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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: Mar 17 1:03pm | Replies (726)

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@raye

Welcome to this MGUS group, @award. I was first diagnosed with IgM kappa MGUS eight years ago. That was a time which coincided with my highest weight ever. Subsequently I’ve lost 10% of my weight by being careful of intake. No latest weight loss gimmicky RX for me. I don’t trust their side effects.

You will want to find a hematologist you feel comfortable with. After trying four different ones, the fifth was a charm and I adore him.

All of us in this MGUS forum may want to contribute a couple of vials of blood twice annually to the Dana Farber Cancer Institute’s PCROWD Study. They send a kit for me to take to my hematologist for blood draws to then be Fedexed back to DCFI. It feels good to participate in being proactive by contributing to future knowledge about MGUS with small gifts of my blood. I believe this research will eventually help others be less alarmed when they are diagnosed.

Wishing you well!

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Replies to "Welcome to this MGUS group, @award. I was first diagnosed with IgM kappa MGUS eight years..."

I am so glad that you are being able to contribute to further studies. I am hoping that now that I have been diagnosed as well as my husband perhaps we can help in someway here in the UK. MGUS is such a difficult thing to get your head around.