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Old 12-22-2021, 10:49 PM
 
Location: Redwood City, CA
15,242 posts, read 12,813,333 times
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Quote:
Originally Posted by Arya Stark View Post
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.

Woo-hoo! Way to go!
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Old 02-15-2022, 10:11 PM
 
Location: Redwood City, CA
15,242 posts, read 12,813,333 times
Reputation: 54012
Someone asked me a question the other day that I couldn't answer. "You say no abnormal protein was found in your recent lab work. Does that mean you don't have MGUS now?"

Well, all values were normal. And this was at the end of the analysis: "Normal pattern. No paraprotein seen."

Is it possible to have MGUS, then NOT have it?
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Old 02-20-2022, 09:32 AM
 
Location: NJ
23,789 posts, read 33,241,911 times
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Quote:
Originally Posted by fluffythewondercat View Post
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.


I wondered if you wouldn't reply to my question. Can you elaborate on the hand sanitizer? How long ago did you use it and for how long did you use it?

As I said below, I'm actually positive for benzene exposure, are you? I worked with chemicals for 20 years, I didn't only use hand sanitizer.


Quote:
Originally Posted by Roselvr View Post
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.
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Old 02-21-2022, 12:09 PM
 
Location: Redwood City, CA
15,242 posts, read 12,813,333 times
Reputation: 54012
Quote:
Originally Posted by Roselvr View Post
I wondered if you wouldn't reply to my question. Can you elaborate on the hand sanitizer? How long ago did you use it and for how long did you use it?

As I said below, I'm actually positive for benzene exposure, are you? I worked with chemicals for 20 years, I didn't only use hand sanitizer.
I used it for three or four months in 2020. I had other hand sanitizers as well.

I have never been tested for benzene exposure. My hematologist simply said I had a 70% chance of NOT getting multiple myeloma and a 30% chance of getting it. Obviously I hope my values will improve to the point of 0% chance of getting it. "No paraprotein" is a good thing.
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Old 03-31-2022, 08:52 AM
 
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Old 04-26-2022, 06:10 PM
 
7,200 posts, read 4,468,488 times
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Quote:
Originally Posted by fluffythewondercat View Post
Someone asked me a question the other day that I couldn't answer. "You say no abnormal protein was found in your recent lab work. Does that mean you don't have MGUS now?"

Well, all values were normal. And this was at the end of the analysis: "Normal pattern. No paraprotein seen."

Is it possible to have MGUS, then NOT have it?
Yes there is a kind of MGUS called light chain MGUS. It has no spike. It is also less likely to progress.

But my doctor told me not to get too excited. The spike is an interpretation and can be missed especially at small numbers. It would have to be verified over several months.

Also... MGUS has gone away in people (usually caused by infection) but again, it needs to be a constant result over many years.

Saw this today -- seems like a blood test to measure if you are progressing. It measures "junk" RNA that can tell if things are moving toward cancer.

Quote:
Many competing groups are developing blood tests for cancer early detection, but most are focused on finding cancers in a general population. Ngo and coauthors say there is an unmet need for a blood test that can identify patients with pre-malignant conditions who require further intervention due to a higher likelihood of cancer incidence. In the case of cirrhosis and MGUS, some will progress to cancer, but many others will not. There currently is no reliable way to predict which cases will progress.

https://news.ohsu.edu/2022/04/25/blo...ag9jacNCIOeb3c
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Old 12-22-2022, 06:20 AM
 
7,200 posts, read 4,468,488 times
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Quote:
Is it possible to have MGUS, then NOT have it?
Well now I am facing that question.

When I was first diagnosed... I had a .5 spike. That went on for 2 years.

Eventually I went to Dana Farber and my spike dropped to .2. The doctor told me some of what was being considered my spike was essentially "a reflection" from my real spike. And was not actually real. She explained it this way... my type of antibody looks like a snowflake. While most antibodies look like a Y. So what was showing up was a just antibodies sticking together that were not my type making it look like it was. The actual report said that.. I just didn't notice it because of the terminology.

That fake spike kept going away. I asked her if she asked them to remove it but she said no... she can't even do that.

I am assuming that Dana Farber just has better equipment than my primary care doctor.

So I got my result this time...

Quote:
Immunofixation shows a faint M-spike that is not apparent on the electropherogram and, therefore, cannot be quantitated.
This is the first time they said they were having trouble finding it. Not the real spike not the fake spike.

Alone I wouldn't be excited but this is part of a pattern of it going down. Also my other blood tests - Immunoglobins and Light Chains... are relatively stable in low numbers. They aren't normal but they are just slightly abnormal.

I know this test isn't an absolute and it is just someone looking at it... so there can be a mistake but I am excited.

My doctor has "demoted" me to 1x per year check ups.

One thing I do wonder about is that I donated blood (not to another person) 1 week before the tests. This makes me wonder if that can effect things. But, if it does... that makes me further think that donating blood is a smart move with MGUS because it removes impurities (excess protein) from the body.
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Old 12-22-2022, 11:50 AM
 
Location: San Diego, California
1,147 posts, read 837,379 times
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One is talking about different technologies with different sensitivities. Historically serum protein electrophoresis was the first technique to be used in detecting abnormal proteins. One can not get rid of all the normal proteins but one could put an electrical charge to separate the proteins and evaluate different fractions. They named the fractions as albumin, alpha1, alpha2, beta, and gamma. They noted spikes in the gamma region thus monoclonal gammopathy. One can only see the spike if it exceeds the concentration of the surronding normal proteins. If the peak is below the normal proteins then you won't see it. It's like being on a boat in the ocean and on the surface you won't ever know that there is a mountain range below you if the peak doesn't rise above the waterline.

With later technology we have immunofixation where we get rid of the normal proteins by using selective antibodies to target specific antibodies and antibody fragments. This is much more sensitive because we got rid of the normal proteins to see the abnormal ones. We got rid of the water to be able to see the ocean mountains but we also lost a reference point of concentrations. We lost the referene point with regards to the gamma region.

We can not quantify with immunfixation the way we can with SPEP.

A minor point with regard to MM, MM refers to the Y shaped or minor variations thereof of pathological antibodies and fragments. Waldenstrom macroglobulinemia is not considered as MM. It involves the IgM snowflake shaped antibodies. Slightly different conditions. So IgM MGUS can progress to Waldenstrom macroglobulinemia.
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