Wednesday, January 6, 2010

Almost There.......

This Friday is an exciting day for me and what I hope to be a turning point in the treatment of my CML. For over a year I've been in negotiations with a major American hospital to enroll me in their clinical trial which combines the use of 2 drugs- Gleevec and Pegylated Interferon (even though this combination has shown curative results in CML'ers- such a treatment option is not available to Canadian patients, I know- I can't figure it out either).

Normally, joining a clinical trial is a straight forward process- your doctor refers you to a trial coordinator, you run a few tests- get a prescription and BAM- you're on your way. My situation is a bit more tricky- it involves 2 countries, 2 hosptials, 2 doctors and 2 drugs....I am acting as my own trial coordinator (one time I even walked out of the hospital with a sample of my own bone marrow and put it on a FedEx truck!)

Enrolling in the trial has been a logistical nightmare, by the time test lab results come in- previous results have expired- and you have to start all over, you need blood samples shipped to the U.S- and the custom papers are missing, when an American doctor writes you a prescription- a Canadian doctor has to co-sign in order for it to be valid.....the list goes on......I must say though-this has been a very educational experience and I've become an expert in cross-border policy. :P

To their credit, I must say the American hospital has been very nice and accommodating to me (probably because I harassed them on an almost daily basis for over 8 months).......they were about to reject me from joining the trial claiming it would be to difficult to track a Canadian patient- but the trial coordinator said "we just don't have the heart to say no to you" (3 cheers for humanity?).

Since the Americans couldn't say no to me and the time constraints required by trial protocol are next to impossible to follow if you live outside of the U.S- we managed to reach an agreement......I will be followed as though I am on the clinical trial but will not be constrained to the military-style regulations that are required by the trial. I still have to do all the things a trial patient would do but just with a bigger time window. This whole experience has also helped me hone my negotiation skills.

Lets see......cross-broder policy, negotiation- now if I could only perfect lying I could potentially run for office :P

That being said- I'm super excited to be adding in another drug to my regiment (4oomg of Gleevec will continue to be taken daily and 90 micrograms of Pegylated Interferon will be taken once every other week- it comes in needle form and is injected in the stomach). However, I am weary of the initial side effects that come with the new meds- fever, chills, headache- a potential drop in blood counts. Yeah, its intimidating and even a bit scary- but the thought of being off all drugs in 2 years is well worth the risk. When the stakes are this high- you go all in! Taking a new drug is never easy- I remember when I first went on Gleevec.......what an uncomfortable feeling .

Interesting fact: the medical resident who discharged me from the hospital when I was first diagnosed with CML wrote me the wrong prescription- thus, I was on the wrong dosage of Gleevec for over 2 months- crazy, huh?

It is not easy to accept the fact that you have to rely on medication to live, it's physically and emotionally difficult to ingest foreign chemicals day in and day out- and for those of us living with a chronic illness it is even harder to see a light at the end of the tunnel......hopefully Pegylated Interferon will begin to expose some of that light.

1 comment:

  1. Hey Kid,
    Glad you are almost there! It'll be worth it if it leads you off all drugs down the road. I hope more combo trial data will motivate the docs to open trials in Canada.