Wow, that is quite a milestone especially considering the complicated fine tuning you have had to endure to get there. Congratulations!!
I have a working theory that many in the general population have CML low level and don't know it. The mechanism for gene translocation (specifically the 9;22 one that creates the bcr-abl oncogene) is biochemically easy and must be occurring like crazy every day. In people without CML "disease", their bodies simply eradicate the aberrant cells - but - and this is my theory: eradication doesn't have to be total in order for the body to survive normally.
The question I want to answer is can I live with low level residual disease (undetected or not) without the aid of a TKI? I want to test that idea. There are numerous cases of CML patients going off their TKI (for various other reasons) and finding that their PCR levels did not change. They're living with CML without having to take a TKI.
Dr. Cortes told me that if sensitivity of PCR test were increased, many more people would test positive for bcr-abl in the general population. Many of the people who are "undetected" and no longer are taking their TKI (STIM trial) would find that they are no longer undetected. Now that's interesting - because Trey believes that one stem cell becoming bcr-abl leads to CML. I don't believe that. I want to test whether eradication is necessary for functional cure in my case. Obviously there is something in our CML bodies that enables bcr-abl to expand and lead to disease. We've lost the ability to defend against bcr-abl cells. Can the defense be re-acquired? I will test that.
Also - and this is where Curcumin, Vitamin D, and nutrition comes in. I believe nutrition can play a big role in assisting the body to manage bcr-abl either by search and destroy, improving T-cell response or down regulating the cells. Curcumin is a down regulator tool. It slows the cell division of bcr-abl which leads to necrosis. It's not a cure, but then again what is a cure? We don't have one. We have tools to manage the disease (TKI's), but I prefer a tool that is not toxic to the body.
One final point - when I started my journey on improving general health since CML diagnosis, I had a vitamin D check done. My levels were 17 ng/ml. Rickets territory. I love to Scuba dive, but I wear wet suits - so sun exposure was very low for me even though I am in the tropical sun. I have probably been low level vitamin D for many many years and didn't know it. Maybe being vitamin D deficient helped contribute to my losing the ability to defend against bcr-abl? I started a year ago to increase my vitmain D levels markedly using vitamin D3 supplements. I am now above 50 ng/ml on my way to around 70 ng/ml. Vitamin D is very important for immune health (http://www.ncbi.nlm....les/PMC3166406/). I wouldn't be surprised if substantially increasing my vitamin D level is a contributing reason why I am finally seeing zero's in my PCR report.
Also - Curcumin is not for everyone. But I do take it in 8 gram quantities every day for several years. I believe that Curcumin was the enabler for me to be on a small amount of Sprycel and have such a great response. But as Trey wrote here many times - the test would be for me to go off Curcumin and see if my PCR level goes up. I am going to stop Sprycel instead and see if my PCR stays the same.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"