Connect
Comment receiving replies
Bone marrows get to the heart of dealing with MGUS. It’s how the doctors define where the disease state is at. PC proliferation cytology and genetics all come into play. But they need BM for analysis. I have SMM. It’s precancerous and can stay that way forever. Normal life. Stable blood results. Every 6 months. Been that way for over a year. Support is good for those you want to incorporate. Family or friends. Telling co workers is a gray area. What you go thru and how is all different with unlimited tangents spanning the globe. There’s no right or wrong way. But there is your way.
Replies to "Bone marrows get to the heart of dealing with MGUS. It’s how the doctors define where..."
@msh466 Referencing the who and when to tell....
Although MGUS is not cancer, your MGUS disclosure in life insurance applications is likely to cause denial.
I say this from personal experience. My term life "termed out" and that company denied my application for subsequent coverage based on the MGUS diagnosis.
That was harsh reality.
Connect
@paulita
On the bone marrow biopsy, I have a slightly different perspective. This is a conversation that one should have with their treatment provider, but I think that it's important to be well informed about any invasive procedure that's either diagnostic or treatment focused, so when I spoke with my hematologist/oncologist about this, I did a deep dive into the literature. It seems that it was once imperative for clinicians to order a blood marrow biopsy with a MGUS diagnosis. I think now they're looking at it as something that they perform for higher risk patients. My numbers have been very stable. This was a 2007 study but there have been other subsequent studies that replicate these conclusions. "Conclusion: There is a linear correlation between serum IgG and IgA immunoglobulin with plasma cell percentage in the bone marrow. Bone marrow biopsy with plasma cell percentage of 10% or higher may be predicted in patients with MGUS with IgG or IGA above 2g/dl and 1.5g/dl respectively. "
So they monitor IgG and IgA immunoglobulin and the data supports that this will align with the plasma cell percentage in your blood plasma.
I tend to be compliant with medical directives but I do ask questions so my question was what will we learn from a bone marrow biopsy that isn't provided in the monitoring of IgG or IGA? The answer is that the diagnosis is more definitive. I think when you have the M protein in your blood it's a pretty definitive diagnosis the question is it MGUS or smoldering multiple myeloma? So then my question was "at what point would you begin to treat MGUS or smoldering multiple myeloma.". He said "oh your numbers are very low," and threw some numbers out there that seemed very far away at the low rate my numbers were rising.
So I haven't done a bone marrow biopsy and I don't intend to unless I get kicked up into a higher risk category.
I think the crucial question for me was to ask at what level of progression would require intervention.
Also, there is interesting research with promising results using turmeric to forestall progression and even lower numbers. I can only give you anecdotal information but there is a lot of information if you Google. My numbers were slowly rising and I read about the success that some of our Connect members are having taking turmeric. it is very poorly absorbed so I take curcumin at 1000 mg twice a day. I am seen every six months and so I have two rounds of blood tests that showed that my numbers were declining slightly. I'm going to see my hematologist/oncologist again in jJuly so I'm hopeful that this trend is going to continue. You might look into that. I did speak to a pharmacist to see if there was any potential interaction between other medications that I'm taking and the curcumin.
Will you let us know what you decide on the blood marrow biopsy?