I have been asked in private messages why I feel I can succeed stopping my treatment after only a few months MMR/CMR (i.e. PCRU). There is debate here on this forum and also in the medical research community on what the criteria really needs to be for cessation success with little or no risk. There is also debate on whether complete eradication of Leukemic stem cells is absolutely necessary for cessation success .... or "cure".
I believe that eradication of all leukemic stem cells may not be necessary. The scientific community is starting to come around to that idea. Creation of translocation and CML cells probably happens all of the time naturally. But only a subset of us gets full blown CML. The question is why?
What I write below is my thinking. No one should attempt what I am doing without full consultation with their doctor (who they trust and is expert in their own right). Most Oncologists will never endorse what I am doing. And for the normal good reasons. My doctor is willing to collaborate with me and oversee this experiment. The risk is mine alone. And since I don't fear CML anymore, I am willing to try and see if I can speed things up. I am impatient to get rid of CML or more accurately - get rid of taking a TKI. After 5 years, it needs to go away.
My reason for trying and believing I can succeed at stopping is that I am not relying on a TKI alone for CML killing. I have added high dose Curcumin to my diet as an additional nutritional support and also elevated my very low vitamin D status to high normal. Dr. Aggarwal of M.D. Anderson told me that 8 grams of 95% Curcuminoids is the minimum in order to get enough absorption and be therapeutic at getting at these signalling pathways. Curcumin should not be taken by anyone who is on blood thinners. Curcumin is what makes Turmeric root yellow and used in Curry spice cooking. It's been eaten by people for thousands of years.
Why should this enable me to now stop Sprycel and continue with just a focussed nutrition approach? It's about the Hedgehog pathway, the Nf-Kb (nuclear factor kappaB)
pathway and the Wnt cell signaling pathways that CML cells need in order to proliferate and dominate our normal blood system. Interfering and downregulating these pathways has been proven to cause CML cells (and other cancer cells by the way) to go into apoptosis, but not normal cells. Below are some research articles from reputable sources () that summarize Curcumin's now known impact on these critical pathways. Is it proven in terms of CML? No. Is it a cure - No. But it seems nothing is ever proven in Cancer research.
Importance of Hedgehog signalling in overcoming drug resistance:
Curcumin's impact on Hedgehog signalling:
Importance of Nf-kB signalling:
Curcumin's impact on Nf-Kb signalling:
It is my hope that Curcumin is messing with CML in a big way and buying me time. It is my hope that getting my immune system shaped up (cd4+ & cd8+ cells) by getting vitamin D back to normal it will enable my immune system to do its job. That's the theory anyway.
So far I am TKI free. Anemia is going away. And my skin looks great. And no arthritis anymore. So even if my plan doesn't work (and I have to go back on Sprycel) at least I'll look good.
I don't recommend my approach to anyone. I am just sharing what I am doing, why I believe it can work and then sharing the results. My motivation is to get rid of the side effects (in my case anemia) brought on by Sprycel and to avoid long term use of a toxic man-made chemical (i.e. Sprycel) that may have long term health consequences in its own right. So far I am in month 3 of no Sprycel and no progression. Cross your fingers.