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Hi @rae77 @oliviahutson @kayabbott and @becsbuddy. I moved this discussion to the Blood Cancers & Disorders support group where there are many members talking about MGUS, smouldering myeloma and multiple myeloma.
Click this link to see all discussions related to MGUS https://connect.mayoclinic.org/search/discussions/?search=MGUS
Olivia, the most typical, common treatment for MGUS is “watchful waiting”. I actually prefer the term active surveillance as watchful waiting can seem like inaction. Active treatment like chemo is not generally administered in the early stages of MGUS as the disease may not progress or progress very very slowly.
Olivia, MGUS doesn’t usually cause symptoms. How was it discovered for you?
Rae, what type of chemotherapy are you on?
Replies to "Hi @rae77 @oliviahutson @kayabbott and @becsbuddy. I moved this discussion to the Blood Cancers & Disorders..."
Hi Colleen. They have me on Velcade and Cyclophosphamide, and I also get Daratumubab infusions. My Hematologist actually consulted with the Mayo Clinic regarding my treatment, and this is the cocktail they came up with. They had to try something else to prevent another hospitalization for kidney failure. Thus far, it seems to be working. I have one more cycle of chemo left and I’ll be done as long as my blood work is good. yay! But I’ll still continue to get the Dara for another 6 months, I think. I keep hearing how unusual my case is, so it’s no surprise that my treatment plan has followed suit.
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Thank you Rae. I am not on any chemo. Went in because I wasn’t feeling good at all and couldn’t work out because of bone pain, high heart rate etc. Because my labs starting coming back not normal they sent me to a hematologist. My local hemoc doc thought it was Amyloidois. I went to Mayo and they are saying no. Just MGUS. But I am not well.
I go back to Mayo for multiple biopsies of my GI track in nov.
There is one test Mayo is waiting to get back called the FISH test as I came back with high risk for FISH.
I am just so frustrated because I have so many symptoms and nobody is giving me real answers to get better.