Does anyone else have MGUS?

I hope that funeral pre-payment is not necessary to utilize for a very long time. With inflation, it’s a safe bet for all of us though.
Since I was diagnosed, I have met so many people who are MGUS patients. Each has a unique story. There is so much to consider though with co morbidities, age, general overall health, etc. I rely on my hem/onc doc to keep track of all of that and to adopt a treatment plan that will produce the best possible outcome. While I ask lots of questions, I find that I feel better when I shed the anxiety and live my life fully each day. I don’t compare my numbers favorably or otherwise with those of others because there are too many variables.
That’s just what works for me.
Y’all have a great week. We have had MiMi and Papa duty for the past few days. If a two and four year old don’t exhaust you then you have admirable stamina! I’m pooped!

That’s the problem with the human body, it keeps changing from the moment we were born till the day we die. The same can be said about MGUS, our numbers change up and down all the time as our bodies struggled to survive. But there’s one number that tells the progression of your MGUS, that’s your M Spike. That can fluctuate up and down slightly but it will keep increasing as your cancer is developing. The number zero point Five (0.5) is the number to watch for. In December 2021, my M Spike hit 0.56, meaning my precancerous cells are progressing towards cancer. I’d be happy if it dropped below 0.5 but from the way I feel right now, I know that’ll never happen. That’s why I paid for my funeral last week.

That would have been scary indeed. I’m glad to hear there is a decrease this last go-around. Here’s hoping that the IgA continues to decline.
Patty

Mitten1, I was just rereading your post again and judging your condition against me. So I looked at my own diagnosis of Kappa light chain IgM. You and I are in the same type of situation, that being good and bad. IgG is the least likely to progress to cancer, my IgM is the most likely. My Kappa classification is the lesser of the two to be dangerous. Your Lambda is more likely to be aggressive. So your IgG progressing to SMM or MM will need to be watched for a sudden burst of progression. My IgM is progressing to a rare form of NHL and an even rarer form of WM. One that is slowly progressing but also is incurable and less likely to go into remission. I like to use percentages rather than decimal points in watching my numbers. My M spike jumped 25% between May and September in 2021. Then between September and December 2021 , my M Spike jumped another 100%. So between May and December it jumped 125%, now that fact makes an impression on me or you, compared to saying it jumped 3 tenths of a point, right. So look at your results and judge it buy percentages to get the true affect of your progression.

In case you didn’t know this fact, vitamins can thin your blood by weakening the stickiness of platelets. Also, garlic is another danger to platelets. I had to stop using them before my abdominal aneurysm repair to keep me from bleeding to death during a long delicate procedure. Hope things are working out for you. Keep in touch.

Hi, I was diagnosed with MGUS 13 years ago. It was progressing slowly until I got Covid and the numbers increased significantly the IgA went up a 1000 points. That made me a little nervous to say the least. Then three months later the test show a decrease, holy moly it went down, a long with many other test results. This is like riding a roller coaster!

Hi Mitten, sorry to hear your diagnosis, my brother died from MM he developed from being exposed to Agent Orange in Vietnam. Because of that, my Oncologist naturally zeroed in on MM when we discovered I had. MGUS. My precancerous cells fooled her and are progressing into a rare form of Non Hodgkin’s Lymphoma called Waldenstrom Macroglobulemia. My platelet count is also low but still in low normal range, so I looked for foods that can increase them. I also looked for foods to avoid that reduces platelets. Because of other blood issues “I’m damned if I do and damned if I don’t” as the saying goes. You see, I tend to throw clots because to many platelets stick together. I’ve thrown clots that have almost killed me in fact. So my options are to either bleed to death from lack of platelets or throw a clot big enough to kill me because they’re to sticky. It’s a delicate balance, my last count was 170,000, low level is 140,000, 50,000 is a disaster waiting to happen. So as the saying goes, “Be carefully what you wish for, you just may get it”!!!

Hi Becky,
Thank you for sharing your post. Like you... I was diagnosed with MGUS/ IGG Lambda subtype as they put it in 2020, which is slowly progressing towards SMM. MM runs in my family. I am required to see my oncologist every (3) months. Although, still in the normal range, my platelet count since then has been dropping and unfortunately, my bone marrow is hypocellular. I do my research as we all have to be our own advocate. I focus on helping others and having fun. My only thing is I want to know what I can do to keep my platelets from dropping further as that can create even more issues for me.
Mitten1

Absolutely! Happy to chat. It does seem a bit overwhelming when you are first diagnosed. This has helped a lot to chat with others.

Hi @mommatracy5 Welcome to Mayo Clinic Connect. Oh gosh, anytime we get a diagnosis it’s always a time of anxiety and questions, isn’t it?
MGUS~Monoclonal gammopathy of undetermined significance (MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood.
For most people it doesn’t pose a problem but it can progress into more serious diseases. We have quite a few members in our forum who have also been diagnosed with MGUS. I’m posting several links to discussions on MGUS below, along with Mayo Clinic’s webpage on MGUS.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
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- MGUS: Please, let me know I not alone https://connect.mayoclinic.org/discussion/mgus-2d464e/

- MGUS diet: Any tips on food to enjoy or prevent progression? https://connect.mayoclinic.org/discussion/mgus-bgus-diet/

I’d like to introduce you to @momsys and @dazlin who were recently diagnosed with MGUS and @pmm. These would be great people to Connect with for support. ☺️

Where you having symptoms that prompted this diagnosis or was this discovered with a routine physical? Have you had a chat with a hematologist (blood specialist) about the diagnosis going forward?

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!