Hi Ron,
I am fortunate to have gradually reduced medications throughout progression of my treatments from diagnosis to complete response. I am on 15 mg Revlimid maintenance for 3 years now.
I take vitamin B12,vitamin D, zinc, and Viactive vitamin D and calcium. I take Levothyroxin for thyroid as Revlimid was working against my thyroid. My treatment is Xgeva every 3 months for my bones.
I am currently IgA Kappa light chain MM and stable ,NOT minimum residual disease. I am in complete response for 3 years in a range above upper limit in kappa and lambda light chains, no significant changes. I exercise regularly weather permitting walking 2 1/2 miles with our dog, and twice per week at the YMCA . While my quality of life is good it is variable for neuropathy and some fatigue. I always follow my local oncologist and MM Specialists recommendations. I am going on 5 years with MM without an ASCT to date. Everything is contingent upon our type and severity of Multiile Multiple Myeloma which can vary by individuals.
No circumin, no gabepentin, no tumeric, no berberine. I strive to follow the old scouts pledge “keep it simple and make it fun.” Take care and keep in touch.🙏

Hi Mepapermaker1 - What does Complete Response mean, do you have some cells per million. If so, by what testing method and how many?

There’s hundreds of Case Studies regarding the efficacy of Curcumin in support of Cancer. Both to make the treatment more effective and to help kill cancer.

Have you ever spoken with another Onc for their opinion about Supplements with treatment?

I’ve thoroughly documented my events with MM at my Story. Originally, 2 years ago when recovering from my initial Diag of 80% bad plasma and recently with my bone lesion event.

Both resulted in extremely fast results to MRD 10 -6, Negative and no SCT. Two years ago, it was with 8 grams C3 Curcumin daily only. This go around, about 5 months ago, was with a mountain of Supplements, getting to No MSpike in 6 weeks (all documented at my Story @A MyMyelomaTeam Member).

2 years ago, my Onc was amazed at the speed of my recovery. This time, 4 Oncs / Specialists involved are completely Baffled - admitting it’s beyond anything they’ve seen or expected was possible.

I’m convinced it’s the Supplement and the Plant Based Diet. My research caused me to assemble a specific list of items. I needed the Revlimid and Dex but it’s the Supplements, Diet and exercise that super-charged my recovery.

My Onc recently introduced me to a new young Onc, while at his office for a follow up. My Onc of over 30 years, says to him “Listen to him” and leaves us to talk for over an hour. Then they talk privately for about 15 minutes and both return for the three of us to talk for at least another half hour.

Most people are lucky to get 15 minutes with their Onc. The three of use spent 2 hours discussing my research and results.

My Onc totally agrees with my Plan - I’m getting a new blood sample clonoSEQ test next week and If it’s 10 -6 Negative, then we’ll continue with Monthly Labs, Quarterly clonoSEQ Tests and Monitoring Only, unless I progress.

If I ever progress, due to the blood sample clonoSEQ testing, we’ll see it months before I have an MSpike and restart a short course of Revlimid and Dex (2 to 3 months max) and do Full Weekly Labs during that timeframe, and Then revert to Monitoring once my Labs revert back to normal.

I’m less than two months off of Revlimid and my Labs are excellent again. Completely Normal CBCs and a Normal K/L Ratio and values. 18 months ago, when I stopped treatment Meds, it took a year for my Labs to get close to Normal. During that time, I had 3 bad upper respiratory infections. This time I can tell I’m not at risk of getting a cold or flu.

A month ago I met with my GP, showed her my Report and discussed my then low Ig Levels. I expressed concern about getting upper respiratory infections. She looked at my Supplements List and said - “Don’t worry, I’ll do fine, these Supplements will boost my immune response very well.”

If I Know Anything at All, it’s the Supplements, Diet and Exercise, that are Responsible.

Mentioned Users

A MyMyelo...

Thanks to all for your replies. Pre mm and now I've been full vegan which helped. Pre treatment I also took 15 or so supplements most with some direct connection to staving off mm, or cancer. That lasted 5 years with no injuries or suffering. Now in treatment it's only spices like ginger, garlic, parsley, flax seed oil and a few teas like green tea and roobios and a few supplements like curcumin, berberine, quercetin, and Vit D. The books Beating Cancer with Nutrition by Patrick Quinlan and Chris Beat Cancer have provided some good guidance for specific veggies, spices and much more to aid the efforts. Also, the gym sauna followed by a cold shower feels very cleansing. M spike remains low but could go lower, but no lesions or injuries or the like.

Ron, I think you should check with your medical team about safety and drug interactions. All the best🤗

I also am taking 15mg Remlivid along with 500mg calcium, Multivitamin and black elderberry with vit c and zinc. I drink turemic and cúrcuma tea. The only problem which bothers me is the neuropathy in my feet. Since I am still working sitting all day causes swelling in the ankles. I have one compressed vertebra midway of my back, but the lowr back also aches to the hips but causes me to not want to exercise. I try just doing water therapy weekly, which does help.
I am so glad to hear we are all progressing so thank the Lord daily.
Prayers to keep on keeping on.🙏🏾😁