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Multiple Myeloma, Bone Marrow

Posted by scsteve @scsteve, Jul 6, 2021

Am I in the right discussion group?

Diagnosed 6 weeks ago.

Tx..... Steve

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actanonverba | @actanonverba | Aug 27 11:20am
In reply to @jdm02 "Any suggestions on how to find a MGUS/MM specialist? Is there a database anyone can use..." + (show)
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Any suggestions on how to find a MGUS/MM specialist? Is there a database anyone can use for this information?
I was dx. with MGUS 10/24. So far my M spike is low .08 & show no evidence of light chains except one lambda.
I originally started with slightly low gamma globulins about 2 yrs. ago. (Normal now) which began my journey.
I’m 68 & work 2 days/wk as a RN but I’m not sure if it’s my age, demand of my job or MGUS but I’m not as energetic as I was. Still going good but as I said, not sure.
I currently see a hematologist that I do like but I would be happy to see someone that is well experienced in MGUS/MM. I’ve been told there is no tx. for MGUS. Bothers me a bit.
Thanks.

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I was diagnosed with MM three years ago and have been fortunate to live near major cancer centers and through research (on line searches) and recommendations I have been able to find two exemplary oncologists. Dr. Amrita Krishnan at City of Hope in Irvine, CA, who quite literally saved my life, and Dr. Rahma Warsame at Mayo Clinic in Rochester, MN who has been absolutely phenomenal as we have transitioned my care over to her. Based on my experiences you cannot go wrong with either of these institutions and if those are logistically challenging for you consider reaching out to them and asking for recommendations in your geography.

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Camilla & Gregory | @bcamilla74 | Oct 5 2:15pm

My husband just started this journey. Dialysis and chemo for lesions on spine - specifically Lumbar/Sacrum area. Coincidentally, 20 years ago, he broke his back in a motorcycle race and was run over twice. Lumbar was shattered and shoved into his stomach cavity. Had a re-built lumbar with bone graph and hardware. A year later he sheared the titanium rods in a trike accident on the beach and had to have all the hardware removed. Why would the myeloma focus on this?

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Camilla & Gregory | @bcamilla74 | Oct 5 2:23pm
In reply to @amberl99 "Please get a myeloma specialist. Nothing less than an expert, one who sees MM patients all..." + (show)
Profile picture for amberl99 @amberl99

Please get a myeloma specialist. Nothing less than an expert, one who sees MM patients all the time, not a hematologist/oncologist that only sees MM patients every once in awhile.

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@amberl99 Gregory started his first run on Chemo. Plan is to transfer to mainland for bone marrow transplant after he’s completed 4 cycles of Chemo here on Big Island at East Hawaii Cancer Center.

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