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..........

Gleevec, I'd like you to meet your new friend.....

What a day! Wake up was at 6:00 am, which is always tough- because I am by no means a morning person. In addition to a full day of work I had to complete the last remaining test prior to starting the Interferon- an ECG (electrocardio gram). This test is simply a precautionary measure to make sure your heart is functioning normally. The ECG was completed by 9am and the results were immediately faxed over to the American hospital. Shortly after, I went to work- even though I was physically at the office, my mind was focused on what would be in store for the upcoming evening.

At around 10:00 AM the American hospital contacted me and gave me the green light- ECG and recent blood results had been reviewed- I was now fully licensed to take Interferon. First things first though, I didn't have the drugs on me and secondly I didn't know how to administer a Sub-Q injection- just details, right? I left the office at 5pm, raced over to the Cancer pharmacist who had the drugs ready for me (2 prepared syringes securely fastened to an ice pack). Zipped over to the local clinic and met up with a very nice nurse who taught me the in's and out's of injecting . We went through the procedure a few times: thoroughly wash hands, disinfect injection site with alcohol swab, gently insert needle under skin- pull back syringe to look for blood.....no blood? Push- Inject, properly dispose used syringe.

Within a few seconds the deed was done! I've been waiting for this Pegylated Interferon injection for over a year and a half! I felt normal for the first hour or 2, then at around 8:30pm I started to feel the expected side effects.....slight headache, shivers and body aches- also, I've been battling a mild sinus infection for a better part of the week so all symptoms were compounded. No pain, no gain- right? I'll have to take the injection (90 micrograms) every other week.

The shivers got pretty intense- teeth chattering and all. I buried myself under a pile of blankets (3 to be exact) and also had on 2 layers of clothes......no relief! An experienced patient told me that this would happen, her advice- pop an extra strength Advil. I feel a lot better now, how cool is tribal knowledge? In all honesty I am happy to be shivering and aching- its a sign that the immune system is awake and fighting- potentially attacking quiescent and leukemic stem cells., cells that Gleevec can't reach........the very same cells that need to be abolished in order for us to be cured. These symptoms originally last for 2-3 days and then you begin to gradually feel normal- until the next dosage.

Do any other patients have pointers for dealing with the side effects of Interferon?

I'll be sleeping a lot easier tonight knowing I have the tag-team of Gleevec/Pegylated Interferon battling what's left of the CML in my body.

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.