[RRJ2208]

Husband newly diagnosed with IgM MGUS and very scared

by RRJ2208 on Wed Dec 16, 2015 8:04 pm

Hi,

My husband, age 70 years, was diagnosed with IgM MGUS over the summer after an MRI of his back showed an abnormal bone marrow pattern. This resulted in referral to a general oncologist, lots of blood work, CT of the chest, abdomen and pelvis, and a bone marrow biopsy when his blood work showed an M-spike of 0.1 g/dL. The bone marrow biopsy did not show any plasma cells. He had an elevation of his IgM lambda light chain - I think around 4.

Since that time, I have done a lot of reading about MGUS and progression. I have learned that IgM MGUS progressed to Waldenstrom's macroglobulinemia and not multiple myeloma (something that the oncologist never really explained to us at the time we saw her). I have read about rates of progression ranging from 1-2% per year, higher for IgM MGUS, and even higher for people with abnormal light chains (as I assume my husband has), based on the results of some recent research studies.

I called the oncologist after our visit to review the test results, feeling very frightened and overwhelmed, to ask about my husband's risk of progression. She felt it was small, but again, she is a general oncologist with an "interest" in plasma cell disorders. I asked her about the higher risk of progression for people with abnormal light chains, and she said that all people with MGUS have abnormal light chains by definition, so she did really comment on the recent research publications. She wants to see my husband again in January for repeat blood work. I asked her about Waldenstrom's and she said that it is possible for people to live with it for years, and some do not even need to be treated. However, when I researched Waldenstrom's, I found 5 year survival statistics as low as 16% and as high as 87%. I also learned that it is incurable and that the treatment sometimes makes people sicker than the disease.

As January approaches and with it the follow-up visit with the oncologist, I find myself increasingly anxious. My husband and I have talked about not really wanting to know if the MGUS is progressing, as long as he is not feeling sick, since it seems that treatment isn't started unless one is ill (unlike multiple myeloma, where it seems that some people go into clinical trials while still smoldering). He is not averse to getting routine lab work and chemistry panel, but he does not really want to know the rest. Of course, if he was having symptoms, that would be a different matter. We both wish that he had never gone to the oncologist to begin with and even discovered the MGUS, since it has caused so much stress and anxiety, with absolutely nothing that we do to prevent progression and, it seems, a very uncertain prognosis if he does progress.

Can anyone advise me about what the prognosis really is for Waldenstrom's, and how significant an IgM lamba light chain value of 4 is in terms of risk of progression? I am losing a lot of sleep over this. Thank you.

[Multibilly]

Re: Husband newly diagnosed with IgM MGUS and very scared

by Multibilly on Wed Dec 16, 2015 8:31 pm

RRJ2208,

I realize you are worried, but the numbers you put forward for an M-spike and a free light chain value are quite small. I also think you are unnecessarily assuming that your husband's IgM MGUS will turn into Wadenstrom's macroglobulinemia.

You might want to read this paper on IgM disorders, as there is a spectrum of diseases that IgM MGUS can lead to (but it is by no means a given that your husband will progress to any of this disease, especially with his low numbers). Also, I think any data that you find on survival rates, etc will be quite dated and will not reflect the latest treatments that are available to patients with various plasma cell disorders.

Joseph Mikhael, "Ask the Hematologist: A Diagnostic Approach to Patients with an IgM monoclonal protein", The Hematologist, Sep 15, 2014 (link to article)

Given your husband isn't seeing a true myeloma specialist, I think that most folks on this forum would say that your top priority would be to find a good myeloma specialist who can advise your husband of what likely lies in store (and to potentially better diagnose him), rather than go down various rat holes on the web and needlessly worrying yourself about hypothetical situations.

If you let us know what city you are in, folks on this site can make some recommendations of where to find various multiple myeloma specialists that can likely calm your fears.

[RRJ2208]

Re: Husband newly diagnosed with IgM MGUS and very scared

by RRJ2208 on Wed Dec 16, 2015 9:08 pm

Thank you. We are outside of Philadelphia, and I know there is a multiple myeloma specialist at the University of Pennsylvania. I admit to being scared to go there, thinking they will put him through another bone marrow biopsy and so on. We will have to think about it. But thank you very much for your prompt response and help.

[Multibilly]

Re: Husband newly diagnosed with IgM MGUS and very scared

by Multibilly on Wed Dec 16, 2015 9:27 pm

I will leave it to others on the forum to suggest places to go around Philly.

However, I would personally not let the fear of any additional tests scare me off from seeing a top multiple myeloma specialist that can best shepherd you through this disorder. Remember, you can always say "no" to a given test or request to be put under for a bone marrow biopsy.

[JimNY]

Re: Husband newly diagnosed with IgM MGUS and very scared

by JimNY on Wed Dec 16, 2015 11:03 pm

Hi RRJ2208,

You've gotten very good advice from Multibilly. I would just add that, if you're in the Phila­del­phia area, Penn is likely to be your best choice in terms of myeloma specialists, as there are quite a number of them at Penn. There's Dr. Adam Cohen, who sometimes posts here in the forum; Dr. Edward Stadtmauer, who I believe is the most senior myeloma specialist at Penn; Dr. Brendan Weiss; and Dr. Dan Vogl.

I believe Dr. Weiss has an interest in "early" monoclonal gammopathies, such as MGUS and smoldering myeloma.

Good luck, and please let us know how things go.