Connect
← Return to Does anyone else have MGUS?
Discussion
Comment receiving replies
I was just diagnosed with Monoclonal Gammathopy due to increased protein levels in bloodwork. I’ve researched this and am reading there is no treatment however, it can progress to blood cancer. Anyone who has or had this have it progress to cancer?
Replies to "I was just diagnosed with Monoclonal Gammathopy due to increased protein levels in bloodwork. I’ve researched..."
@oldladydebra1 Welcome to Mayo Clinic Connect! I see you also posted to an existing discussion thread "Does anyone else have MGUS? https://connect.mayoclinic.org/discussion/mgus-diagnosis/
I'll see you over there to answer you!
Ginger
I was diagnosed 1.5 years ago I have mgrs (kidney involvement) I did 6 months of chemo. I am on maintenance now after my numbers start going back up. Soon I'll be on a monthly shot. Where do you live ? I'm in Boise Idaho. I would love to stay in touch since it's rare and I don't know anyone else with this.
I am an active 75 year old and I was diagnosed with anemia, than MGUS 6 months later and 18 months after, with Waldenstrom Macrooglobulinema (WH), a non-hodgkins lymphoma. My lab results are all over the place, high and low, but after bone marrow biopsy symptoms were definitive enough for diagnosis. I am on the watch and wait program with repeat of labs every 3 months. Mo treatment yet,
Connect
Hi Debra @oldladydebra1 , welcome to the forum. There are many people living with MGUS here and a few who have progressed to smoldering Multiple Myeloma or Multiple Myeloma. There is a lot of information out there when you Google MGUS. How was your condition diagnosed?
I think most of us scrambled around looking for answers related to the disorder and what we could expect. The truth is that there are so many variables that my story will be different than yours. Yours will be different from the next person. Although it’s theoretically symptom free, MGUS affects different people in different ways. I have developed neuropathy in my feet for instance.
I suspect that you will get blood work done at regular intervals. I get mine every three to six months. The results take a while to learn to interpret to know what to look out for. I rely heavily on my hematologist/oncologist to interpret these for me.
The bad news is you have MGUS. The good news is that MGUS is not cancer and for most of us, the threat of it advancing to full Multiple Myeloma is small. And also good news, if it does, the treatment options are much improved over what was available previously.
Try to relax. It’s not easy, I know. Write all your questions down and insist that your doctor sit down and answer every one of them. Make sure you have a doctor who is an expert on Multiple Myeloma.
I hope you find this forum useful. There is great support here and excellent members.
Wishing you the best possible outcome. Patty