03/02/18 Lori Christner: Just wondering whatHere is my story...I'll try to make it short. I have chronic myelomonocytic leukemia (CMML) caused by TET2 mutation. Studys have been done with high doses of Vitamin C and mice injected with the mutation. Positive results have been found (i'd say great results!). Here is the government link to the results of some of these studies :
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3798917/
So of course I have contacted the hospital and doctor performing the trial. They said I don't qualify because I live in Nebraska. That's what the receptionist told me anyhow....WTH! So I am on a quest to do my own "trial". I contacted different doctors and one that is not doing the trial but was involved in the studies on mice gave me this information on how the trial is going to be administered: "patients will be started on Vitamin C continuous intravenous infusion through
a pump for 5 consecutive days and the pump will be exchanged every 24 hours and the cycle afterwards will be repeated every 4 weeks. Vitamin C will be available as 50 gm vials at a concentration of 500 mg/ml.
There should be no preservatives in the vitamin C product"
I have been researching the best way to keep my Vitamin C levels as high as I can get them or should say maintain them. I do know they are going to do blood test every week for the 4 weeks between cycles. The whole thing will last 4 months. Anyway...sorry I said short...and lied....but that what has led me to your group. If the study works out...how in the hell are they going to administer something like this without hooking up all us leukemia patients for weeks at a time? Just saying...you guys seem to be already working on this.
I started going to closest place...140 miles roundtrip...for IV. My last dose was 25g next it will be 37.5g and on up to 50g once a week. I wish I could do twice a week but they charge me an office call every trip plus the vitamin C. Not covered at all by my insurance and the cost of gas...not going to happen. I want to do my own injections...anyone do this? Appreciate any thoughts!