Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
If your M spike is at 3 and you have neuropathy, you need to see a myeloma specialist at a center that sees a high volume of patients.
I have had MGUS since 2002. The M spike has varied from 1.1 to 1.7 and back down again. I think my hydration at the point of the blood draw may be responsible for the variation.
I also had a fractured hip that was replaced in January 2021. Surgery was done under regional anesthetic not general anesthesia. My free light chains went up and then came back down again. The M spike did not change. However, when I had a reverse shoulder replacement surgery in 2023 under a half hour of general anesthesia, my free light chains soared. They have decreased but not to the level they were before I had the surgery. I do not understand why as I had no problems with the surgery and feel great now.
My previous (now retired) hematologist wanted my bloods drawn every three months. The current one in the same practice thinks yearly is fine -- and every six months if I choose. I do choose every six months.
FWIW, I agree with Patty: curcumin may be of some help, but there is insufficient data to say so with any degree of confidence. Unlikely to be harmful in the dosage to which Patty refers (but always check with your doctor first anyway). For the complete story, perhaps presented with more optimism than the current data warrants:
https://www.cancer.gov/about-cancer/treatment/cam/hp/curcumin-pdq#
I have been taking 1-2 grams lately. Doesn’t seem to have any downsides so I am going to keep taking that amount. My doctor kind of shrugged too.
I have read those studies too which are promising but not conclusive. And some people seem to respond more than others. Time will tell.
@dcuste
I think there's a lot of interest in this. Leslie and I were just discussing it so I won't be repetitious, but I would add that I think given what some of the others are taking, my curcumin dose is fairly modest. I've had two rounds of blood analysis since I started. I hope the numbers continue to go down. If I plateau I might consider upping the dosage if my docs are on board.
I have another round of bloodwork and scans in May and we'll see how it goes.
@leslie2121
I am taking QUNOL ultra strength turmeric curcumin complex. I take 1000 MG twice a day.
My PCP hooked me up with the PharmD associated with her clinic and we went through all my medication's and talked about dosage. I have no Gastro issues with the dosage.
I think physicians need to have more data before they jump on this bandwagon. The studies that I have found related to curcumin have been very small samples. This one that I'm posting below is 25 patients. So the information is anecdotal and thus physicians consider it unreliable. I'm good with that. I don't think that the risk associated with taking curcumin (for me anyway) is prohibitive.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10966979/
Knowing that you had a positive result is real encouraging. I have a real trouble following the watchful waiting program.
My M-protein and IgM values have been doubling every 6 months and I went through the same reaction as you and also decided to give Curcumin a try. My oncologist had the same reaction as yours. I interpreted her reaction as she was just a going by the book type person and would never encourage deviation from the standard protocol most likely due to liability concerns. Can't really blame her for that.
I had read about an ongoing trial that was using 8 grams/day but couldn't find out any other specifics. So for the last few months I slowly ramped up using the C3 complex formula. I'm currently up to about 6 grams/day of 95% curcuminoids per day.
Can you tell me more details about your situation regarding blood tests results and curcumin/turmeric protocol?
How much do you take, Patty? And brand?
I was taking 4 gms daily of Thorne curcumin and my FLCs dropped about 25%.
I got tired of taking 8 capsules a day and cut back to 1 gm/day. They went back up. So considering resuming the higher dose. The m-spike remains low though, regardless. Thanks, and glad you’re doing well.
@harty
When you refer to MUGUS do you mean MGUS or is that some variation? I am still learning about MGUS.
Thanks. I hope the turmeric/Curcumin will help make a difference. Take care.
There are 2 issues I would comment on.
First the testing for progression. Several comments have been made that I agree with. However, there are other modalities that have not been mentioned. If you are thinking of getting a 2nd opinion re testing, I would rec a high level cancer center like Mayos that would have access to all testing pertinent for MUGUS.
The second issue has to do with treatment. Again, I would agree with the comments that have been made re treatment. Certainly, you would not want potentially toxic treatment for a nonmalignant condition. On the other hand, there have been homeopathic treatments that have slowed the progression of MUGUS without any toxicity. An example is curcmin. If you are considering one of these, it would be important to discuss it with your oncologist.