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MGUS and understanding results

Blood Cancers & Disorders | Last Active: May 6 9:09am | Replies (6)

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@pmm

@angk welcome to the forum. MGUS sometimes progresses to Smoldering Multiple Myeloma. I believe that to differentiate between the two, technically, they have to do a bone marrow biopsy. This will tell you the percentage of the M protein in your marrow. Prior to that assessment, if your blood analysis numbers are low enough, your physician may go out on a limb and say that you have MGUS and not smoldering multiple myeloma. Your hematologist/oncologist may opt to defer the bone biopsy until your numbers rise significantly, and you reach a threshold of concern.
Have you been seen by a oncologist/hematologist yet? A lot of times a PCP does not have the expertise to be able to give you a definitive diagnosis. It would be unusual in my experience, and I am not a medical professional, for a patient to be given a “MGUS or smoldering multiple myeloma diagnosis.” A hematologist who is well-versed in the treatment of multiple myeloma and precursor conditions would say one or the other, if s/he can say with certainty.
I’m sure one of our good mentors can provide some very useful information. Ginger in particular, has some great links to articles that summarize nicely. The best source of information, however, is your actual physician. If you feel that your physician is vague or not specific enough diagnostically, I would encourage you to find a different physician. You need a doctor with unique specialization in multiple myeloma and who will answer all your questions. Ask for a return phone call or appointment and have a list of those questions that need more definitive answers.
Many times once someone passes the “smoldering, myeloma threshold,” like with MGUS, the treatment plan is to watch and wait. Actual treatment may not begin until there is more progression. I would want to know the plan for that. I would want to know which diagnostic tools the physician has used to draw the conclusion that you have either MGUS or smoldering multiple myeloma.
MGUS may or may not produce symptoms. It can be totally benign. Your physician will talk to you about the chances for progression, but for most, it is very low, and even if it does progress to multiple myeloma, the progress in the last 10 years for treatment has changed the paradigm. So don’t get caught up in some of the negativities you will read from Dr. Google and vet your research by reading reputable sources, and not so much what you will read from others on social media.
I think it’s quite normal when you were first diagnosed to be a bit panicked. I was diagnosed three years ago and my numbers are pretty stable although there has been some progression. I receive very good medical attention and have a hematologist/oncologist in whom I have good faith. My blood is drawn regularly, and he scrutinizes for any progression to smoldering multiple myeloma. So far so good!
In summary, the best thing you can do, for yourself is to find a competent, hematologist/oncologist, one who has treated many MGUS, smoldering myeloma and multiple myeloma patients. Ask lots of questions until your curiosity is satiated. Do seek fellowship from fellow travelers on this road. It helps to know that you are not alone. Don’t take on burdens however, that are not your own. We each haven unique subsets of this blood disorder. Some carry much more burdensome associated medical issues than others. Try and relax and live your life. One thing that this blood disorder has done for me is that I try and seize each day as an opportunity to live fully, and live well.
Hugs. Welcome to MGUS group.

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Replies to "@angk welcome to the forum. MGUS sometimes progresses to Smoldering Multiple Myeloma. I believe that to..."

Thankyou so much. I feel like my blood results with the FLC ratio isn’t great and it’s to the smouldering stage 🥺