That's one for each month since no TKI!!!!
Sorry it has been awhile since I last updated this blog but things have been incredibly busy. When we last met here, I was getting ready for the November check up and PCR draw. My how time flies!
I am very happy to tell you that November, December and January PCR's are all NEGATIVE!!!!
There is something else quite interesting happening. As you may recall, although I stopped the low dose of Sprycel, I have continued on a very small dose of Peg IFN. The dose was 90 UG once a week. Notice how I am using the past tense? This dose usually did not represent any side effects for me, and I found it very easy to tolerate it. But that changed in early December. It seems that the combination of a TKI and Peg IFN may have, at least in my case, re-sensitized me to IFN. So we negotiated a decrease in the dose to 45 UG once a week. I have to be thoroughly honest with you, during the holidays the side effects of the Peg IFN had gotten so bad, which never, NEVER happened to me before, that I actually gave myself a holiday for just over two weeks - no drugs, yet the PCR is still negative....That is very significant for me.
There is much more going on, but I cannot share all the details just yet. I can give you a hint, we are looking at my immune profile and a variety of other things. We are also investigating the possibility that the Peg IFN may have caused some sort of arthritis, but I am not worried about that so much, as the joint pain goes almost completely away when the drug is stopped. This makes me think that this is a drug related problem that may be easy enough to resolve, just stop the IFN, which I want to do, but which we are waiting until we establish a trend...Remember wean off the TKI, then wean off the Peg IFN, then cross our fingers and continue to closely monitor the situation....
I am not going to lie to you, this is scary sometimes. Especially with the joint pain, I can convince myself, late at night of course, that the CML is back. But the PCR and my blood counts all show that it is not.
My next appointment is in a few weeks, but I am savoring this moment for now and relishing in the idea that I just might have beat this thing. Why not think positive? It is so easy to think negatively. For now the only thing negative I want in my life is negative PCR values.....
Just recently we celebrated the 50th anniversary of President Kennedy's inauguration. He followed his words with actions. He dared Americans to think big and reach for the moon even though we barely had any tools to dream such big things...
His Brother Robert Francis Kennedy quoted George Bernard Shaw, "You see things; and you say, 'Why?' But I dream things that never were; and I say, 'Why not?' (from the Plays Back to Methuselah: In the Beginning, Bernard Shaw: Complete Plays and Prefaces, Vol. II, page 6. (Dodd, Mead & Co. New York 1963)
This is what we all must continue to think about - the "Why Not?" JFK showed us that the only thing stopping us from moving forward was ourselves. If we could just get over ourselves and work together, we could reach the moon. Another great President, FDR at his first inaugural speech said "The only thing we have to fear is fear itself". Just recently President Obama told us " We Do Big Things"....Each of these presidents were in office during very difficult times for America, not so much unlike a diagnosis of cancer....They led by example and we all persevered...
Great things are happening. At the very least this experience will teach us something or add another piece to the puzzle for us.
In the distance I hear the sound of somebody opening up a can of "Whoop ASS". Watch out quiescent CML stem cells & minimal residual disease, many of the top CML researchers and doctors in Europe, America and Australasia are on the move, and "we gonna find you"....
