"Undetected" continues ... (Update)

Congrats Scuba!
That’s an accomplishment that must give you immense gratification.
How long were you on TKIs?
Sorry I joined this site in 2022.
I’m sure your threads can be searched for your TFR commencement.
TFR attempts should be tracked and documented as I think the knowledge can prove to be quite helpful in understanding how to manage TKIs.
You’re an inspiration and an important contributor to this site.

Kudos,
Joe

May, 2012 : Diagnosis. Accelerated phase near blast crisis. FISH = 100%
Prescribed 400 mg imatinib by a local Heme/oncologist (non-specialist)

CML symptoms began to alleviate after two weeks, but no change in FISH.

August, 2012: FISH=90%, Doctor wanted to increase my Imatinib dose. I did not want to increase dose and began my research journey on CML to find alternatives.

I sought out an expert in the field and began implementing a nutrition protocol at the same time based on my research with the idea of enhancing my immune system to create a bad blood environment for “cancer”. A special blood test revealed I needed.

• Vitamin D3 (test showed I was very deficient)
• Magnesium (for imatinib muscle cramping)

September 2012: Switched doctors to M.D. Anderson specialist.
He prescribed 70 mg dasatinib. He told me 100 mg is too much drug.

After 7 days dasatinib crashed my white cell count. Neutrophils < 700 cells/microliter. Developed intense headaches which faded over time.

Treatment had to be suspended for 3 weeks. FISH was at 90% leukemic blast cells dropping, neutrophils recovering. FISH fell to 80% after 3 weeks.

Treatment resumed at 20 mg dasatinib based on Dr. Cortes research.

After 7 days dasatinib crashed my white cell count again. Neutrophils fell to <200 (very dangerous. I was told go to the emergency room if I develop any fever whatsoever.)

Began a curcumin regimen (8 grams per day). Added vitamin C supplementation and vitamin K2.
Weekly CBC (blood counts) testing showed very slow rise of Neutrophils this time around. I stayed off dasatinib for 3 months. FISH dropped to ~50% ! Blast cells disappeared (0%) even though I was off drug.

My doctor was impressed that my CML did not get worse while off drug AND that the blast crisis threat was eliminated.
I added Selenium supplementation (200 mcg per day) and AHCC (Shittake mushrooms) around this time.

Restarted dasatinib (20 mg) once neutrophils rose above 1,000.
Neutrophils crashed again, but not as bad to 500 cells/microliter. Stopped dasatinib.

FISH plummeted during this time to 0. PCR = 1.0%.
Neutrophils recovered during the next 4 weeks to over 1,000.

Restarted 20 mg dasatinib for the third time. Neutrophils fell again, but stayed above the minimum allowing me to stay on drug.

Next 3 month PCR fell to 0.1%.
Over the next 12 months, my PCR continued to fall to 0.01% and stayed there for another 12 months. After this time, PCR fell to < 0.01% and remained at that level for two or so years.

I decided to test my first TFR attempt even though I was not following TFR protocol. I stopped drug on my own and my PCR stayed < 0.01% for 3 months. I was encouraged, but then my PCR started to rise and fall from 0.05% to as high as 0.09% over the next nine months. Trend was upward albeit slowly. I resumed 20 mg dasatinib and PCR fell immediately after 3 months to <0.01%.

PCR stubbornly was still "<0.01%" for the longest time. This is when I learned about 3 day fasting, autophagy impact and Leukemic stem cell "stimulation". If Leukemic stem cells are not dividing, they are not dying (either by drug or immune attack). They are quiescent. Fasting, is theorized, stimulates these cells to divide thereby exposing them to both immune attack and or TKI attack upon re-feeding. I decided to try fasting to re-energize my immune system.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7474734/

After my fasting process, a subsequent PCR became undetected. I continued taking 20 mg dasatinib for another 36 months while remaining undetected following TFR protocol this time. After 3 years of "undetected" on drug. I stopped dasatinib and have remained undetected since that time (over 4 years) to present time. I also moved from 3 month testing to six month testing which I remain on currently.

I credit my success (so far) to several key ideas:

Focus on nutrition to down regulate biochemical pathways favoring CML (mTor & nfKB) (Curcumin).
Biochemistry of cancers and cell pathways:
https://pubmed.ncbi.nlm.nih.gov/33452624/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3638063/

Focus on nutrition to enhance immune response to cancer (vitamin D3).
https://www.jbc.org/article/S0021-9258(20)52601-X/fulltext

Focus on nutrition to up regulate biochemical pathways favoring immune response to cancer (B cells very important) (selenium, AHCC (shitake mushrooms).
https://www.mdanderson.org/cancerwise/can-medicinal-mushrooms-help-durin...

Focus on nutrition favoring a keto oriented diet (low carb).

I continue to take:

Vitamin D3 (7500 IU’s per day on average. None when in the sun. I no longer use sun screen). It is very important to test to verify you are in the "zone". Never take more than 10,000 IU's per day.
Magnesium (400 mg per day/ split morning evening)
Curcumin (2 grams per day; down from 8 grams earlier)
Selenium (as Brazil nuts or supplements, never at the same time) (200 mcg)
Vitamin K2 (at Japanese Natto or supplement ~500 mcg per day)
Shiitake mushrooms (most days with veggies)
Vitamin C (500 mg per day) along with citrus
Quercetin (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6225654/)

And I fast regularly (one day per week and 3 days at at time 4 times per year)
Ketosis is your friend if you are not diabetic.