A few more months had passed since I began taking Gleevec again after the abysmal failure of our cold Turkey abrupt ending of the no drug experiment. After three months my blood was back to normal and within six months my DNA came back in line with the reversion to a B Positive blood marker. As long as I retain a sustained full remission on Gleevec, I remain a clone of my brother.
But what happens next? There are many CML patients that are denied a pure and sustainable remission from the get go. The drug only breaks the surface of the disease in some instances and does not give the full 5 log remission that is known as a complete metabolic remission or considered curative. Patients in this position have alternatives at this point in 2010. If Gleevec is not working for a patient suffering from Cml, there are new drugs that have been created, 2nd generation TKI’s by Novartis that are more potent than Gleevec. Drugs like Tasigna/Nilotanib…Dasatanib…Bosutinib…Ponatinib. Four more powerful TKI drugs that can put your Leukemia in arrest. The only problem is that as you move up the TKI ladder, the side effects become harsher and more dangerous in some instances. A trade off of either doing nothing and dying of Leukemia, or moving on to the harder drugs and possibly passing from the harsh side effects they create.
Nilotanib was created to overcome intolerance to Gleevec and is 20 to 30 times more potent. You can’t eat any food 2 hours before you take your pills and then need to wait an additional hour afterwards to eat again. Going against these guidelines could cause instant death through prolonged QT, a heart attack of sorts.This type of side effect would scare anybody. Dasatanib is even more potent, 325 times more potent than Gleevec. Used only as a last resort for very specific mutations this drug can also do great damage to your heart.
A very good friend of mine, Mark Oswalt lost his dad to cancer a few years ago around the same time his mom was diagnosed with CML. The timing was awful as was the diagnosis. Mrs. Oswalt was a trooper and followed the treatment protocols as per her doctor’s orders and trudged along with the usual Gleevec side effects while gobbling down 800 mg a day of the little brown pills. Her side effects were tough but the alternative was worse. Over time her PCR testing continued to show improvement, but never that 5 log reduction in her pcr markers. This was not good. The drug was too weak to control her Leukemia. Her doctors moved her up to the next level drug Tasigna when it was approved and this 2nd generation miracle drug quickly and efficiently put Mrs O into a lasting remission. So far so good! No Bone Marrow Transplant, no Interferon, no long term hospital stays. That’s the way to do it.
My current situation leaves me again cruising along on 400 mg of Gleevec a day and full 5 log PCR, complete remission. Dr. Dave wants me to maintain an every three month blood draw so we are sure to stay on the same path of remission. Sounds good to me.
On the home front…Nick got his drivers license and a great Black Toyota Rav 4, driving himself to the Prep for school and his first job working as a dish washer at Wally Mitchell’s restaurant in Surf City, NJ. Joey was growing at a frenetic rate and moved hockey clubs to higher age levels and away from more drama. He was also courted and accepted a spot at the somewhat interesting and prestigious high school The Academy of the New Church to play hockey there. A prep school based on an interesting religious take on a breakaway Lutheran Swedish Church Leader. Ok then. It would indeed be interesting. My time has been spent looking for a vacation home in Florida and the spot is narrowing down to the mid West coast. We shall see.
Next Up: New Schools, New Teams, New Adventures