I am so fascinated by your results Scuba Michael....and the flexible direction and collaboration from your onc team....I'm considering moving my care to MDA...but have reservations...the driving distance being one of them.
Just good to know that someone is willing to test the boundaries of the routine protocol to discover or chart possible new treatment pathways. We all benefit from your experience.....works or doesn't. I wish we could also know what it was that caused these translocations in the first place....so we could remove that exposure from the mix and hold that factor constant....
For myself, I took a personal 3 week Sprycel holiday (to address other medical issues) and was pleased to experience life sans TKI..the biggest bonus of course was the restoration of normal energy levels. I was relieved that My levels immediately following this short hiatus were right at 0.10 . Back on the melds now...I am hopeful they will continue to decline....They have been skirting the 0.1 line for about 9 months now. My onc said he'd still like to see me on the 100 mg dose and says I should plan on taking these higher levels for at least four more years...I am so impatient, can't seem to help it.
Maybe one day TKIs will be both the treatment of choice and the cure...Thanks again.
Many good thoughts headed your way. D
Translocations between chromosomes are very common - normal in fact. It's the nature of DNA and also why nature has many mechanisms in place to identify DNA breaks, repair them and/or cause the cells to die out. Most translocations are benign. When they do occur the cell cycle usually stops (forced senescence) and the cells die. But in some cases, onocgenes form. That is what happens when chromosome 9 and chromosome 22 translocate. They tend to translocate in a way that forms the oncogene bcr-abl. This is the culprit that codes proteins that turns on the Tyrosine Kinase pump and this TK production causes white cells to keep dividing and dividing and dividing - leading to disease we call CML.
Ionizing radiation can easily cause 9;22 translocations. After the nuclear bombs in Japan, CML cases in the affected regions rose dramatically in the immediate aftermath of the detonations. Cat-scans also provide a significant dose of ionizing radiations to our bodies as well. And no doubt this can cause 9;22 translocations.
Many Cat scan devices are not properly calibrated and in a later study many were shown to have unnecessarily high levels of radiation due to poor calibration practices.
It is my belief this is how I developed CML. About 5 years prior to diagnosis I had a series of cat-scans done (more than 5) on my hip area (the area that much of our blood is made). These scans were done in succession over a few months. I have no doubt, in my mind, this is what triggered my CML. I wish I had never had these cat scans (I could have avoided them, but didn't know.).
But, I also believe, that my immune system should have been able to detect the ionized induced translocation and take care of it. Many people have cat scans in the same area I had mine and do not develop CML. There is a reason for this no doubt.
Little known to me at the time, I was also very deficient in vitamin D (probably deficient for many many years prior to the cat scans) because I worked indoors, did not consume vitamin D fortified dairy and otherwise avoided the sun (or in wet suits when in the sun). So when the translocation occurred - I had little defense. My diet was also - how to say this - geared to the fun side. My weight was fine because I exercised a lot - but the calories I was consuming were fun calories not nutritious calories. I was depriving my body of the tools it needed to fix and repair damaged DNA. Little phytonutrients, little vitamin D, few veggies - I was a guy having fun in my youth. I still have fun - just not in dark places anymore.
We are exposed to ionizing radiation often in our daily lives (as well as chemicals that are carcinogenic). This is why vitamin D is manufactured by our skin. It is also interesting to note that vitamin D synthesis decreases as our skin darkens (melanin/tanning). Our skin is most vulnerable to DNA damage prior to darkening. This damage no doubt creates cancer cells. The ramped up vitamin D production is used by the cells to repair the damage, cause new cancer cells to die and otherwise restore the body. Vitamin is natures response to radiation damage. I found that interesting.
This is the theory I am now testing. For whatever reason - it is likely the radiation I received from cat scans - caused my bone marrow to create the 9;22 Philadelphia chromosome. My body was unable to deal with it because of a vitamin D deprived immune system. CML was able to expand and grow unchecked for years. Finally - I felt it in May 2010 when I had to see a doctor for the symptoms. I had borderline accelerated blasts, my bone marrow was a mess, I was dying for sure. And my wife cried like I never have seen her. I started on a TKI and was able to recover. It is my belief that the TKI's were the club necessary to get the CML population back in control. Thank God for TKI's. TKI's are able to beat back CML to very low levels - like when CML was first created. Back to a level where - if the body had the tools - the body could do the job. That is my theory: we don't necessarily need to eradicate CML to control it naturally - we just need to get it beaten down sufficiently well that the body (with the tools) can take over.
I take lots of Curcumin based on the evidence that Curcumin is a cancer inhibitor. Not a cure - just a road block to the cancer expansion. Curcumin, I believe bought me time and also enabled me to need less TKI drug to achieve a great response. I avoided much of the side affects we read about in this forum. I continue to take Curcumin. And then i learned about vitamin D's role in the immune system - precisley in the part of our biology involving cancer cells, DNA repair and apoptosis - and translocation repair. When I discovered my vitamin D levels were near Rickets territory, I decided to supplement. I started to increase my vitamin D level to high therapeutic levels. It's tricky - but I test regularly now to keep it in that high normal zone. Not - normal normal - but HIGH normal - I seek to keep it around 70-80 ng/ml. I want my vitamin D receptors filled with vitamin D so my NK and T-cells can go after CML cells wherever they find them. I believe that by getting CML way down through the use of Sprycel - and getting my body's defenses way up - I can eradicate the disease naturally down the road. Nature needed help with the TKI to reduce tumor burden (otherwise my body is overwhelmed). Once reduced and with proper nutrition, I can restore and undo the ionizing damage done to me by the cat scans. This is my current thinking.
So far, I have been TKI free since February. My PCR levels are borderline "undetected" (no change statistically). In a few weeks I will go for another PCR and if this one is also no change - I will resume a 3 month PCR program sans TKI. If I can get to a year with no change, I will move to a six month PCR testing schedule. And if I can get to 5 years with no change. I will consider myself cured and end PCR testing.
Perhaps in this time frame, they will create a cure that eliminates the bcr-abl stem cell and create an immediate "cure". But for now, I have this theory and I need to check it out. If it doesn't work out - then I go back on Sprycel (low dose) and will conclude that other forces are at work to keep CML around. At least we have our TKI's. They are a blessing. I get to experiment because I can fall back on Sprycel if my experiment doesn't work.
I am determined to become TKI free permanently. I will not give up.
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"