Wow, these last 3 days have been peachy keen! Nope, not because it's been a long weekend with great weather, not because Butler and Duke are playing in the NCAA basketball finals tomorrow or because the U.S recently announced much needed major reforms to healthcare........these last few days have been awesome because I'm drug free!
Last Thursday I had minor surgery to have some tissue removed from my tailbone- in order to speed up the recovery process I've been advised to stop taking Gleevec for 1 week and I was even ordered to skip a dose of Pegylated Interferon!?!!?? I have not been on a drug holiday since I was diagnosed back in December '06.......I totally forgot what life feels like on the other side.
Over the last couple of years I have conditioned myself to regular take my meds. On Thursday evening, I was forcing myself to eat a large pre- Gleevec meal.......a few bites in and I dropped my fork on the plate, it hit me at that instant- I didn't need to eat because Gleevec was off the menu for the next short while. Cool!
In addition to stuffing my face, I usually have Gleevec right before I go to sleep with copious amounts of water........(this usually means answering natures call at around 2am.) I find consistently following this procedure minimizes side effects. What are your pill popping rituals?
So, these last few days there has been no ingestion of TKI's or Sub-Q injections.........I could get used to this! I have an appointment with my Hema-Onc this Thursday, I'm going to request a drug holiday extension. From what I've heard from other patients, Gleevec takes 7 to 10 days to completely leave your body........at the 7 day mark I'll have to resume G-vec. I will request a 1 week extension- I'm pretty sure I will be denied but hey, you don't lose anything by asking.
This feeling I've had these last few days is hard to put down in words; is it a sense of normalcy? Maybe it's the freedom; not feeling guilty when you pass out on the couch and wake up at 4am to realize you forgot to take your pill. Or perhaps it's just the overdue break from routine that I think I needed, I mean every driver needs to pull over from time to time to recompose themselves.
I am in no way endorsing that you stop your medication, I would not have done so unless I was given the green light by my doctor. What I will say though; the drug free experience I have had over this past weekend has only reinforced my decision to undergo combination therapy. The thought of exiting CML Boulevard in 2o months is exciting, it would be awesome if there was bumper to bumper traffic at the exit...............GOOD NEWS! (Woah- isn't this an optimistic post!?!!?)
The University of Michigan and Dr. Talpaz have announced that the flood gates are wide open......they want to up the number of patients on combo. therapy and they will be quite accommodating to patients. Canadians/Americans/Overseas........all are welcome! Jerry Mayfield made the announcement on his website on March 11th. Dr. Talpaz has a strong belief that combo. therapy has curative effects and it has been reported that he believes up to 85% of patients could be CML free after undergoing trial protocol.
For those patients who have already shunned the idea of TKI + low dose Interferon- I would like to hear your reasons, just an informal discussion amongst patients. Perhaps their is something myself and others undergoing combo therapy have overlooked. If you have decided to try out combo. therapy- what were you reasons for wanting to try this?
Please post below, this is a hot topic which could change the way this disease is treated.
That's all folks.
CMLKid
