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Blood Test: Numbers are up, will doctor not start me on treatment?

Blood Cancers & Disorders | Last Active: Apr 8 8:22am | Replies (12)
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@kappaking

I don't think the hematologist that I'm currently seeing is specifically a myeloma specialist, and it's something that remains a concern for me. I started seeing a new primary care physician/internist from whom I sought a recommendation for, specifically, a myeloma specialist. Unfortunately, she appeared to be somewhat clueless. But I've been doing a bunch of reading, and my region isn't short on myeloma centers (I live in a large metropolitan area). Once I get the final diagnosis from my current hematologist, I'll get a second opinion from one of those myeloma centers and continue my care there.

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aczatx47131 | @aczatx47131 | Apr 6 11:42am

I have IgA kappa myeloma. There are only 6,000 folks with IgA kappa in the USA. My Atlanta myeloma specialist knew things my hematologist didn’t. For example, M-spike is not reliable for kappa light chains so serum immunoglobulins need to be measured. My Austin hematologist is listed as a myeloma specialist on the Healthtree website which is confusing to me. Must be that the IgA kappa myeloma folks are few and far between maybe. I consider my Atlanta myeloma specialist to be captain of the ship.

I watch Healthtree myeloma education videos. I read SmartPatients.com myeloma conversations regularly to keep up to date on latest developments in research. I attend the San Francisco and Philadelphia virtual myeloma groups regularly. They are listed on myeloma.org.

This week CAR-T therapy was approved after first line of treatment by FDA. A new BiSpecific therapy will be approved by FDA soon.

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