MGUS diet: Any tips on food to enjoy or prevent progression?

Kay…just me again. I’m fascinated by your 80 mile bike ride.. I don’t want to keep repeating myself..but it’s been 2 weeks since my diagnosis..I guess I need to know how you’ve learned to cope mentally…as: 1. I think about it every day..2. Concerned about why I feel weak..low energy..and mentally stressed about it..I’ve heard/read that MGUS is asymptomatic …no symptoms..do you/did you have symptoms?? I have scheduled appointment with dietician next Thursday..to get a grasp on what I should and should not ear..I’ve cut back on sweets and boosted my exercise..just want to live a healthy life..your feedback is appreciated..thanks again for taking time out of your busy schedule…Bob

My 80 mi rides were before I got covid and long covid last year; now mostly 30 mi and less, plus weights, walking, woodturning, and other escapes. My MGUS is asymptomatic, and my kappa/lambda are now fairly high (damn), but other things can influence energy levels. A big one is grieving and the associated stress, sleeplessness, and not knowing what will be slapping you around next. Give yourself some time to grieve; most people with MGUS will not get MM, but the possibility is hard. It is good that you are proactive in addressing the MGUS. Elevated kappa/lambda levels can also be caused or at least increased by other things, such as inflammation (in my case celiac and colitis), kidney disease (check your kidney bloodwork), and who knows what else. Symptoms of fatigue, joint pain, or other can also be tied to other factors.

Thanks again.have good day

Check.out Mediterranean diet information as well as cutting out hidden sugars and sugar substitutes whether with the dietician or on your own. Having a healthy gut microbiome helps with everything; decrease all sources of inflammation (e.g.sugars, processed & ultra processed foods).

Will check Mediterranean…I know sugars and carbs don’t work in our favor..how long have you had MGUS??? Any symptoms ??
Bob

Husband is the one w MGUS, Plus his degenerative disc disease from. C2-T1 and worsening at T2. I spent 45 yrs doing medical research so while not my area of expertise I do.have the desire & energy to research, read medical.journsl articles, and I do the grocery shopping and 90% of the cooking. He is pretty stubborn about improving his diet
It's been a difficult adjustment. He was an avid snow skier, white water rafting, motorcycle riding then his back became an issue and he was medically retired from.his career in law enforcement about 5 years earlier than he had imagined. So he has depression and grief over what he's lost to add to his physical chronic back pain, and the PN discomfort. We are fortunate he purchased disability insurance (no union as a LEO) and I'm retired military so we have pretty stellar insurance. It's as much a mental health challenge/orientation for gratitude vs despair. It almost destroyed our 45+ yrs marriage and there are times we skate on thin ice. I try to stay as healthy as I can, but I too, at age 70, have my own health issues. Fortunately, I have a great PCP and a great therapist & sons & DILs who, while far away geographically, are huge emotional supports. They would do same for him, but he won't let anyone "in" except to unload his negativity on them.

@bigbob5461 Just as there are so many ways to handle your diet, there are the stories you will hear here on Connect.

I was diagnosed with a very rare kidney disease in 2015, and had been following a sound renal diet for many years before that. In 2017 came MGUS, in 2018 it advanced into Smoldering Myeloma, and in 2019 advanced again to active Multiple Myeloma. Yep, I am an overachiever, definitely!

My renal diet of reduced sodium, calcium, potassium, phosphorous, red meat, dairy foods seem to have stood me in good graces with this foray into blood cancer. Keeping active as much as you feel like it, doing things that appeal to you to keep you interested, as @kayabbott has mentioned, all sleeves in together to keep your spirits and body in good form.

Please let us know what the dietician has to say!
Ginger

Hello, I’ve been diagnosed with mgus since 2017 and my numbers are steadily increasing. Latest labs said my m-spike numbers was at .6 which is .2 points higher than a year ago. Has anyone heard of stem cell therapy as a means of curbing increasing numbers?

Hi Terry,
I’m retired LEO also with smoldering multiple myeloma. I intentionally retired at 55 as we were allowed to go then (who wants an old cop?). We have our unique set of problems, don’t we? But if you’ve been married 45 years, kudos to you! I know who the strong one is in the family!
But MGUS and the progression/fear of progression is not for the faint of heart. ❤️ I’m certain I had undiagnosed MGUS the last five years of my career, I was tired a lot, more than the adrenaline dump fatigue. I truly believe it adds to the struggle, we have abnormal paraproteins filling up our bone marrow, contributing to peripheral neuropathy, and generally stealing our oomph. My MM specialist who ordered my bmb which confirmed I had SMM, not MGUS as the hematologist guessed, said fatigue is common with those who have SMM. I believe it contributes to MGUS fatigue as well altho there’s not proof of this scientifically, just empirically. I’m also a RN, so I’ve done a lot of reading of medical studies, as I’ve learned a lot from groups like this.

I don’t know what to tell you. We are strange, stubborn creatures, us LEOs. Do take care of yourself, if you have spare energy then feed him nutritiously, exercise with him, encourage him to lean on his faith or practice meditation, or similar. Go to his medical appointments so you know what the doctor really said. We underplay everything, as you know. We deny until the last breath in many cases but some of us learn it’s good to get the specific labs done religiously, so we can at least control any progression by catching it early and getting an early jump on treatment.

All the best to you, St Terry!

Amber,
You mentioned peripheral neuropathy related with SMM. An tiredness.
I will mention these to oncologist, I kept wondering ‘ why’ these two things are happening
Tuesday when I talk with her I will ask her about these two symptoms.
She wants to start light chemo soon to slow down my numbers from increasing.
Appreciate you sharing what you have learned in a clear and understandable way
Thank you