Multiple Myeloma, Bone Marrow

@scsteve Welcome to Mayo Clinic Connect! I see this is your first post. Yes, you are in the right group. How can we help you today? I see you were diagnosed six weeks ago. What questions do you have for us?
Ginger

Hi @scsteve, I'd like to add my welcome. Have you had a bone marrow transplant or are you preparing to have one for multiple myeloma?

Hi, I wasa diagnosed with MM 2 months ago. My diagnostic was based in thoracic vertebra fractured and also Magnetic Ressonance with diffusion technic and a Fisher analysis. However the main signs of MM I didn'd and Kappa/Lambda and other exams were normal. Now I am in treatment using Perseus trial and wating to have a bone arrow transplant. I really like to get a second opinion.

Hi, my husband was just diagnosed MM with acute kidney failure. Biopsy on bone marrow scheduled. What are the next step for treatments? He was admitted in ER two days ago for high fever and positive blood culture. He was given antibiotics. GI Dr prescribed Creon but still waiting for authorization dept to approve so we can pick up. He’s been healthy up until his GFR plummeted within 3 months of last labs. He’s not diabetic .. but has dumping symptoms due to 4 feet of small intestines removed 22 years ago..

To the last two posters: As far as I know, everyone here suffers from either some type of hematologic malignancy or a precursor such as MGUS. But no one here is a physician - or at least no one admits to it. Treatment for these diseases - indeed, often the decision whether to treat at all - is a complex matter, and no one size fits all. We can (and do) share experiences. But the best medical advice you can get here is to get REAL advice, preferably from a hematologist / oncologist with experience in treating the disease you have, and from a nephrologist as well if you have kidney involvement.

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.

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.

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.

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.