Does anyone else have MGUS?

I have had it since 1996. I have recently had low platelets and my immunoglobulins are very low. The lab results show ‘observation’. It is very worrying.

Yes I have MGUS and obsess about it. Information is very limited on severity and what it means. If u had a skin leision your dermatologist would biopsy it and determine whether it was malignant or progressing. MGUS has no standard of care and u just have to wait for any treatment until in turns to MM. Every other cancer has preventative steps I.E skin cancer or breast. But here we have a definite precursor to a deadly cancer and yet the medical community just says wait until it turns. Is that the most ridiculous thing you have ever heard.? Anyone feel the same?

@carlabaz hi there. I have not yet learned to read my lab results beyond the basics and I was diagnosed several years ago with MGUS. I rely on the professionals because I often look at an abnormal result and catastrosize when my oncologist explains that it’s not a big deal.
There are members on Connect who are good at it, and I have used this link, but I encourage you to call your provider to get information related to your test results. There are so many variables such as coexisting conditions, medication side effects and even diet and exercise that are specific to you. You want a provider who looks at all of that and can help you navigate your healthcare needs. Sometimes it takes a few swing and miss attempts to find just the right provider. They may not have the best “bedside manner,” but if they are thorough, take the time to know your whole healthcare needs and take the time you need to understand the complexities, you will know you have found the right match.
https://www.myelomacentral.com/livingwithmm/multiple-myeloma-treatment-monitoring/understanding-multiple-myeloma-lab-test-results
I hope this helps you a bit.
I’m interested in your journey. Will you let me know how it’s going for you?

@kayabbott I haven't learnt to read my numbers yet. I appreciate your blood stats and will compare to mine with notes, this will help me learn. I am having the 24 hour hour urine test in April. I've been easily agitated the last few months and she was thinking maybe she would start my treatments early. She decided on seeing how I got along for another 3 months since I was doctoring with MD too. I don't have the CRAB symptoms yet either. Those scare me. I'll let you know what my numbers are, if thats okay? Hugs

@gingerw
That sure was fast from what I was told would happen. How are doing? Do you have the bone splinters? What are they doing to treat the myeloma currently? I am not tolerant to pain, so that scares me. My next visit with Cancer Center is in April, full labs and 24 hour urine test. I had the Bone Marrow test right after I was diagnosed. My mood has been off lately and she suggested starting treatments early for myeloma in April.

@carlabaz I know the mental state, not knowing, how long do I have....the record that keeps replaying in my mind. I think that live for the day is important to strive for (still working on it) and finding fun things to do each day. MM is a manageable C. I will find out in 2 weeks if mine is confined to my bones, and I've read that chemo usually starts 10-21 days after (I'll let you know).

I have MGUS was diagnosed last October as well by a bone marrow biopsy. Before diagnosis I had intense random sever itching. I was told to stop my hydroxychloroquine to see if that helps which it didn’t. Then diagnosed with eczema, which it wasn’t. Finally they realized it was from the MGUS. I know take Allegra and no longer have hives and itching. Was diagnosed after an ER visit due to fevers for a month, exhaustion and the platelets of 32 low hemoglobin and low white blood count. MGUS is a watch and wait. I also was diagnosed with CCUS.

@kayabbott
Thank you so much for the information. I will have her explain the numbers to me, I don't go back til April. I hope we do start treatment then, no matter what my numbers are. She suggested it at my last visit because my mental state really took a dive. I don't think it was the SMM, think it was just from the outside world. I think a journal is a great plan, I will start that too. Thank you for the link. Going there now.

@carlabaz Hugs to you as well. It is hard, not knowing what is coming and how it will affect us. I'd be glad to help where I can, and it would be good to get a detailed explanation from your oncologist on what all your numbers mean. I plan on keeping a journal of my treatment, reactions (tired days, good days,...). Doctors don't always cross check meds or supplements, to see if some are easier on kidneys or other organs during treatment. Here is a good site for MM info: https://themmrf.org/multiple-myeloma/ . For me, it is best to start treatment before it spreads (a risk with IgA Kappa light chain SMM, less for other varieties).