Newly diagnosed with MGUS and so anxious

For MGUS there are no symptoms. Calcium levels will be elevated but that is usually when bone lesions start or CRAB symptoms start which means MM which you do not have. Rarely does MGUS evolve into SMM. Then rarely does SMM evolve to MM. it’s usually a slow process. Having abnormal M proteins and/or elevated immunoglobulins is the first indication of MGUS. A baseline has been documented. Now future lab results will be compared to this in determining progression or stability. I have SMM. It has been stable for a year. I’m older at 67 and how I deal with my anxiety is knowing that I will be under a doctors care in dealing with this for the rest of my life. Nothing will slip thru the cracks. Clinical trials are also available. Living an active life is my main stay. I would be lying if I said it’s not always on my mind. But therapy and meds are helping me cope.

@scared58 First, welcome to Mayo Clinic Connect. Here, you will find many others who feel the same way you do. Anxious, scared of the future and what their new diagnosis might mean to them. It's way too easy to go down the Dr. Google rabbit hole.

Frankly, our minds can play tricks on us, and let us believe our bodies are taking on so many symptoms. Remember, we are aging as we go, and our activity levels change. As do our interest levels. Add in a new-to-us medical issue and off we go! Just the anxiety alone can make us feel like we cannot cope, cannot get through a day "like we used to".

Trust in your medical team, which includes you. Continue to do those things that bring you pleasure. Take time for yourself, and do not dwell on possible future concerns. MGUS rarely advances to SMM, and most people live for a very long time knowing they have this condition.
Ginger

I am a 75 year old male who was diagnosed with mGus close to 20 years ago. From that point on, I was very regularly monitored every 3 months and continually had all the 'tests' (routine blood work, full-body x-rays, CT scans, Petscans, bone marrow biopsy (many times), etc.) As my mGus values contined to rise, I was told that I was being monitored for potential multiple myeloma. My levels rose overtime so things were looking more and more to be multiple myeloma. April 2023, I met with my oncologist anticipating hearing the same status as had become routine oveer the past years. However, at that meeting, I literally got hit with a 2x4 right between my eyes when I learned that my paraprotein (IgG) had 'chosen' not to remainas mGus or morph into multiple myeloma but rather became an extremely rare Non-Hodgkin's Lymphoma in the form of an indolent (slow growing) blood cancer, named IgG-secreting Lymphoplasmacytic Lymphoma (LPL). Even though it is indolent, currently there is no cure for it ... All that can be done is to treat and manage it regularly. Maay 2023, I commenced cycle 1 of a scheduled 6-cycle chemotherapy treatment with Bendamustine and Rituximab. About 4 days after receiving chemotherapy, I was totally wiped (like a truck had run over me): however, as the rest of the month went on, I felt 'normal'. Every cycle/every month saw the same things happen. When it was time for my 6th cycle of chemotherapy, my oncologist cancelled it saying that the therapy was virtually ineffective on me and had stagnated/plateaued at paraprotein levels much lower than anticipated. In November 2023 with chemo behind me, I was placed on a BTK Inhibitor, called Zanubrutinib, that saw me taking 4-80mg capsules of active ingredients every day. At least, I could do this at home and no longer had to make monthly trips to the hospital for 2 days of chemo every month. After having taken 15+ months of Zanbrutinib, my blood cancer could best be termed as stable. The level of my IgG paraprotein had stopped progressing while at the same time, Zanubrutinib had not caused those levels to regress either.

In spite of all of this, I continue to be active and, in spite of being severely immunocompromised, live my life as passionately and as positive as possible.

scared58, I do not know about MGUS but I do know about being diagnosed with a rare blood cancer (PV). I did the same thing you speak of, researching on the internet. I believe the internet can be our friend or bad information overload. It is hard to tell which is which sometimes. It is very easy to go down the negative rabbit hole. I know, I did it myself. One comfort is to hear from other people with your condition. I do not know anyone with the same condition as I have. This internet newsboard, "Mayo Clinic" has been a great comfort for me to be able to connect with others just like me. I choose to stay active. I go to my gymnasium, and am active in several veterans groups. I have very few symptoms from my PV and refuse to be taken down by this mysterious genetic mutation I have. I suggest you do not withdraw like I did after my initial diagnose but continue to do everything you can. I wish you the best. From the home of the Kentucky Derby, Lousiville.

Thank you after a tearful weekend I am back on track and not feeling as panicked
I hope you continue to be positive and remain stable

Thank you so much for your reply
I am feeling more balanced today.
I do get frustrated with my body previous to knowing about this so concerned about something extra as get a lot of pain and weakness generally but I am going to avoid Google and try to be less anxious

Thank you so much
I know I am probably being overly concerned it’s the unknown I think.
You are being so proactive which I hope I will be too
I definitely feel more my old self today
Take care

Thank you , you have given me hope and inspired me to be positive and fearless
I hope you are doing well please take care

You have a lot going for you right now. You are not overweight, eat healthy, used to be very fit and an avid gardener. These are all positive activities that can battle any ailment one can have. With that being said...go play in some dirt and sprout some veggies and flowers.

It comes and goes our emotions. Hard to keep them in check. If I feel physically great today but constantly worry mentally about tomorrow am I still ok? It’s a hard and delicate line to follow. Drives me crazy with questioning my existence in a past tense while forging ahead to a beautiful future. Full of contradictions. So in the midst of all of this it’s ok to cry. To let loose. But also be remind full that as the new day dawns so do we. As magnificent as the sun we shine on others to soothe and reassure that your not alone.