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MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio

Blood Cancers & Disorders | Last Active: Jan 1 2:01am | Replies (172)
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@deborahjb

Hi Patty, Thanks so much for responding with your sage advice. It really helps me to hear from other in similar MGUS situations. In answer to your question, I'm a patient of a hematologist at the Schar Cancer Institute associated with the INOVA Fairfax (VA) hospital. I go back in April, and if my numbers continue to progress, I will definitely make an appointment with an expert at one of the better known cancer centers. May I ask how you chose Mayo or MD Anderson? Are they better than other centers such as Memorial Sloan Kettering or Johns Hopkins? I hope you continue to be stable.
Deborah

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Replies to "Hi Patty, Thanks so much for responding with your sage advice. It really helps me to..."
Patty, Volunteer Mentor | @pmm | Feb 23, 2023

Deborah, my relationship with both are vicarious with my late husband and good friend…Mayo and MD Anderson respectively.
My husband was diagnosed with terminal lung cancer at age 58. We went to Mayo for a second opinion and although they were unable to offer treatment beyond what he was already receiving, David got good care and I believe the workup was beneficial in that it affirmed our treatment strategy. We were living in Western South Dakota so we went to Rochester. I would probably opt for Phoenix as I have braved enough North Country winters.
My good friend’s spouse was a patient at MD Anderson quite recently. He, like David, was fighting hard to beat a terminal cancer. They gave him some more good time which is precious if you have good quality of life.
So I would choose one or the other. Both have outstanding clinicians, well-qualified to treat Multiple Myeloma patients.
My lambda/kappa free light chain ratio is inching up but still well below the threshold of treatment. Statistically, my particular flavor of MGUS is likely to progress. Could be soon, could be 15 or more years from now. If I got a vote I would prefer later than sooner! Better yet, not at all.
I am a empiricist at heart. They (major research facilities) are making great strides in the treatment of multiple myeloma. I believe that we MGUS patients will benefit from that research.
Keep the faith.
Patty

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