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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: Sep 19 12:31pm | Replies (818)

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@rhondalee89

I was diagnosed yesterday 2-15-24 with MGUS, the Hematologist/Oncologist just wants to watch it for 6 months and see what happens, I have had a kidney biopsy for protein in Urine and Blood work is all they have done. Is this the protocol for MGUS is just wait and see ? Any help would be greatly appreciated ! My Dad had Multiple Myeloma before he passed.

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Replies to "I was diagnosed yesterday 2-15-24 with MGUS, the Hematologist/Oncologist just wants to watch it for 6..."

@rhondalee89 Hello, Rhonda, welcome to Connect. It’s a lot to absorb, getting a diagnosis such as MGUS, isn’t it? I remember having so many questions and feeling overwhelmed. Then the doc explains that typically, you will be monitored at intervals to ensure that that M paraprotein in your blood doesn’t indicate that you are progressing from MGUS to Smoldering Multiple Myeloma or Multiple Myeloma. It was a relief to me that most MGUS patients will not progress to either.
Depending on what information your hem/onc doctor gleans from your blood analysis, he or she will develop a strategy for monitoring your health. Skeletal surveys, 24 hour urine analysis, regular blood tests and bone biopsy are some of the diagnostic tools he or she may use. The frequency of this testing will depend on how high a risk for progression you carry. It’s definitely a conversation worth having with your physician to get an explanation of the information he/she already has and plan for continued surveillance.
Try not to consult with Dr Google. Information is good, but first speak to your physician so you can weed out extraneous information that does not apply to you. If you don’t feel that you have a handle on what your physician is thinking, I would recommend that you not wait six months to have that conversation. Ask for an appointment or telemedicine consult with your physician, write down all your questions that you’d like to have answered, and make sure you feel comfortable with the plan.
If you’re like me, you will want to take some action to improve your health. Watch and wait seems like a benign response but remember, you have not been diagnosed with cancer.
Even with full-blown multiple myeloma, the advances in treatment methodology have improved tremendously in the past decade.
Have you found your physician is receptive to your questions and willing to explain your lab results to you?
I found this Mayo Clinic information helpful.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
Let us know how things are going for you. Wishing you the best possible outcome.
Patty

Same with my 83 year-old husband's hematologist/oncologist. Nothing new with it has come up in the past 2 1/2 years since MGUS diagnosis. He gets bloodwork done and has follow-ups with the doc every 6 months.

I've had MGUS for 8 years so far without it progressing to any symptoms. I get bloodwork every 6 months and had a baseline bone marrow biopsy 8 years ago; I'll have another if my kappa/lambda numbers or proteins ramp up enough. It is a waiting game in which there is ~1% chance of it progressing to smoldering or MM. Other than getting more answers from your doctor, not a lot one can do other than healthy living with diet, exercise, destress, rest, and such.