Does anyone else have MGUS?

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.

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

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.

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!

Hi Becky 1024,
Thank you for sharing and I did not know about the vitamin and/or garlic. Definitely, good to know. It certainly addresses why they want to see every (3) months for the past two years. My IGG has been in the low 2000s sometimes higher, but generally low 2000s. My FLC ratio is now 2.06 and my Lambda is now 10.6 with my Kappa 21%. It was a little higher but came down a little since June of this year. Believe it or not I am more concerned with my bone marrow being hypocellular (not making enough cells) as I am thinking would I need a BM transplant down the road as I get older. I want to know prepare myself if you know what I mean. Thank you again for the advice.

Mitten1

Yeah, I know what you mean about numbers. My new pcp wanted to get notes from my doctors but there are just to many. If I were dead, I’d be a zombie. With so many parts of my body failing, I chose the top 7 doctors that are keeping me alive. The medical problems are so serious, any one of the 7 will kill me, sooner or later, preferably later. Heck, 3 of them are genetic defects and 5 of them are birth defects. It’s a losing battle mom, take one step forward and then two steps back. No wonder the doctor physically had to pull me out of her. I probably wanted the safety of being inside her, knowing what was waiting for me out here.

My poor body is being ravaged by to many bad guys. The doctors can’t focus on one disaster without another doctor stepping in the way. I don’t even have a fighting chance to choose what I want them to focus on, my blood or heart because they’re involved in a major battle inside my body. My brain is ready to jump in anytime, throwing disaster bombs. Get this, a mini stroke, seizures, peripheral neuropathy that’s robbing me of both legs, feet, arms and hands. Now it added a level 9 head pain over the entire head. Gee mom, who can I laugh at, if I can’t laugh at myself. Mom, just remember, I have 4 more things trying to knock me off here, got any more surprises? I have more things wrong with me I could put on the list but I’m already depressed enough. I’d cry if it wasn’t so serious but I did enough of that last night.

Take care of yourself Mitten, just think of this saying. “I cried because I had no shoes, until I met a man who had no feet.” Things can always get worse, like last night. I saw a woman pushing a man in a wheelchair, he had no legs at all, wow!!!

Hi Becky,
Quick question...is it all vitamins in general or just certain ones?

Mittens1

That’s the problem with vitamins and minerals in pill form or even foods like cereals. The government gives you guidelines as to how much you should have daily. Unfortunately, almost any vitamins or minerals you take add up. Pretty soon you’re past the daily recommendation. Your question is complicated to answer. A vitamin can increase or decrease effectiveness of certain medications. For instance, I love tomatoes but not store bought ones only farmer grown locally. That means starting in June thru November, I gorge myself with them. That’s bad for my kidneys and blood because it becomes acidic, to much acid in my blood.

That creates a happy time for certain types of cancer cells that just loves acidic blood to multiply. So while my kidneys pay the price, my baddies are swimming around inside me having a festive time. Yet there are other cancers that hate an acidic blood because it slows up the production of that cancer.

So to try and answer your question honestly, yes. Anything you put in your body can help or harm you, vitamins included. Even how much you take could hurt you and can cause serious side effects. If you’re tying to help your body and conditions, you have a lot of research to do. Right now I’m deliberately hurting my body because I stopped take a multi vitamin, a mega dose of Vitamin B Complex, plus Folic Acid.

I could literally be causing major and permanent damage to my body and brain, just to prove a point to a geneticist that the small intestine problem is being caused by a genetic birth defect I’ve had to deal with all my life. I’ve only been off them 10 days and I’m already in serious trouble with my heart, kidneys and brain.

So if you’re going to try and help you body, you need to ask this question on google for each thing you want to put in your body exactly like this example. “Is Vitamin E bad for my body?” Or “Is Vitamin E good for my body?” You’ll have plenty of research information to keep you busy. I’ve spent over 100 hours to discover my bowel problem is genetic and dangerous to me. My only living brother had a gallbladder operation, that’s a major, MAJOR discovery because of what the gallbladder does, or rather doesn’t do in the body. Take care, hope this rambling post is of use to you. Becky1024

Thank you for your honest answer- much appreciated. I have an appointment to see my local oncologist next month and I can ask her as well. Then I see my other oncologist in November. I will continue to do my research so I can have a laundry list of questions to ask during my visit. I am part of a research study on MM through Dana Farber. I will also request another biopsy to see it I have crossed over to SMM. The last one stated I was approaching 10%, but less than and they did not give a specific percentage. I figure after (1) year, I would like to see what the #s.
Thank you again.
Mitten1

Had to check in my my doctor less than a week ago as they found d something in my blood, he then goes on to tell me I have a condition called MGUS.
He didn't explain anything that I understood and said was referring me to the heamatologis.
All I know is what I've read online. Am still learning and wonder what should I expect.