I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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We believe that my numbers increasing may have to to Covid. I have all 2+2 available but still had Covid in February, lucky a mild case. Ratio shot up and so didn't everything else. The oncologist told my it is no longer if but when I transition to MM. So now blood draw every three months rather than every six months. The waiting game is difficult so I keep very busy and am grateful that I feel great.
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Welcome, @whitepine66. Yes, the waiting game is rough. Even if your MGUS develops into MM (or when as your oncologist prepared you for), treatment may still be watch and wait for a time. Enjoy feeling great and continue to do the things that bring you joy. What keeps you busy and brings you joy?
I find every three months pretty reassuring. Have my next batch in July so we’ll see. I’m not a very good watch and wait person generally speaking. So I think six months would cause me some anxiety.
I find that this mind-body connection thing is the real deal. If you are anxious and worried then you’re not going to feel good. Try and keep your head in the game of life and do things you enjoy. It really does make all the difference.
When I get anxious, and I try to remember that people live for a long time with MGUS And most times the diagnosis is made because people are being checked out for something totally unrelated. So you won’t have significant symptoms and you’ll feel good. If I’m going to have something… I feel pretty lucky. This does not have to advance to smoldering multiple myeloma or multiple myeloma. The statistics are reassuring.
@whitepine66 Talk about adding unwanted anxiety into your life, right? As @colleenyoung mentioned, the waiting game is nothing we should be focused on. But, that said, we all do it.
The biggest majority of MGUS patients go for many years with no advancement of their condition. Our bodies are miracles, and the way all those different systems work together is amazing. Keeping a good healthy diet, moderate exercise, and a positive outlook can be keys to achieving the best we can be. Being aware of possibilities but not focusing on them is easier said than done, I know. Been there, done that myself!
Are you satisfied with this doctor? Do you feel you can tell him how his comment made you feel? Ask him where his prediction came from, scientific proof. As a patient, you have the right to explain how his interaction has affected you.
I really like my oncologist. I am a former math and science teacher. I enjoy our talks about the chemistry and the statistics. Understanding what is going on with my body is reassuring.
Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find out all I can and have so many questions. I’d like to connect with other Mgus people with more experience and knowledge. Thank you!
Hi @mommatracy5 Welcome to Mayo Clinic Connect. Oh gosh, anytime we get a diagnosis it’s always a time of anxiety and questions, isn’t it?
MGUS~Monoclonal gammopathy of undetermined significance (MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood.
For most people it doesn’t pose a problem but it can progress into more serious diseases. We have quite a few members in our forum who have also been diagnosed with MGUS. I’m posting several links to discussions on MGUS below, along with Mayo Clinic’s webpage on MGUS.
– MGUS: Please, let me know I not alone https://connect.mayoclinic.org/discussion/mgus-2d464e/
– MGUS diet: Any tips on food to enjoy or prevent progression? https://connect.mayoclinic.org/discussion/mgus-bgus-diet/
I’d like to introduce you to @momsys and @dazlin who were recently diagnosed with MGUS and @pmm. These would be great people to Connect with for support. ☺️
Where you having symptoms that prompted this diagnosis or was this discovered with a routine physical? Have you had a chat with a hematologist (blood specialist) about the diagnosis going forward?
Absolutely! Happy to chat. It does seem a bit overwhelming when you are first diagnosed. This has helped a lot to chat with others.
I’m Becky1024, please look for my posts on having MGUS. I’ve had it since May 2019 and they’re very informative. For me, I am one of the few people with MGUS which is progressing to Cancer. Till all your testing is done and you actually find what type MGUS you have, it’s basically a waiting process. What scares most people with it, is the mention of possible cancer. Your chances of getting cancer are 1 in 100. You could die of old age without your MGUS progressing to cancer. So don’t get so stressed out, “Stress Kills”, and you can die from it before cancer can join the club. @becky1024
Just click on my posting name @becky1024 you’ll find my posts on there, just scroll down on the word comments till you find them.
Thank you for sharing your post. Like you… I was diagnosed with MGUS/ IGG Lambda subtype as they put it in 2020, which is slowly progressing towards SMM. MM runs in my family. I am required to see my oncologist every (3) months. Although, still in the normal range, my platelet count since then has been dropping and unfortunately, my bone marrow is hypocellular. I do my research as we all have to be our own advocate. I focus on helping others and having fun. My only thing is I want to know what I can do to keep my platelets from dropping further as that can create even more issues for me.
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