Is there anything to help stop or slow progression of MGUS?

Posted by amyboylan1 @amyboylan1, Oct 12 10:14pm

I am wondering if there is anything anyone is doing to stop or slow the progression of MGUS. I m recently diagnosed and have a lot to learn. My oncologist said there is nothing that can be done. Also could some of you share how long you have had MGUS. I am like I’m sure like all of you very concerned about my MGUS processing. Thank you.

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amyboylan1 | @amyboylan1 | Oct 23 11:32am

In reply to @1oldsoul "https://www.mgustherapy.com/post/survey-on-curcumin?utm_campaign=520f328f-07f9-43f6-ab9a-d88b6b84ccd3&utm_source=so&utm_medium=mail&cid=727d2595-0f0f-4603-b000-d3b01b7fc0c1 Here is another interesting link on a completed survey that y’all might find interesting/useful. I..." + (show)

Will read this article. Thank you so much!

1oldsoul | @1oldsoul | Oct 23 10:42am

In reply to @amyboylan1 "Thanks. I also have a ratio with my light chains and an elevated kappa cell score" + (show)

https://www.mgustherapy.com/post/survey-on-curcumin?utm_campaign=520f328f-07f9-43f6-ab9a-d88b6b84ccd3&utm_source=so&utm_medium=mail&cid=727d2595-0f0f-4603-b000-d3b01b7fc0c1
Here is another interesting link on a completed survey that y’all might find interesting/useful. I haven’t done any research on this doctor as she lives in another country.

terry1976 | @terry1976 | Oct 23 10:21am

I have been doing all the reading and research for my spouse, diagnosed in 2019, by his astute PCP, just before Covid and slow to get to see a heme-onc for further eval. 6 months monitoring by blood work. Nothing on imaging in 2019 and it has not been repeated. I could not see heme-onc with him and once he heard cancer his brain did not absorb much of, if any, of the rest of the conversation. Patient education was not offered then or since. He cannot wrap his head around the fact that his will likely never progress. In his head he has cancer.

His primary symptom was peripheral neuropathy and as a very active athletic guy with other health issues, that was for him a last straw moment. He's obstinate about disregarding dietary changes, so I can only encourage--outside my circle of control. The PN in MGUS seems to be paraproteinemia--driven by accumulation of excess proteins (the antibodies) on the myelin sheath of the nerves, as I understand it. Poorly understood in the neurology community at large. The typical pharma--pre-gabalin, gabapentin, lyrica--are poorly tolerated by him and many others, so not worth the brain fog/disorientation/loss of balance, to pursue those
Stay away from B6--check your supplements that you are not exceeding dose--should all be achieved by food choices, not supplements--it is similarly a cause of PN in those who have not had other underlying factors.
He has become more and more sedentary over the intervening years, suffered bouts of gout/inflammation, that I suspect are separate from the MGUS but pile on to his symptoms and thus add to his depression.
Finding new hobbies has been something he's only just started to discuss openly, to move on from his funk. He sees a MH specialist but irregularly. His depression and anxiety can ripple out and make our relationship struggle in real life. So as his support person I have to be certain I am getting MH support. Being open and honest with your real life people is important. I hope you have that kind of ongoing support

amyboylan1 | @amyboylan1 | Oct 20 8:57pm

We are here for you. I feel alone too. Are you saying that you’ve had MGUS for 12 years and it hasn’t progressed to blood cancer? That’s good to hear. I’m sorry for the other health issues you’re dealing with.

sussu | @sussu | Oct 20 1:46pm

My MGUS founded over 12 years ago. I'm 54 years old now. They haven't got any treatment or advices, only blood tests once a year and I can only hope that the results are as bad as every other year. When I was working at the school where were mold (I'm sick from mold since 1980), the IgA get higher. But here in Finland nobody knows anything about MGUS or how I quickly I'll got infected by viruses, COVID or adeno or so. I don't even remember, when I felt myself healthy. I think I have long COVID, but here in Finland they don't even notice that either. So lonely with my problems.

lorkish | @lorkish | Oct 20 8:18am

I was diagnosed with MGUS in 2022. I had a M spike in my bloodwork. I had a bone marrow biopsy which evidenced a gene mutation MYD88 which then led to 2023 diagnosis of Waldenstrom’s Macroglobulinemia, a rare non-Hodgkins blood cancer. I am asymptomatic and age 73. I get bloodwork now every six months “watch and wait” scenario. I feel fortunate knowing all this but I do live a “normal” life knowing my protein levels change with every blood draw.

1oldsoul | @1oldsoul | Oct 19 9:22pm

In reply to @gweiman "Great news, and congratulations on your progress. What is MSK. Where can I learn more about..." + (show)

https://www.mskcc.org/news/diets-for-mgus-smoldering-myeloma-and-multiple-myeloma-q-with-msk-cancer-and-nutrition-experts
Here is another link for you. Hope it helps!

1oldsoul | @1oldsoul | Oct 19 8:01pm

In reply to @gweiman "Great news, and congratulations on your progress. What is MSK. Where can I learn more about..." + (show)

https://www.mskcc.org/cancer-care/clinical-trials/22-175
Here is a link to the trials altho it doesn’t give much info about the diet itself.
Congratulations to @ajbonett !
That is amazing. If you have a diet link or info you can share with the forum and which supplements you took (algae omega 3 and Curcumin?) we would appreciate it. I understand that some participants were provided the meals so you may not have a diet list. Keep us posted!

amyboylan1 | @amyboylan1 | Oct 19 7:38pm

In reply to @ajbonett "I was diagnosed with MGUS about 2 1/2 years ago and have now progressed to Smouldering..." + (show)

@ajbonett

I was diagnosed with MGUS about 2 1/2 years ago and have now progressed to Smouldering Myeloma. I joined a medical study out of MSK called a nutrivention study. Basically, they are looking to see if they can stop the progression of MGUS and Smouldering Myeloma through using a whole-foods, plant-based diet. I started the diet at the beginning of August and by the end of the month my M-Spike and light-chain ratio had dropped by more than half. I am now almost 3 months in and will have new labs drawn next week. I can't wait to see if they have dropped even further. I have also had a big drop in my inflammation which has helped my energy levels and lost 23+ lbs as of this morning. I feel like a new person. My husband is doing it with me and his cholesterol has dropped from borderline to perfect levels and he has lost 15 lbs.

Starting the diet wasn't as tough as we thought it would be. It's the elimination of dairy that is the hardest for us. But we have done a lot of research, gathered some fun recipes, and look at it as an adventure. We are learning to cook without oils, and we use mostly mushrooms and beans instead of tofu or "vegan meats." I forgot to mention that I limit my "added sugars" to less than 5 grams per day, and some days have no added sugars. Limiting the sugars is very important because cancer often uses them as "food" to grow.

I will also tell you that while my "study hematologist" and endocrinologist were thrilled with my results in such a short time, my regular hematologist was not. Earlier this week was the first time he saw my study results. He actually seemed a bit annoyed that I was going this route and feeling great. He kept asking if I was hurting anywhere and downplayed my test results even though they were there in black in white. I was very disappointed in him not acknowledging that I was doing better without any medical intervention.

So, to answer the question of both you and the OP... YES! There is something you can do. You will need to set your mind to it, but it is so much better than waiting and doing nothing, and then taking harsh drugs in a battle that you could possibly have avoided. I wish you well whatever you choose to do. Feel free to reach out privately if you want more information.

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This is so positive. Thank you. Would you be willing to share some of your recipes or recommend how I might find some. I really want to try this diet. I feel like I have no control and am wondering how I might be able to help myself. I am really scared of the progression. Thanks so much.

gweiman | @gweiman | Oct 19 7:53am

Great news, and congratulations on your progress. What is MSK. Where can I learn more about the plant based whole food diet?

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