Saturday, February 6, 2010

Shots, Blood Work and Benchmarks

I remember a time not so long ago when "another round of shots" meant the party was just getting started, it was something you'd have to yell to the bartender across the bar and over loud forward 4 years...........nowadays when I say "another round of shots" I'm referring to Pegylated Interferon- the bartender has been replaced by a white coat pharmacist- shot glasses by a syringe. The one constant- Friday remains my favorite night of the week- even though I may not be painting the town red I feel great satisfaction knowing that I am proactively attacking this disease.

Another round of shots also means another injection, a few more days of mild side effects and blood work. The good news is- we've been going at this a month and my blood counts are all still in normal range! This is very encouraging- initially I was set to start at 180 microunits (an unrealistic dosage, since most patients can't tolerate this amount), then the dosage would drop to 90 and eventually to 45. My doctor has been quite flexible with me, since I am not officially enrolled in a clinical trial I am allowed to start my dosage at 90 microunits.

Luckily I hooked up with a pharmacy that specializes in cancer drugs- and man do they have service. For instance, even though the pharmacy is 20 km away from my house the pharmacy drops off the drugs at my door (30 minutes or its free?), another perk is that Roche- the manufacturer of Pegylated interferon only offers the drug in 180 microunit injections. The pharmacy splits the single syringe from Roche into two 90 microunit doses- thus saving me some serious $$$.

I do feel tired from time to time- this can also be due to my insufficient sleep (I find it nearly impossible to get to bed before 12:30- and I'm up again at 6am :S ) For the most part though- energy level is good I shot up on Friday night and on Saturday evening I attended a friend's b-day party, today I feel practically normal.

Well, I don't think you can ever feel totally normal when you are continuously medicated- but the CML'ers will get what I mean. When you live with a chronic illness you "learn" to gage yourself- you establish new benchmarks.........headaches that would once ruin your day are the new norm, those visual disturbances that would normally worry you- well it comes with the territory, the nausea that would once cause you to cancel your vacation- just pack some extra gravol, losing pigmentation- yeah....I know its no fun losing your color- but I mean you have leukemia, right?

I don't think patients realize how far they have strayed from their pre-CML health status. Sure, we try to eat better- sleep more, drink lots of water, exercise regularly- not stress on the small stuff........but imagine you did all these things- drug free!?!?! Imagine you did all these things with "flawless" DNA, marrow that controlled itself, white cells that would know when to stop dividing, a spleen that didn't feel enlarged and ankles that didn't swell up because of water retention.......

Think of what life would be like- you'd be able to go to work everyday and not worry about being canned because of your insurance costs, when you'd meet a member of the opposite sex that you are genuinely interested in you wouldn't have the burden of telling them you have chronic cancer, you'd be able to travel freely and not have to make note of the closest hospitals in new cities, if you have kids you wouldn't worry about not being around for them, if you don't have kids you wouldn't worry about not being able to have them- on the flip side you'd be missing out on a lot of cool all the great people you meet, being told Grapefruit is bad for you :P and having a connection with your body that few around you can comprehend.

In the end though, I wish two things for all CMLers:

1) you have became a better, stronger more enriched person for having this disease
2) you don't have this disease anymore

Monday, February 1, 2010

The Other 90%

Last week I attended a talk concerning the development of Africa; the speaker was a dynamic, young fellow who travels the world to give his audience a first hand look at the real Africa. As he speaks there is a photo show playing on the screen behind him- a diverse range of photos from Africa is showing- everything from super highways and luxury skyscrapers in Cote D'Ivoire to a mother clinging onto the malnourished body of her infant child in a village just a few miles away. "We don't need foreign aid" the speaker argues, "what we need is to be self- sufficient....don't give us bags of rice- teach the people how to grow their own rice." Then he makes reference to a hot new book that is on the market:

Design For The Other 90%: The title is self- explanatory, 6.5 billion people (90% of the world's population) do not have access to things we take for granted; food, shelter, clean drinking water etc. The book takes a look at the new wave of: researchers, engineers, students, social entrepreneurs- a group of people wanting to offer useful products to the masses (what you see on the cover is a really cool purification straw!)

That got me thinking: CMLKid, what percentage of the world's population has access to TKI's? I did a quick estimate......and I'm willing to guess 90% of CML'ers don't have access to sufficient drugs.

That lead me to do some research- I began to ask myself a systematic series of questions:

What percentage of the world's population has access to the internet? 26%.

Who are the people posting on patient message boards, CML chat group etc.? For the most part they are Chronic Phase CML patients from Canada, U.S.A, England, Japan, Australia, Singapore, France, Spain etc.

Only 2 questions in and a disturbing thought came to mind........the people reading my blog, the good folks posting on the CML message boards, patients reaching out to one and other for advice and perhaps left over drugs....what do they have in common? All people from developed countries, literate and internet savvy. Not a bad combination, definitely not a part of the other 90%, right?'d think otherwise if you frequented the CML chat groups and message boards....these are the messages my fellow patients are posting:

" I just found out today that insurance Coverage for my sons Gleevec has ceased. Walgreen's tells me the cost for 6ooMG of Gleevec, 30 day supply is now $8950. In my opinion this is immoral. When did it get to be this high???? I have applied to Novartis for assistance."

"I can no longer afford my Sprycel its 4554.86 per month because I work on and off per hour when I can I anyone knows how I can get assistance with getting this med I am starting to have headaches its been 13 days without."

"Hey everyone.there is a woman that is in need of Gleevec and is not able to get it from her insurance co. Does anyone else have any left over? I would really like to help her. Please post on my wall if I can help. Thank you."

Yep! This is the upper- echelon of the CML world. These are the people with food, shelter and clean drinking water - they even have computers! Yet they (we- all of us!) are stuck in a system where the value of a drug is not measured by how many lives are saved but rather by how well it performs on the NYSE.

Houston, we have a problem?

Hold on, I'm still calculating.......

World Population: 6,692,030,277

Incidence of CML: 1 per 100,000

Approx. # of CML patients internationally: 66,920

I mean the capacity of Montreal's Olympic Stadium is 66,308......we can practically fit the world's entire CML population in a defunct Canadian baseball stadium, really!?!?! I'm sure we can find a solution for the entire 100%.

In other news: I had blood work done today (results pending) and Interferon this Friday!