Magic and Cancer

[Guest guest]

Hello All,

I haven't posted here in a while but here are my comments.

I think the Globe and Mail article was fairly balanced and represented the

hardships - thanks for bringing them up Tracey, as well as some of the

blessings - Ron, Zavie and Eleanor being in a slightly different age

category, give us a different perspective.

In defense of Rita and the reference to magic, I think I know where she is

coming from. When we consider that Gleevec isn't the " first " targeted drug,

actually Retinoic Acid, or Vitamin A which is used to " CURE " APL was the

first targeted drug (Suzan M. taught us that). Using words like " magic " is

deceptive because it diminishes the research, work and dedication our

Doctors (and Dr. D. specifically in the case of Gleevec) poured into

getting this drug to market. As we all know, CML is an incredibly complex

disease and we still have much to learn about it.

Like everyone else I am happy for my fellow CMLers who have achieved a level

of remission with with Gleevec. But cancer is a formidable enemy and

remission does not equal cure. As long as there are stem cells surviving

(and sleeping happily in a quiescent state) then resistance and relapse are

concerns.

I prefer to think that there was nothing magical about the research and

determination that goes into discovering these life saving drugs. I believe

that they represent many long hours of painstaking research and testing and

re-testing, then the collective holding of our breath while we all wait to

see if this drug works or not.

From looking over the list I see there was a discussion about interferon.

Yes, I have gone back to interferon and grateful that it was still an option

for me. I am on low dose pegylated interferon and doing incredibly well.

Why did I switch back? I developed kidney problems, probably as a result of

a kidney problem during my adolescence. Pegylated INF is quite remarkable

in that the side effects are greatly diminished. I can say this because I

have tried both. I only inject once every 10 days which gives me plenty of

time to " forget " about CML. I usually have only a very slight achy feeling

two days after injecting. No more GI problems, no more low Hgb, and I

enjoyed an incredible tan from the summer sun which hasn't occurred in over

five years. I was careful with sun screen though. I lost 15 lbs without

switching my diet and I exercise and work out more. The Gleevec " foggy "

brain is gone. I am not doing a sales pitch for INF, although I admit it

sounds like one.

As I write this there is the pan European trial called the SPIRIT trial

using combinations of INF and Gleevec. Patients will be given either 400 mg

of IM, 800 mg of IM or 400 mg of IM and low dose Peg INF. The patients in

the combo arm will eventually be weaned off of IM and then eventually be

weaned off of INF and be closely monitored. I am in contact with patients

who have stopped IM and are enjoying incredibly low level PCR and watching

their PCR levels drop even further. This is a hopeful sign. After 25 years

of INF science still doesn't completely understand how it works, but this is

all interesting. I hear there is a trial starting in Israel, and then there

is one starting at Hopkins. I sure wish there would be something here

in Canada.

All this to say that low dose Peg IFN cannot at all be compared to the

horror stories of pre Gleevec IFN, and I would encourage anyone out there

thinking about a combo trial to give it a try. Especially if you are

younger.

Will I stay on IFN? Who knows? I could go to either Dasatinib or

Nilotinib, although most experts would prefer Dasatinib, but I am grateful

for having choices. For now I continue to be in CCR and am close to a 3 log

reduction, you do not need to be PCRU on IFN - but it sure would be nice

;-). It was not easy giving up my PCRU status on Gleevec, but I didn't like

thinking about the possibility of dialysis.

We will all need to manage ourselves according to what works best for us

individually. I encourage the competition because it is clear to me we will

need even more choices as time goes on. But fingers are crossed for a cure.

Now, if humanity can figure out a way to get these drugs to all patients

regardless of their financial status and where they live, well, now that

just might be getting a little closer to magic.

Peace, Love and all groovy things,

Cheryl-Anne