Does anyone else have MGUS?

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!

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.

@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.
Ginger

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.

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?

That seems really pessimistic of your oncologist to project on you that the worst will definitely happen. I would look for a different doctor. Can you find one who specializes in blood disorders? A hematologist? I found one I liked after rejecting the first four! Yes, that’s what it took to find one I like. He tests the same and additional of related blood tests. He helped make it possible for me to get Evusheld injections. Now I will feel safer to venture out. Yes, I’ll continue wearing a 3M N95 Aura mask when I do. So glad to have found them at Home Depot.

Remember you are the ultimate boss of what physicians you choose to follow. There’s power in that thought! Wishing you well in your quest to find a doc worthy to encourage and guide your journey forward. Be of good cheer! Onward!

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.

News regarding What To Do if your covid immunity is low: My fairly stable but gradually increasing IGM kappa MGUS of 7 years apparently led to low response to covid vaccines. Moderna 2+2 was ineffective. Due possibly to a number of co-morbidities, I was accepted to receive Evusheld yesterday. Total 600ml of two related formulations, one in each side of my behind. All went well. That should keep me from needing to sequester as much for the next six months when it will be necessary to repeat this regimen.

Suggest asking your doc to check your covid immunity to determine if you may be a candidate for this new vaccine. Warning: it IS new. At otherwise high risk, I went through with it. So far, so good!

Good luck White Pine and everyone!

I also have MGUS diagnosed 12 years ago. Everything has been pretty good numbers increasing slowly until this last year. IGA went up over 1,000 points . IGM had dropped a little but no lieasons. Just go on with a positive outlook .

Yes, my IgM kappa MGUS, also named paraptoteinemia, was diagnosed in 2015. My blood gets special tests from a hematologist I like every six months. There are probably lots of others with varieties of MGUS out there who have not been diagnosed. We just carry on and keep living our lives.
You may want to get your covid vaccine immunity checked.