Wednesday, June 9, 2010

Hey Kid, Where You Been?

Greetings! Well.......what can I say? I haven't updated the blog in about 2 months- it's not because pegylated IFN side effects had me down and out or because symptoms had me passed out in bed, nope- the counts haven't crashed either. When fellow patients e-mail and say Hey Kid, where you been? I say I've been living life........doing everyday normal things; focusing on my career, going to the gym, hanging out with good friends, road trips- oh yeah, I still have to go to the hospital every 2 wks. for bloods and inject every other Friday.

Yesterday marked exactly 6 months of me being on Pegylated Interferon (it was also my 29th Birthday- whoot whoot!) The combo. therapy journey is 25% complete and I don't think I could have asked for better results.......blood counts are consistently stable, side effects are minimal and morale is high! I am optimistic about the road ahead and am grateful to have 2 excellent doctors working my file. If all goes as planned I'll be drug free in 18 months, hospital visits will be a thing of the past and I will be able to tell the story of how I used to have CML.

I know the above paragraph is an optimistic one, however there are a lot of "what ifs" involved. We know that combo. therapy has encouraging results- but like most things in life there are those of us who will be part of the unlucky minority (I mean, you have CML right :P). I struggle with the idea of the trial protocol not working out- popping pills throughout my 30's is not where I want to be! As patients- there are a few factors we can control; eat your meds consistently, respect your doctor visits, lead a healthy lifestyle- other factors are variables that are out of reach and are just 'luck of the draw'. What if CML science was so advanced that the out- of- reach variables that were "luck of the draw" could be calculated and treated?

Guess what- we're making progress! Several of these out of reach variables can now be recognized and eradicated. A great example of this is the T315i, we know how evil the T315i can be, yet-nowadays it can be recognized through "non-standardized" mutation testing, better yet- there is great drug out there that has given unlucky patients a 2nd chance. Why then- have the powers that be decided the patient community has no need for this drug?

We know we have a critical problem when leading experts in the field and fellow CML patients are banding together to protest the FDA's decision to ban market approval of ChemGenex's super drug Omacetaxine. Here is a drug that has convincingly shown it is effective in attacking the T315i mutation, patients are avoiding stem cell transplants and getting a 2nd chance at life- yet, we're being told......."sorry, we can't do much".

To the FDA I say- spend a day in the chromosomes of a leukemia patient. After all, you are deciding our destiny- it's only fair that we share this experience together, right? Come on down to the chemo ward, sit with us as we anxiously wait for a stem cell donor to appear, join our families in the waiting room as they figure out if it's going to be groceries or medication this week, feel the anxiety throughout your body as the you hear the doctors shoes marching down the hallway- no really, I insist. Want more? I invite you into the body of a leukemia patient- what's that? You don't want to join us? That healthy blood that once flowed through your body with ease is now barely sputtering through your veins. Yes, that is why you feel tired and worn out. Don't you want to experience what it's like not have enough energy to roll over in your hospital bed? How about having to depend on a family member to accompany you to the washroom- not fun either, huh? Loss of appetite? Don't feel like eating today? What happened to your hair? C'mon, stick around- you haven't even experienced the emotional side effects yet. I know, I know- we don't want graft vs. host disease either- and to think all of this could have been prevented.

Spend a day in our chromosomes I say!

Patient activists Cheryl Anne Simoneau and Greg Stephens are lobbying the FDA to reverse their decision and help patients like you and me. Join the movement: