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MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio
Blood Cancers & Disorders | Last Active: Aug 3 1:59pm | Replies (203)Comment receiving replies
@nancyworld
Even the specialists seem to be very specialized. I poked around until I found someone who specializes in the treatment of multiple myeloma. I hope never to have multiple myeloma, but one should be prepared.
Mayo may work with someone in your area. Or maybe Mayo is in your area? At any rate, various members of this forum have been assessed or treated there and they have some top notch people.
My anxiety goes amuck if I don’t have confidence in my provider. Don’t tell him, but he was not my first choice. I was unable to get into see my target doc in a timely manner and he was suggested as a substitute. It turned out to be a good fit. He is experienced, stays on top of the new data, is deliberate in his game plan but listens to my thoughts as well. He answers all my questions and doesn’t make me feel like I am wasting his time. He also isn’t quick to do more testing than is necessary to support a diagnosis. He gives me the options and the associated risk, pros and cons. I was a medical social worker for 15 years and have seen the gamut. So this is what I am looking for. If my numbers indicate progression, we have a game plan. I’m good with that.
You have educated yourself and had a diagnostic workup. Think about what kind of clinician you would work well with. Talk to people who know the players and find yourself an expert in the diagnosis and treatment of multiple myeloma. (Let me know if you find someone who can deal with the neuropathy. I will travel to go see them myself. That seems to be a mystery. )
Once you find a good one, try to relax and live your life. The anxiety and worry are not your friends. They will make you feel sick.
Best of luck. Let us know.
Patty
Replies to "@nancyworld Even the specialists seem to be very specialized. I poked around until I found someone..."
@pmm, thank you for your kind response. Yes, I've been a Mayo patient for over 20 years. I did find a hematologist here who's very impressive, doing research into the factors that cause MGUS to progress, and who also seems patient-oriented. I'd love to see him at some point.
They just seem to have criteria for referring to a specialist that I'm not clear on, and that I seem not to be meeting. I should be able to find out more in January about what those criteria are. My mother is in the hospital now with major heart problems so I'll be waiting to do more with my own problems.
I'm definitely not craving chemo or stem cell transplant. I applaud the folks who are dealing with it. But I also don't want this neuropathy to progress irretrievably, or watch while whatever's causing it (amyloids not picked up on biopsy? inflammatory reaction to circulating free light chains?) affects other organs. Fortunately, my heart and kidneys seem good right now.
I'll probably get by with doing my own FLC testing for now, and hope to be able to see a good specialist as needed.
EDIT: typo.
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And it occurs to me that maybe what you are asking is if “watch and wait“ is a good option. For me, it is. I am seen every 6 months and absolutely don’t want to start treatment until there is efficacy because the condition is ripe for a good response. You have to remember that “treatment” is not only not pleasant, but often doesn’t discriminate well between what is good and what is not in our bodies. It can be harsh even though curative. My plan is to eat well and care for my body as much as possible, hoping that I never need treatment.