Connect
← Return to People diagnosed with MGUS under 45
Discussion
People diagnosed with MGUS under 45
Blood Cancers & Disorders | Last Active: 10 hours ago | Replies (24)Comment receiving replies
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!
Replies to "I was diagnosed at 35 and am now 40. First test had M-spike at 0.3g/dL and..."
@jrich1724
Thank you so much for sharing! I think with MGUS or SMM, getting a second opinion is always a personal thing. I suggest that if it will give you peace of mind, DO IT. Find someone though who specializes in myeloma or plasma cell neoplasms. If you had a BMB what % of involvement and the other findings also should dictate the watch protocol.
I think you are on the right steps with your diet, i think the cleaner we eat the better off we are. I am by no means where i should be and am still working to get to my goal weight. but weight loss and sugar do have a positive impact on many cancers that feed off of high sugar intake individuals. in the end, they have not shown that any particular diet will stop or slow progression.
I will say this to everyone, having MGUS diagnosed young is not an automatic meaning of progression to SMM or MM. BUT, our outcomes can possibly be better due to early detection and the newly FDA approved daratumumab and hyaluronidase-fihj for high risk SMM. which has shown to slow progression.
Connect
@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.