What's your Exit?

The blog was on hiatus due to the Olympics, but now we are back in full effect!

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Last weekend I was driving home from a night out with a few friends, I was driving on the same highway which I always drive on- but something caught my eye. A very popular exit was barricaded and motorists wanting to exit were forced to stay on the highway and continue driving; "how frustrating" I thought to myself, "glad that's not my exit!"

A few seconds later, something came to mind- what's my exit? No, not on the actual highway- I'm talking about CML Boulevard. Aren't we CML patients driving on a road with no exit in sight? I've been on this route for more than 3 years, I can't even get to a rest stop! It seems that when all of us start out on this journey we are sent out on a common route, all of us CMLers are put out onto Interstate Imatinib.

Yep, the toll to get onto Interstate Imatinib is a pricey one- $3500/mth.....for that price I expect paved roads, yet for some reason this route makes me feel nauseous.

Does it really make sense to put all patients on the same route? I mean what if I can't drive on Interstate Imatinib and I always have to pull over because the road sickness is making it impossible for me to refuel? Why don't the "powers that be" start some of us out on the Sprycel Speedway? I mean, with the advancement in research- it is very feasible for your doctor to look under your hood and determine what would be the optimal avenue for you to take.

When in doubt, I always use my GPS- this nifty device always seems to tell me the fastest route between point A and point B, it even takes into account traffic and weather. What is the quickest way to get from Point A (diagnosis) to Point B (cure) on CML Boulevard? How have some of us been on this drive for over 12 years?

What if the "powers that be" who are conducting traffic on the CML Circuit are plugging into a GPS of their own? The Greedy Profit System.

If you subscribe to the GPS school of thought (I'm not saying you should, but it is one way of observing traffic) the roadways CMLers are traveling on would no longer be maintained and policed by the government, instead these roads would be controlled by private funding.

The goal of the private road keepers would be to maximize traffic and make serious profits at the toll booths. Road owners would want everyone driving on their specific route- sweet deal isn't it? Imagine running a super long private road where motorists are paying per mile to reach destination unknown- $$$.

The biggest problem on this road system would be that; toll keepers, police, highway patrol........everyone would be getting paid privately. What would happen if motorists- one by one- got off this highway? The road would be less used, toll booths would no longer be filling up, less highway patrol would be required- police officers wouldn't be writing as many tickets......slowly the private road keeper would be put out of business and CML Boulevard would be a cold deserted street.

Sad reality is, CML Boulevard is jam packed with bumper to bumper traffic. Traffic lights aren't changing colors, engines are overheating, the price of gas is going up and if you want to find a specialized mechanic to check you out- good luck!

Detour:

I'm going for a cruise on Pegylated Parkway tomorrow..........

I say we all start testing the speed limit and make a run for the Autoban.

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 music........fast 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 ....ie. 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 things......like 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

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?

Hmmmm........you'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!

Take 2

Well.....this past weekend marked my 2nd time taking Pegylated Interferon, it went rather smoothly- I think what did the trick was popping an extra strength Advil shortly after taking the injection. The last time I took Interferon I waited for the side effects to set in and only then I took an Advil- I guess this time I was proactive rather than reactive.

This time around was also my first time doing the injection on my own, the previous time I was supervised by a nurse. I personally find the tricky part of injections is psyching yourself out into puncturing the injection site- I mean, you know its gonna hurt! I'm lucky for the reason that I only have to do this every 2 weeks- I know other CML patients/diabetics etc. who have to undergo these kinds of injections on daily basis.....I'm sure this gets easier over time- the experts tell me after the first couple of months you can do these injections in your sleep.

Also, the first time I injected I raved about the wonders of Wheatgrass- a few experienced patients e-mailed me and told me to scale back on my wheatgrass.....although you get a kick of energy from Wheatgrass- wheat grass is an anti-oxidant and oxidants are useful in attacking harmful cells......I don't think I would've ever figured that out on my own (I'm lucky to have a solid network of experienced patients giving me pointers). The benefits of blogging I guess.

My advice to all newly diagnosed patients- become friends with experienced/knowledgeable patients.....you'd be surprised how many CML'ers have been around for 10+ years- they have a wealth of wisdom and experience to share with you. I have a lot of respect and admiration for the "old- timers"......I've been on the scene for 3+ years and I can't wait to get out....how some of you have been doing this for over a decade beats me (I'm sure they're surprised themselves!)

For those of you unfamiliar with CML- these new wonder drugs are a recent discovery......in the good old days (ie. the late 1990's/early 2000's) patients were loaded up with high dose Interferon- you'd hear horror stories of the side effects; depression, psychosis, severe fatigue, disabling cramps and muscle pain, hair loss......yikes! To further complicate the situation this wasn't a temporary set-back that would last a few months.....this was their means to survival!

Doctors often tell their patients to realize how fortunate they are, patients like myself got into the game at a time when research was advanced and modern science had a detailed understanding of this disease- that's great.....believe me patients like myself do realize how lucky we are- but nobody wants this disease and nobody wants to be on these drugs. The patient world really needs to push doctors and industry into fighting this disease more aggressively.

I'm looking forward to a time in the future when CML will be a thing of the past. Now, if we could only find out how they get the caramilk into the Caramlik bar........

P.S. Please see the detailed comment left on my last post- I found it to be very informative.

3344.13

The title of this blog is a special number.........not only is it a big number (1 digit short of a phone number), the magic number does not refer to a boring government legislation, nor is it the mileage on my Honda Civic, nope- its not the combined weight of the starting defensive line of the New York Jets either.............3344.13 is my "lease on life".

That's right, for this very reasonable price you too can have 30 days worth of life saving drugs (side effects sold separately :P)

The sad truth is many CML patients are subjected to VERY high drug costs- and an alarming number of us aren't covered provincially or through private insurance- what is the fate of these patients? Should we wish them a quick and speedy recovery and go back to our designer pill popping? Is it safe to say the system isn't working when all patients in need aren't getting life saving meds!?!? Is it fair for drug companies to charge these amounts- I mean theses "magic bullets" spared most of us from bone marrow transplants and before these drugs came out I'd be writing a bucket list instead of a blog.

On one side of the equation we get to have a quasi normal life, on the flip side- we're expected to eat these pricey pills for the rest of our lives.....

Equation:

QUASI NORMAL LIFE = EAT $$$ MEDS FOR THE REST OF YOUR LIFE

How do you fund a chronic illness in a system that isn't designed to sustain gourmet pharmacy bills? The engineer in me is saying the square peg wont' fit in the round hole:

I'm asking these questions because I recently came across a story which I took rather personally. A young CML'er in the UK is being denied life saving drugs (Dasatinib/ Nilotinib) because the government is saying the cost of his drugs is too high.....that's a tough spot to be in- your life is on the line- your newly married and have your whole life ahead of you, you know there is a potential solution available- yet there is no way you can afford your medication............this could happen to anyone of us.

A small world we live in.....

Comedian Jerry Seinfeld does an interesting bit about how everything is smaller on airplanes: " There's always tiny food, tiny liquor bottles, tiny pillows, a tiny bathroom, a tiny sink, and tiny soap. Everone's in a cramped seat, working on a tiny computer. There's always a "small" problem, there will be a "slight" delay, we'll be a bit late, if you can be a little patient...."

I'd have to say that my first week on Interferon compares to what Seinfeld is talking about, everything is smaller- light chills, negligible muscle ache, barely there headaches, minor fatigue, low dose interferon all this to fight residual disease. Now we're a few days in- I still feel side effects- just at a more suppressed level.

Today I had to go in to get blood tests done. As part of my agreement with the Americans I have to go through a whole alphabet of blood tests every 2 weeks. In order for the lab to properly preform all the tests- I'm required to submit 4 tubes of blood (my personal record is 6 tubes!).

The blood technician asked me if I was comfortable giving blood...really? Me? Have a problem giving blood? I tried to keep a straight face...... After I reminded her that she needs to use the yellow capped tubes instead of the red ones- she knew she was talking to a pro :)

Blood results will be in tomorrow- it'll be interesting to see what effect the interferon has had on my blood chemistry over the last week. I'm not sure what to expect- am I feeling more tired because of reduced hemoglobin or is that just the drug doing what it does?

I'm only slightly anxious ;P

1 Down, 51 To Go!

Well.........the weekend sure did go by fast. When I found out that this would be my first wknd. on Interferon- I decided to wipe the slate clean and make no plans, social or other. I scheduled a lazy weekend at home and planned on just catching up on some much needed sleep.

The worst of the side effects occurred on Friday night (see previous post) and carried on into Saturday, by Saturday evening I was starting to feel back to normal. I did add a new weapon to my ammunition of natural killers; a wise patient told me that Interferon would cause fatigue so I should start my mornings with a shot of wheat- grass. The benefits of wheat grass are endless; the chlorophyll component of wheat-grass is known to stimulate hemoglobin production resulting in more energy. The one drawback is the taste of wheat grass, bad times! Why does everything that is good for you have to taste so bad? I'm not sure if it was the wheat-grass that did the trick- but overall I'd say I had a good energy level these first couple of days on Interferon- although at times I do feel slightly fatigued.

Generally speaking the more doses of Interferon you ingest the more likely your level of fatigue will increase. You see, TKI's (Gleevec/Sprycel/Tasigna etc.) are awesome for the reason that they are targeted therapy's ie. they can go into your system and prevent the development of new harmful cells without harming the healthy cells. Interferon is not so forgiving, although cancer cells are attacked and destroyed- healthy cells are not spared, which is why patients on this protocol are ordered in to have blood work done every 2 weeks. A drop in blood counts is expected, how soon- varies patient to patient, if counts drop below the acceptable level the dose of Interferon is scaled back. Alas, I'm pretty optimistic- I've had a pretty good response to CML treatments with limited side effects thus far and also have age (and wheat-grass :P ) on my side.

Back to the rat race tomorrow..........