also stopped showing a few others.
I had a six-month checkup with the oncologist today. He says my numbers are getting better, so my next appt will be in a year. I asked him about progression from MGUS. He looked startled and assured me that I have only a very small amount of abnormal protein, so I shouldn't worry about progression.
I am no longer anemic nor am I hypercalcemic, which were the two factors that got me a visit with the oncologist in the first place. The anemia went away when I started on my liver diet (nuts, plant-based foods and fish). Hilariously, the hypercalcemia was a result of not realizing I was drinking calcium-enriched almond milk. D'oh!
I have my appointment with Dana Farber next Friday.
I am not expecting much to move (I tested my IGM antibody a week ago and it is actually lower than normal) but this will be my first *real* post vaccination testing so..
I was first diagnosed because I had a higher calcium number but it went away. Not sure it wasn't excessive calcium foods.
I wanted to point out this to everyone. December 10th starts a big blood cancer conference (that usually every year has a ton of new revelations) and this year is no different. https://www.onclive.com/view/ash-202...ic-cancer-data.
Some interesting things that I saw (some part of the link some not).
* Who knew but there is something called MGiP... which is Monoclonal Gam of Indeterminate Potential... meaning a number lower than .2gl spike (and it seemed to involve cutting edge way of testing that not all medical places have) And that turns out to be VERY common. About 28% of the population they tested (As part of the Promise Study so that might have already been a group that was prone).
* Over all MGUS looks to be far more common than they thought and associated with aging (though still unclear if aging is the problem or something that goes along with aging say high sugar).
* I don't think it is on the link, but another study coming from IMPACT shows that people with MGUS had a less robust response to the vaccines.
* Another study says that people with MGUS are NOT more at risk of infection and death from covid.
I would search for MGUS on the news feeds because I am sure there will be a lot of news.
^ Wow! Thanks for all that. I'll study it in depth tonight.
It's funny about calcium. As schoolchildren, we had milk at breakfast, lunch and dinner. Whole milk. As a 68 year old, I can't tolerate the calcium-enriched almondmilk -- which of course isn't really milk at all but almond juice.
Arya, it seems you were onto something when you speculated there might be some benefit to early screening for MGUS, judging by the iStopMM study in Iceland.
Arya, it seems you were onto something when you speculated there might be some benefit to early screening for MGUS, judging by the iStopMM study in Iceland.
Yes I am sure it is far more common than we know right now. But I am sure insurance doesn't want screenings followed by appointments at cancer centers.
Question... I want to mention this to co workers at work (one black) crazy? Too much for work?
Well I think I had some really good results this time.
Since the first day I was diagnosed I allegedly had two spikes. I was bi-clonal. I could never get an answer on that. Whenever I asked, they would say something like, it was nothing to worry about. Both spikes were the same kind. IGM - Kappa. These two spikes had me listed at a higher paraprotien 0.4 g/dl (adding the two spikes together)
So the first time I went to Dana Farber it came back also with two spikes... but then in September the spike seemed to go away. So I asked my doctor.
She said that I didn't really have two spikes at all that it was a *false* second spike. She said it was listed on the path report.. which said
Quote:
The findings are consistent with monomeric and pentameric forms of IgM paraprotein, and do not necessarily indicate biclonality.
The doc says pentameric means that the paraprotien gets all stuck together and can appear to be a spike, but is just the first spike being all stuck together. Non stuck together paraprotien is monomeric.
If true that means my spike is very low. 0.23 g/dl.
Well sure enough I just got back my third test and there is only one spike... 0.23 g/dl.
In addition, my light chains have been going up all year but they dropped to a very low number (also normal). And though my ratio isn't normal it is VERY close. Top normal is 1.62 and mine is 1.7.
My immunoglobins were slightly out of wack but nothing to worry about. Igg and Iga were normal.
If I am going to attribute it to anything this is the first time I have had tests after losing 50 lbs and without vaccination (I was vaccinated like 3 days before the last tests).
My doctor suggested my not coming back for 6 months. My two year anniversary is coming up in February and I can say I have been stable.
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Colin Powell
