Is there anything to help stop or slow progression of MGUS?
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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@anneschanck
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
That will give you a bit of information about MGUS. Typically, if you are tested and an M paraprotein is detected in your blood, you are referred to a specialist who will monitor your health. MGUS is not cancer, but there is a small risk of the condition progressing to other blood cancers including multiple myeloma. Many have had MGUS quite uneventfully for decades.
It’s important that you advocate for comprehensive healthcare and ensure that you get a referral to a hematologist/oncologist who is a specialist in treating blood cancers. You don’t have blood cancer with MGUS, but must be monitored.
Can you speak with your physician about this and will you let me know how this works out for you?
@dcuste
I spoke to my hem/onc doc about turmeric and he sort of rolled his eyes, citing lack of supporting data. Undaunted, I read that some were having success rolling the turmeric dice and I decided to try it.
I checked with my PCP because I was worried about unanticipated consequences with an interaction with other drugs I’m taking. She consulted pharmacy who went through them with me and finding no counter indications, I opted for a daily dose of 1000 mg of Curcumin. My kappa values went from 113.8 to 88.8.
I’ll take it. My lambda went down a minuscule bit. My ratio went from 5.69 to 4.49.
I don’t know that any of this is attributable to the curcumin I get semi annual bloodwork done again this coming Monday. We’ll see if the reduction in values was an anomaly. It sure wasn’t adherence to good diet and exercise as I have not been dedicated to either recently, but I am by nature and empiricist, and I’d like to see steady decline in these values consistently before I get too excited.
I had no Gastro issues whatsoever taking the curcumin. I tried taking turmeric with ginger and let’s just say I had to spend way too much time in the bathroom.
Thank you for sharing this information. Are you taking turmeric and how has this impacted your health?
Could you please let us know how your next blood tests go?
Thanks
I've been taking close to 2grams/day curcumin for about a month now. My LDH is now in the normal range so on Jan 2 I'll get MRIs of my lower spine and pelvis.
If the MRIs are normal, I'll probably keep doing what I've been doing. Then decide what next when I get the results of my April blood tests. The only turmeric I take is from the Curcumin supplements. There is at least one trial using curcumin for MGUS.
I'll be happy if my condition stabilizes. It's good to know some people are able to improve.
About 6 years ago I would meet with Canadian snow birds in the US. My understanding was they had insurance that paid for their out-of-country Healthcare. So they would get everything taken care of in the US. After a certain age the insurance prove was too high for them to travel down.
@amyboylan1
I sure will. I don’t look at my chart. I’d rather be in the room with my hem/onc doc so I’ll see him on 1.2. Will post.
Most all oncologist add the label hemotologist. I work with a “blood” pathologist. They are few and hard to find out of academic circles. My favorite is Dr Thomas Hirose at UCIrvine
Thanks
I don’t think my LDH was tested with the other MGUS tests can that be. What is the LDH? Glad yours is normal now.
I am very concerned too. I was diagnosed about 6 months ago.