Does anyone else have MGUS?

@amyboylan1
Hello and welcome to the blood cancers discussion. MGUS is not cancer. That’s the good news. The chance of progression to blood cancer is also good news because it’s very small.
https://www.healthline.com/health/how-serious-is-mgus
We are each different, of course and we do have some overachievers in our group, but for most of us, we deal with MGUS as a watch and wait condition that does not require treatment.
Your hematologist/oncologist will do blood draws on a regular basis (I started out as quarterly and now every six months). You’ll also get regular scans of your bones to ensure there are no lesions. Some get a bone marrow biopsy to establish a baseline of how much of that M protein is in your blood marrow. This also helps a physician to differentiate between MGUS and smoldering multiple myeloma.
I was diagnosed with MGUS three years ago. When I was first diagnosed, I was very anxious about it. I read everything I could get my hands on and listened to the negativity of Dr. Google. It actually made me feel sick. My white count shot up and I just didn’t feel well at all. Once I talked to my physician and read more balanced information that he provided, eventually found Connect and talked to other MGUS patients, I was able to calm down.
Three years out I don’t think much about the diagnosis. I feel good and I’m active and optimistic that this condition will stay stable and see me through the next decade or so. At age 72 I tend to be a bit pragmatic about it.
I’ve learned a few things about dealing with the healthcare arena. It’s important that you have a physician that you have confidence in. MGUS is best treated by a hematologist/oncologist. I want a specialist who has lots of experience in treating multiple myeloma. I hope that it never gets to that point but the gains that have been made in the treatment of multiple myeloma over the last decade are pretty phenomenal and it is very treatable.
I also want to understand my diagnosis thoroughly and I want to partner with the physician and making decisions about my care. So finding the right doctor was very important for me. Quite honestly, I did not get my first choice, but that may have been serendipitous because I am very happy with my care team. I ask lots of questions and I want someone who is current on the recent research. my physician checks off all those boxes.
So when you say that you were recently diagnosed, have you had a chance to sit down and talk to your doctor? Do you know what your plan will be for your medical care? Would you mind sharing this with me?

I was just diagnosed with it and am gathering as much information as I can. It has come as a big shock and I’m experiencing a lot of anxiety about it progressing to blood cancer

I was just diagnosed with MGUS. Does anyone know if there is any treatment to help keep it progressing to myeloma. I was told no but I’ve read otherwise. Please help. This has come as a big shock.

@steveutnv we are all so different with different coexisting conditions. The question that you are asking, I believe, is what is the threshold for concern about your blood analysis? That is an excellent question for your hematologist/oncologist. At what level would the concern rise to a level where your physician would consider treatment? What might that treatment look like?
It is sometimes very challenging to get a doctor on the phone so you might try to get a telehealth appointment which he or she can charge for… That sometimes makes the time that they spend talking to patients more palatable.
Will you let me know how this goes for you?

He called me back and says he's watching it and my next adventure will probably be a bone marrow biopsy. I also have thrombocytopenia and the low platelet count concerns me more than MGUS.

@coug42, you may also be interested in these related discussions:
- Diagnosed with MGUS/Amyloidosis
https://connect.mayoclinic.org/discussion/diagnosed-with-mgusamyloidosis/

- Diagnosed with both multiple myeloma and amyloidosis
https://connect.mayoclinic.org/discussion/multiple-myelomaamyloidosis/

I was diagnosed with MGUS four or five years ago, and have been seeing the same hematology practice since then. He tells me everything is stable, but I just looked at my blood work from a month ago. I see my recent free kappa light chain reading (52.8) is way higher than the reference range 3.3-19.4. Six ago that reading was 54.0 so at least it's down a bit, but a year ago it was 46.0. I left a message for the NP I see to call me about it but haven't heard back - he didn't mention it at all in my recent visit. Should I be concerned?

I have had MGUS for 4.5 years. The strategy has been to monitor it with blood tests. The changes of it become a cancer is 1 to 2% per year. How ever mine just added Amyloidosis to the MGUS. It’s a bit more of a problem, but not uncommon for MGUS to add Amyloidosis. Talk to you doctor to be sure he’s watching for this, he probably is. My showed up first when I had carpal tunnel issues in both hands. It is not unusual for people with MGUS to have this because Amyloidosis is a build-up of small proteins similar to the pieces of protein associated with MGUS, just a decent question to ask your doctor about. Hope things go very well for you. It’s possible you could have MGUS until you pass away from something else and it may never cause you a problem.

I started with pheriferial neuropathy in early 2018. After a few years I got a new Neurologist. He tested and retested a few things and said it's SFN. I been taking Pregabalin in 2018. Just 2 months ago, my doctors PA orders a few other test and one was kappa/lambda lightcell serum levels. My kappa was on the high side but did not seem that bad. That is when I did some research on the kappa/lambda tests and saw MGUS. Then today I saw my family doctor and asked. He said many people can have high kappa levels but no blood Cancers. I also saw the M Protein test and it was negitive. I will see my Neurologist in the fall season for another followup. Oh ya one more thing, I am a liver transplant patient since 2000. Has a second transplant in 2017. The first Neurologist said my neuropathy is from the immune medication, Prograf/Tacrolimus. My second doctor never confirmed this. I asked my Heptologist if we can reduce my Tac meds and we did that since I never had an organ rejection episode. So who really knows what the heck is going on!

@harley22 and @coug42 It's not unusual to have a protocol of watch-and-wait when it comes to MGUS. Having a knowledgeable hematologist oncologist is crucial, in my humble opinion.

Yes, there is a lot of information out there from Mayo Clinic, and also the International Myeloma Foundation [myeloma.org] It is not to scare you, but educate you. MGUS does not always progress to the next stage, and if it does, it can take several/many years. An educated and informed patient is always going to be in better position to address whatever may come in the future, and and handle what is going on in the now!
Ginger