Newly diagnosed with MGUS and so anxious

I was diagnosed with IgA Kappa MGUS 9 years ago (I'm 70). So far, still asymptomatic although numbers have been ramping up. My kappa is now 300 and kappa/lambda ratio is 28. MGUS is a wait and see condition with an ~1%/year risk of progressing to SMM or MM. It is good to work through the grieving process and uncertainties of "what comes next?". I try to find fun things to do every day with friends and hobbies. Escaping, destressing, diet, exercise, and getting enough sleep are all important.

Hi Scared,
I was diagnosed last week with MGUS. I’ve had leg pain for a year and am “bone tired” often. I do think it is related and there’s some literature on that. Bottom line is we need to be gentle with ourselves. We can’t create distress on our bodies with worry. Well, we can but we shouldn’t. Next time I talk to my hematologist, at the 3 month lab mark, I’m going to ask about a bone scan to look for lesions. Just to rule that out. In the meantime, I’m going to eat nutritiously, take my iron and vitamin D (correlation with Vit D and MGUS suspected in literature review), and rest when my body needs rest. Maybe throw in prayer and meditation for good measure. Let me know how it goes.
Amber

@scared58 I read through this thread and wanted to offer my support, too. As a trained researcher, I usually dig up as much information as possible. But my DLBCL/Marginal Zone diagnosis presented me with an overwhelming situation where I couldn't do that. I found several trusted resources. I learned enough to get me through the beginning stages and dove deeper as time passed. Mayo and the Leukemia and Lymphoma Society (LLS) were my primary go-to organizations. LLS is an excellent resource that provides info and has an 800 number to speak with a trained oncology social worker 9 am to 9 pm EST Monday to Friday. Even though I see an excellent oncology counselor that my medical center provides, LLS's services helped when I had moments where I needed precise information or resources (including grants) or an extra ear to listen outside of my counseling appointments. I also can't speak highly enough of regular appointments with an oncology counselor if your medical center offers that service. Every bit helps.☺

Thank you yes all about balance letting loose at times. Today has been a nice day x

I am so new to all this I don’t understand all the readings but thank you so much for your support I took myself off out yesterday and felt better for getting out. I am intending to do what I can to be as healthy as possible (lots of berries etc on shop) and continue with hobbies seeing friends etc
Thank you
Take care

Thank you I do take vitamin d and iron so will actively continue to now I did read omega oils may help so I have invested in them too I feel better for being a bit more proactive in my approach I think it helps mentally and hopefully physically too
I am tired but aching not been so noticeable today and I had work too so that’s a great bonus not feeling so in pain.
Everyone’s support on here is helping me to feel so much more positive
Thank you

Thank you
Once again you all seem so knowledgeable and I don’t have much of a clue yet other than my protein reading
I am in the uk I am not sure if you are I don’t know if those services are available but something should be so I will check it out
Thank you I do appreciate your support so much

ResearchGate is a good resource for peer-reviewed pubs on medical and other topics. It allows authors to post papers that might otherwise not be available to a broader audience.

@scared58 Some of us have been on this journey for many years, so don't feel you're behind.☺ Mine started in 2021. The lymphoma societies are great places to start.

Coincidentally, when I was first diagnosed, I leaned heavily upon the online resources from a UK organization called Lymphoma Action. I find their webinars and personal video stories comforting and informative. When I entered the "Watch and Wait" protocol last year, I viewed their video of a panel discussion of patients and doctors discussing what it's like. Again, it was pretty comforting.

Here's some info from Luekemia Action's About Page
"We are the UK's only charity dedicated to lymphoma, the fifth most common cancer. We've been providing trusted information and support for over 35 years, helping thousands of people affected by lymphoma.

Our mission is to make sure no one faces lymphoma alone."

There's another called Blood Cancer UK. Their site has a section dedicated to MGUS. (I'm sure there are more organizations, but it's a start.)
I just discovered them. It seems the UK societies collect more stories from patients, which I find reassuring.

Thank you