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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.
Replies to "Any suggestions on how to find a MGUS/MM specialist? Is there a database anyone can use..."
If you live near a major teaching hospital with a cancer center, that's where I'd start. Mayo is excellent, but there are many others as well. Such a facility can direct you to an appropriate hem/onc.
@jdm02 Blood Cancer United (formerly the Leukemia and Lymphoma Society) played an invaluable role in helping me navigate the healthcare system.
Their website includes comprehensive information on how to find care team members - https://bloodcancerunited.org/
You may also contact them by phone. I highly recommend phoning them first.
You can call them between 9:00 a.m. and 9:00 p.m. EST to speak with a trained oncology nurse or social worker. The number can be found by scrolling to the bottom of the website's home page.
I wish you good fortune while on this healing journey.
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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I’m a retired RN and just a few years younger. I get how it’s bothersome they don’t get these neoplasms out of us and instead just wait! Grrr. I have smoldering MM and I’m waiting for a clinical trial spot to open. I have a sense of urgency. And you know as well as I, listen to your patient!
There is a data base but I don’t know it off hand. I found mine by listening to medical lectures on MM. My initial hematologist said it was MGUS but I questioned that when I put my data into the risk calculator. Bmb that specialist did confirmed I was correct.
There’s also the Mayo Clinic that sees patients and Dana Farber. Fortunately I live near a major city with a university cancer center and that’s where my specialist is.
Maybe someone has the database website I’m thinking of. Something tree. Keep researching, we need to know! Ps, my MM specialist said fatigue/exhaustion IS related to the bone marrow disorder. Don’t let anyone tell you it’s not (again, I have SMM). I also have iron deficiency (uncertain etiology but could be SMM). I get iron infusions which do help after about five weeks. Best to you.