Drug Free?

Thus a new chapter begins..........today will be my last day on Gleevec. Two years sure has flown by, 48 pegasys injections later- and only time will tell if the CML has left my body for good. The thought of being drug- free is a hard one to process, it is an ideal situation- one every CMLer hopes for......yet looking forward, I am having mixed emotions- ecstatic at the thought of moving on from the CML, scared of losing my safety net (Gleevec). Gleevec and I have a love-hate relationship, Gleevec has been a constant throughout this jouney. I love Gleevec for giving me a 2nd shot at life- keeping me out of the chemo ward and for successfully inhibiting the nasty tyrosine kinase that lurks in our chromosomes- I hate Gleevec for making me feel different, changing my physical appearance, giving me headaches, cramps and that nauseous feeling. Alas, daily ingestion of Brian Druker's magic formula is something I can do without.

I was diagnosed with CML in December 2006 at the age of 25, younger than most patients. Let's say time- machines actually existed, and the CMLKid today had a meeting with the CMLKid at diagnosis- I think the conversation would go a little something like this (new patients take notes):







Kid, you are about to embark on a journey- you will be climbing a mountain, the ascent will be steep and the slopes slippery. There is no map for this journey, no climbing equipment either- there are no sherpas to guide you up this mountain, no trail to follow. Throughout this journey your body will be acting against you, the only way to successfully complete this trek is to keep your emotions in check as each day will be a test . Some days you will feel physically fit and will be able to climb for hours at a time, other days you will just want to stay in bed - the climbing never stops.........descent from this mountain is not an option. Along this journey you will meet teachers, others who have climbed this very same mountain- while some have trekked much harsher conditions. You will meet people who are climbing but were not able to finish their journey- these will be your greatest teachers. Your family and close friends will offer to go on this climb with you, do not allow them to- at times it can be a scary place, inform them of your whereabouts but don't further invite them to this journey. The climb requires you to be in the best physical and emotional conditions; sleep sufficieintly, exercise regularly, drink lots of water, eat healthy foods, take your meds regularly- this is not easy but is essential for a successful climb, keep your mind at ease- remember, the only way to the top is one step at a time. As you will need all of your energy and resources, it is necessary to release anything from your life that is depleting you of these two things. When you are lost or feeling as though you are not making any progress on this journey- reflect- review the landscape, reach out for help, there is more than one way to the top of the mountain. Educate yourself about the terrain and conditons you are climbing in- and make noise! Those who think they know better will insist that you stay the path you initially embarked on, do not be afraid to switch gears- often times the change of course will lead you to the top, make lots of noise.....remember the squeaky wheel get's the oil! Be patient with your body, try to understand it- often times, the healing is from this understanding.



Today friends, I am gearing up to reach the mountain's peak- I am not sure if I will be up here for a week, a month, a year or a lifetime...........the journey has made me a stronger, wiser person. Some of you have held my hand for part of the trek, others have been here since Day 1 offering support and encourangment. To those of you who enabled me to get to this point, I have nothing but love and gratitude for you- you are the reason I am here 5 years later.......within a grasp of "dislodging the bullet".

Health & Happiness,

CMLKid

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:

http://www.petitiononline.com/FDAOMACE/petition.html

CMLKid

Pulling Over

Wow, these last 3 days have been peachy keen! Nope, not because it's been a long weekend with great weather, not because Butler and Duke are playing in the NCAA basketball finals tomorrow or because the U.S recently announced much needed major reforms to healthcare........these last few days have been awesome because I'm drug free!

Last Thursday I had minor surgery to have some tissue removed from my tailbone- in order to speed up the recovery process I've been advised to stop taking Gleevec for 1 week and I was even ordered to skip a dose of Pegylated Interferon!?!!?? I have not been on a drug holiday since I was diagnosed back in December '06.......I totally forgot what life feels like on the other side.

Over the last couple of years I have conditioned myself to regular take my meds. On Thursday evening, I was forcing myself to eat a large pre- Gleevec meal.......a few bites in and I dropped my fork on the plate, it hit me at that instant- I didn't need to eat because Gleevec was off the menu for the next short while. Cool!

In addition to stuffing my face, I usually have Gleevec right before I go to sleep with copious amounts of water........(this usually means answering natures call at around 2am.) I find consistently following this procedure minimizes side effects. What are your pill popping rituals?

So, these last few days there has been no ingestion of TKI's or Sub-Q injections.........I could get used to this! I have an appointment with my Hema-Onc this Thursday, I'm going to request a drug holiday extension. From what I've heard from other patients, Gleevec takes 7 to 10 days to completely leave your body........at the 7 day mark I'll have to resume G-vec. I will request a 1 week extension- I'm pretty sure I will be denied but hey, you don't lose anything by asking.

This feeling I've had these last few days is hard to put down in words; is it a sense of normalcy? Maybe it's the freedom; not feeling guilty when you pass out on the couch and wake up at 4am to realize you forgot to take your pill. Or perhaps it's just the overdue break from routine that I think I needed, I mean every driver needs to pull over from time to time to recompose themselves.

I am in no way endorsing that you stop your medication, I would not have done so unless I was given the green light by my doctor. What I will say though; the drug free experience I have had over this past weekend has only reinforced my decision to undergo combination therapy. The thought of exiting CML Boulevard in 2o months is exciting, it would be awesome if there was bumper to bumper traffic at the exit...............GOOD NEWS! (Woah- isn't this an optimistic post!?!!?)

The University of Michigan and Dr. Talpaz have announced that the flood gates are wide open......they want to up the number of patients on combo. therapy and they will be quite accommodating to patients. Canadians/Americans/Overseas........all are welcome! Jerry Mayfield made the announcement on his website on March 11th. Dr. Talpaz has a strong belief that combo. therapy has curative effects and it has been reported that he believes up to 85% of patients could be CML free after undergoing trial protocol.

For those patients who have already shunned the idea of TKI + low dose Interferon- I would like to hear your reasons, just an informal discussion amongst patients. Perhaps their is something myself and others undergoing combo therapy have overlooked. If you have decided to try out combo. therapy- what were you reasons for wanting to try this?

Please post below, this is a hot topic which could change the way this disease is treated.

That's all folks.

CMLKid

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.