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

@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

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.

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

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).

Thanks again.have good day

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.

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

Its good to ramp up aerobic/resistance gradually, take a day off to recharge, and drink enough water/salts (Gatorade, other electrolytes) in case you are having dehydration-associated nausea. If I over-exercise, such as an 80 mi bike ride, I am mostly wiped out, but no nausea. My energy levels last year were lower, partly because I have hypthyroidism and my thyroid meds were too low (took some nagging for the doctor to increase my Synthroid). It would be handy for your dietician/nutritionist for you to list your diet. It takes some weeks or months of working out to "get in shape" such that exercise doesn't make one feel drained. Exercising is great for keeping flexible and strong, especially as we age (I'm 70).

Kay…thanks again for your feedback. Most appreciated..according to what I’ve read so far, since I’m on eliquis a blood thinner..supplements like turmeric and garlic are not recommended as they serve the same purpose or have the same result. But I do have another question ..re diet..I have scheduled appointment with dietician/nutrition next week. Have cut back on sweets, bread, processed food…and have amped up my exercise appreciably…yesterday I felt pretty pretty normal, but most days I feel low energy and almost nauseated..not sure if and when this feeling goes away with diet change and exercise over longer period. Thanks again. Stay well
Bob

Diet is mostly for general health; I haven't found anything definitive on diet influencing MGUS progression. Pasta and hot peppers are fine. In general, a FODMAP or Mediterranean type diet, low in sugars, drink enough water, and get enough exercise is what doctors mention. Some people with MGUS have gone vegetarian, in case that helps them. I have had celiac disease for 15 years so exclude anything with gluten. I take Qunol turmeric with curcumin supplements for my "in case that helps" with MGUS. Not much human research on that yet (mice feel better tho). Check with a doctor/pharmacist before major changes if you are on meds. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9301229/