Hi Dan,
I don't know. Jury is out in my mind whether the Curcumin is the reason why I am having a good response on low dose (20mg) Sprycel. But I can tell you that I am not wanting to test it by going off Curcumin and see what happens.
Dr. Aggarwal (Curcumin guru at M.D. Anderson) sure believes it is the Curcumin augmenting the Sprycel and encourages me to "keep it up". Dr. Cortes is non-committal. But I certainly have his curiosity.
What I did is research the heck out of this disease (CML) including reading the research papers and re-freshing my biochemistry and blood gentics. Then I read all of Trey's excellent research summary's and links he posted for this forum to gain perspective and background information sufficient to ask the best questions I could of my first Oncologist. It was at that time I felt I needed to visit with a top expert in the field to learn the latest thinking and to take charge of my own care. My first Oncologist did not know more than Trey does regarding CML. Dr. Cortes knows more than Trey does on CML - so he was the one I selected.
Along the way, I discovered Curcumin's effect with Dasatinib (Sprycel) on colon cancer and learned that the two chemicals together would not be harmful to me when taken together:
http://www.ncbi.nlm....les/PMC3162943/
http://www.researchg...cells?jtp=false
So I decided to be my own guinea pig and try the combination myself. At first I was taking 70mg. Sprycel as per Dr. Cortes' initial prescription after he took me off Gleevec as well as taking Curcumin and I went into an immediate myelosuppression that was severe (two weeks was all it took to crater my cell counts - horrible mouth sores and bad feeling all around). For all I know, the Curcumin enhanced the 70mg. Sprycel tremendously that led to the severe suppression. I stopped Sprycel at Dr. Cortes request but continued taking Curcumin. It was interesting that Dr. Cortes did NOT want to have me receive stim shots (Neupogen). He just wanted time to work to recover my counts. My counts hardly improved over several months. Dr. Cortes thought I should recover my counts in a few weeks. He told me my recovery was similar to stem cell transplant rates. I believe it was the Curcumin that was still working to attack CML cells and cause apoptosis, but my normal system was not responding very fast. Essentially my bone marrow was emptied of CML to some degree and my normal system has not responded yet. During this time of no sprycel, my PCR was steady, but did show a slight increase. I knew that Curcumin may be helping, but the Ph+ chrmosome was still busy. My peripfheral FISH level, however, went to zero which was a surprise.
After 3 months and cell counts recovered, I was re-started on 20mg. Sprycel (May 2011). I was surprised that Dr. Cortes did not start me at 40mg. He went straight to 20mg. He said he wanted to start me low, measure the myelosuppression and then track my CML burden and increase my Sprycel upward over time. He was pleased that my cell counts did not fall as much and I was able to stay on the drug. It was at this time that he felt my bone marrow was recovering with normal cells and re-populating. He did say that Sprycel does supress normal cells (c-kit), but that most people recover new pathways around it and get to near normal. When he saw my PCR response he elected to keep me at 20mg. and not increase it. He was more concerned about myelosuppression than response rate. He told me - and this was important to me - that because I was in cytogenetic remission (CCyR; Ph+ = zero), my prognosis was excellent regardless of PCR. All he cares about PCR is that it goes down or stays the same once it does go down. Very few of his patients are PCRu.
I have been able to stay on 20mg. Sprycel since (ANC > 1.3). During this time, my PCR started to drop significantly. Cytogenetics showed no Ph+ chromosome. And the rest you know - over the next eight months, my PCR went from 55% to where it is now: 0.06%. And most important to me is that I only see a doctor every 3 months. No more weekly CBC's.
I am not out of the woods yet - since there are still some cytogenetic abnormalities in my normal cells (Ph- cells) that they want to track at next BMB. Dr. Cortes said this was normal and comes and goes - but he also said, let's just get back in there to monitor at six months (which will be 3 months from now) - he wants confirmation.
And so, in summary - I will continue to take Curcumin - it is useful for other things as well (anti-inflammatory - good for the heart) and it's relatively low cost. Also - some day if I do get to PCRu - I will test that Curcumin can keep me undetectable.
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"