People diagnosed with MGUS under 45

@8positive hi there! Thanks for your post it is quite reassuring! Do you kind if I ask what your numbers were when you were diagnosed? I’m 41 and just got diagnosed this week and am quite anxious. Also curious if you made any changes to your diet or lifestyle (alcohol consumption, exercise) after you were diagnosed. Thank you, any insight would be really appreciated 🙂

@amberl99 hi Amber. Wondering if you’ve made any changes to diet/lifestyle since being diagnosed and whether or not you’ve had any recent labs or updates. Thanks in advance!

@theadosi
Hi,
I can tell you depending on your numbers, the diagnosis can be scary at first because a simple google search will always show multiple myeloma. So don’t be anxious, and like I told my parents I’m worried you should be worried and I’m not worried. While I was going through this, my mom was also finding out that she had cancer so you can imagine. But once you actually do more research on sites like the Mayo Clinic, pub med medical journals you’ll get a better understanding of what having MGUS means and how to live with it. I do always suggest for everyone first starting out is put together an Excel spreadsheet with your main blood numbers, which would be your M Spike immunoglobulins your Kappa lambda number as well as the ratio and a few others but it’s important to know what you’re looking at most people with MGUS will never progress to multiple myeloma. It’s 1% a year in terms of progression rate while most people with MGUS are diagnosed at an older age so 1 % a year isn’t much at 65. So it is important to check your numbers now if you go to the iSTOPMM study you can find a helpful calculator on whether or not to get a bone marrow biopsy. I do suggest, if you haven’t already see a hematologist oncologist (Hemoc) and you wanna find someone who specializes in myeloma or plasma cell neoplasm because some hematologist aren’t as well educated in a lot of the new research that’s out now. With all medicine, everything is evolving so educate educate educate. I was diagnosed when I was 37 and then my m-spike was just .08 now about 6-7 years later it’s doubled and 8% involvement. Does your doctor have you on a blood work schedule? I have bloodwork every four months but because of all of my blood work numbers and other things I’m considered high risk MGUS low risk SMM. But remember in the end, it’s our job to be our own advocates so it’s important to do the research and try to make sure you find the most up-to-date information. There’s also a international myeloma foundation that has a lot of info and they will send you a lil booklet to your house. One which I find very helpful for newbies is one on “understand your test results” and “MGUS/ SMM” . Also, your physical and mental health are incredibly important for your well-being. You need to make sure that eating clean and healthy becomes an everyday routine while eating healthy will not stop any progression if there’s going to be some but God forbid it does progress MM you are in a better situation having good physical and mental health than none at all. Also, once you start doing some research on the stuff that goes in our body in the United States as opposed to other countries then you start to realize why so many things that we eat in America are illegal in other countries. I love gardening and love vegetables so I made a huge vegetable garden not only does it allow me to taken healthy foods, but also aids and mental health.

@dmdinapoli81 thank you for your reply! I can’t imagine going through what you did with your mom when diagnosed. My mom and I are very close and she has been so supportive during the last few weeks for me. My spike was .2 g/dl and I’m type IgG lambda with normal free lite chains. My immunoglobulins are within normal range except for igM which was .256 g/dl and marked as high. The more research I do, the more I’m thinking I fall into the low risk category. I did the survey you recommended and the result was quite low. I am 41 and already eat pretty healthy. I keep reading about a plant based diet possibly slowing progression but am really struggling to get enough protein as I usually get most of my protein from Greek yoghurt, cottage cheese and chicken/fish. I’m struggling with the thought of waiting 6 months before checking my numbers again as I fear things will progress during that time. Does it always progress so slowly? Or because most people find out at a later age, they’ve usually already progressed? I don’t know. I don’t want to live my life in fear, but I guess I’m having a difficult time wrapping my head around it all. I saw a hematologist and he mentioned a study on MGUS and plant based diet so I’m hoping he is informed and a good specialist to be seeing. He seemed a bit too relaxed about it for my liking, but then again, maybe I am over anxious? I wish I had some sort of reference point but I suppose I will just have to wait 6 months for that. I’m sorry to hear your numbers have gone up. That must be scary, but sounds like you have a good support system. Thank you for your recommendation of the literature, I am going to request that. I also love to garden but I live in Ontario Canada and can only do my own veggies maximum 7 months of the year 🙂

Sorry I had a few typos lol my m-spike is .8 lol talk to text. SMH. What brought you in to get the workup? Mine was IDA, my Iron sat was like 3 lol yikes, 5 bags later. Your hematologist sounds like they keep up with the new stuff, they know about the plant based study. Which is Awesome! I am IgG Kappa but my IgA totters high and I have never had a normal Platelet count, always high. .02 is still very low but I am not educated enough on IgM variation of MGUS. And yes mostly MGUS progression is very slow if any progression at all. Have they done a 24hr urine? A bone scan? I always tell everyone to get a baseline. I don’t know how Canada does healthcare but tell him to run everything you want a baseline, I know with immunoglobulins different types of autoimmune diseases can affect blood work results. And when it comes to my numbers going up because I track them every blood work schedule I know that they have consistently gone up so there’s really no anxiety maybe because I’ve been dealing with it for so long. But but also because I’ve done so much research over the past six years or so I feel that has put me at ease as well as the support system that I have at home with family. That is absolutely awesome that you garden and it definitely is not easy when there’s a seventh month window if we’re lucky.
I did this form thread because I wanted other young people to see they’re not alone.

Below are some numbers I log.
"M-Spike. g/dL
"Kappa Light Chain. 3.3-19.4 mg/L
"Kappa/Lambda Light ratio 0.26-1.65
"IGG. 586-1602 mg/dL
"IGA. 87-352 mg/dL
"Beta-2 Reference Interval: 0.6-2.4 mg/L
Platelets Units: x10E3/uL LDH

I was diagnosed at 35 and am now 40. First test had M-spike at 0.3g/dL and it has gone up and done with tests every six months. Was stable for a year at 0.84g/dL then it just jumped up to 1.18g/dL. As far as I can tell my doc has been following the standard protocol for MGUS (full body x-ray, bone-marrow biopsy, 6-month CBC blood tests), but I’m starting to wonder if I should consult with another hematologist just to get another option. Any suggestions?

Since my diagnosis and the uncertainty with it, I decided I would control what I could so I have revamped my diet (a severe reduction in sugar and increased plant-based foods), and increased my cardio and weightlifting exercise. Figured that if it ever does progress to MM I will want to be in as good of shape as I can going into treatments. The uncertainty definitely takes a psychological toll, but doing something even if it indirectly benefits the condition has been helpful. I’m interested in what others do to deal with the difficulties of the uncertainty. Thanks!

Hi there. I was diagnosed with 51 as mgus, numbers kept going up slowlyand 10 years later I was SMM.
Don’t jet the worry get you too badly, it is hard in the beginning but after a while you tend to just focus on the checkups and then forget about everything if no treatment is necessary as of now.
All the best to all of you,
Let’s smolder forever 🙏🏼

@dmdinapoli81 thanks again for the info! It’s really nice to have someone to talk to and helpful to have someone at a similar age going through it. Also, someone further along the line than I am. Were you as anxious as I am in the beginning? I’m hopeful I’ll relax over time, but I’m unfortunately a bit of an anxious person to begin with. I’m actually type IgG as well, but lambda. What makes you now considered SMM? They found my spike after I went to the doctor with recurrent infections and back pain. I went for a bone scan and it’s all clear. I should note I have bulging discs in my back. I had no idea that my doctor was checking my proteins, so I guess this would be an incidental finding. I am normally a healthy individual! I’ve always had low ferritin (14 on last test), and I guess it was never investigated but makes me wonder how long I’ve actually had this. Have you ever had iron infusions? My hematologist was talking about it, but I’m hesitant to mess with my blood at all right now. I also had a urine electrophoresis and that was negative. Not exactly sure what that means, but there wasn’t any protein in my urine. Hopefully that’s a good sign. Did you ever have a bone marrow biopsy? My hematologist didn’t feel it was necessary. He also said he wouldn’t have even done the bone scan, but a different specialist ordered that. When they first discovered the spike, did you have to go back for bloodwork after 6 months or did they monitor you more frequently? I really appreciate your insight and taking the time to connect < 3

@jrich1724 hey there! I’m with you. I was just diagnosed this month with MGUS, and the anxiety is real. Do you deal with any other symptoms or is it just a mental battle for you as well? Have you had any other abnormal tests or is it just the m spike you are concerned about? Was the jump just recently and they are still just going to monitor you in 6 months? I understand it’s a difficult waiting game. I wonder if numbers ever jump back down. I’m hopeful for you that this will be the case! So far I have also reduced my sugar intake and am trying to adopt more of a plant based diet. It’s hard for me to get my protein in as I usually get my protein from foods like Greek yoghurt, cottage cheese, fish and chicken. I’m leaning more towards a Mediterranean diet as I don’t want to stress so much about my diet and eliminate foods I love (I read the stress can actually be worse for your general health than what you’re eating). Honestly, I’ve also created a mantra for myself that when I get really worried I say to myself. Something I’ve never done before, but it does help to keep me from spiralling. A few sentences with the key phrase being that if I do progress to MM they will catch it early and they will treat it. The worrying is tough, but hopefully you can get some reassurance from that.

@theadosi when I was first diagnosed I had 6 month checkups for the first two years. The first 3 visits my numbers went up, the my 4th visit they came down. I suppose it is possible that they can come down but we’ll see at my next visit I guess. The anxiety is tough but I find it helps best to channel it towards productive action rather than just worry. For the most part, since the diagnosis I have gone on with my life but perhaps with a little more purpose and focus. Eating well has a purpose, spending time with loved ones has more purpose. Not to say I think I am going anywhere haha, but it puts life in a clearer perspective.
Hope you can find strength in your situation. You are definitely not alone in this condition.