Opinions via the internet?

Well, why not?!

In September, I presented my “case” on a myeloma forum and I got a few responses from patients there. I also got responses/opinions of a few actual living breathing doctors! Here is one response:

Dear Elizabeth,

There is nothing grey zone about your diagnosis. You have MGUS.

The 10-15% plasma cells was probably established by what is known as the CD138 stain of the bone marrow. This test might be a somewhat better assessment of plasma cell load in the bone marrow than the % of plasma cells identified on the aspirate, but it has caused a lot of angst for patients who would otherwise be classified as MGUS. I have many patients with MGUS who have <10% plasma cells on their aspirate and 10% or slightly more by CD138 staining. These patients have a disease course of an MGUS patient — not a smoldering myeloma patient. And, in your case, while there was a pocket of 10-15% involvement, the overall burden of plasma cells by CD138 staining was 6-8% — that is MGUS! I would also point out that the estimation of plasma cell involvement is VERY subjective on CD138 staining. If you have a pocket of 15% involvement over here, 2% involvement over there, 7% involvement here — the overall degree of involvement read out by the pathologist is subjective and varies from one reader to the next.

I would be very cautious about making important life decisions on 2 bone marrow biopsies. Let’s say in December that your M spike is unchanged, the aspirate shows 3% plasma cells again, but the plasma cell burden by CD138 staining is read out as 10% instead of 6-8%. That is a result within the margin of error of the test — would you really not pursue having a family based on this information?

Could pregnancy affect things? Perhaps, but there is no good data available to help quantify the degree of risk. A diagnosis of MGUS is typically not established this early in life. That is not to say that it does not occur. It is simply to say that people your age are not typically screened. I am sure there are many other patients who presented to their Rheumatologists at a similar age with similar symptoms and never were screened for MGUS. In the overall scheme of things, I would suspect your risk is lower than say someone with smoldering myeloma with 40% plasma cells in their bone marrow and a rising M spike (I don’t consider the rise in your M spike as worrisome).

Lastly, realize that the therapy of myeloma is evolving quickly and people are living longer now than they did even 5 years ago. This continues to improve as new drugs become available.

We are close to December, so it is reasonable to wait and see what your repeat testing shows. But, I would look at all of the data and not zero in on any one number — as I said above, I do not want you to make an important decision as a result of random fluctuation in a test result.

This is an individual decision and a difficult one. But, if your testing is similar in December to what you have now (recognizing and respecting the fallibility of these tests), I would be very supportive of you moving forward with your family.

Let us know how things go in December! Good luck!

P.S. As far as the infections are concerned, I think this would only be related to your MGUS if the levels of normal IgG, IgA, IgM antibodies are suppressed. If they are not, I suspect the infections are a result of exposure in your line of work. Kids are cootie factories!

P.P.S. You are being followed at a terrific Myeloma center wiith a tremendous wealth of experience. Your physician is fully aware of what I have told you and will be able to help make you an informed decision about how to proceed, especially since they have all of the data in hand to interpret. Best of luck to you!

I have to say getting this response was beyond encouraging! Really, like he wrote, how can I change my entire life plans based on two biopsies?

An MGUS diagnosis is not typically made at my age. I often wonder about patients who are diagnosed in their 40s or 50s (or even older) with active multiple myeloma…did they have MGUS in their 20s and not know it? If they have children, did the pregnancy change anything? If they could go back, would they have NOT had children if they knew it could possibly progress their disease?

I feel blessed that I am under the care of a great physician, at a great hospital. I was diagnosed early and can be monitored closely. However, that being said, sometimes I really wish I didn’t know I had MGUS. Ignorance is bliss!

And yes, kids are definitely cootie factories. :)