Hi Everyone: I could not begin to tell you all the things I have been going through, but nothing to do with my CML.
I just saw my Oncologist today, and got my 15th year of PCRU. I am still on the Gleevec, and really keep telling myself to take a vacation or cut dose.
I have heard how well a lot of people are doing on the Sprycel. May you all continue to beat this disease.
I really will try to get back into the swing of things by March, but I do miss everyone.
Anxious to find out how everyone is doing with their TKI treatments, and would love to be able to inspire any new people who have no idea what to expect.
God Bless All Of You.
You know how I feel - you are cured. And have been for a very long time. You take Gleevec because it gives you comfort. If you stopped taking Gleevec, you will be anxious and nervous. And I can understand and appreciate that feeling. I'm anxious about narrow widths in high places.
But consider this. You don't have to stop all at once. As you are addicted to Gleevec, you can stop slowly. First thing to do is cut your dose in half. And in three months when you receive another PCRU, you can go one month without Gleevec and get tested in one months time. When you receive another PCRU, you go another month and another month. And then when you have a year of PCRU's, one month at a time, you will have been weaned off your dependency, You would continue to go back to every three months and continue your PCRU, sans Gleevec.
And know this - every single patient, without exception, who lost response after stopping their Gleevec during the STIM trials, re-attained their response once they resumed. No exceptions. Your risk in trying, therefore is < 0.00x%. But you have to want to do this. I do recall when I went without my TKI the first day deliberately when I tried to stop. I was pre-occupied that night whether to acknowledge I am making a big mistake in trying. I went on nine months without any drug. What a feeling. I went back on because my numbers did creep up. A couple of months later, after resuming my low dose, back near or below detection.
I envy your position. PCRU for 15 years. Wow.
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"