Huston we have a go for launch.
Sorry for being a total killjoy on the last post. It was important for me and needed to be done for me to continue to manage the stress.
Dr. Nevill was not in Vancouver today, so I met with one of the other lead oncologists to ask questions about the experimental trial. After talking with him I decided to go for it, and so began a flurry of tests to make sure I fit the criteria, etc.
I was accepted into the program, and I was randomized into the "Control" group to undergo the one of a selection of standard treatments. There was a 2:1 chance in favor of getting the trial drug, but I didn't get there. I don't feel bad about this as it could go either way, and in regards to the last trial I was part of, it turned out to be a good thing. At least in the short term - perhaps I would not have relapsed if I had it, or perhaps I would have been one of the patients who the trial went badly for..
So, based on my various heart tests today, they feel I am strong enough for the most aggressive option in the standard branch called a HiDAC (High Dose Ara-C & Daunorubicin) - Cytarabine and Daunorubicin in a continuous infusion in the vein, starting tomorrow. The length and amount I will know tomorrow after the Doc's do further assessment. This is the big guns, because they feel I can handle it, and it will give me the best chance of getting a second remission for the longest time, while they search for a donor match. A transplant is the only real cure now.
Some people have been asking about being a donor. From what I currently understand, there are various factors for a match, but your chances are as good as anyone else. In Canada it's done by the Canadian Blood Services "One Match", in the USA it's handled by National Marrow Donor Program. Every country/region has it's own version, and they all work together for the hard cases (like mine).
In the US, it's a simple scrape of the inside of your cheek, it's probably the same everwhere. You don't get to pick who you get to be considered a match for. You might be a match for one person, probably for no one. If you happen to match a bunch of people, they might question your planet of origin.
We're looking for my "genetic twin", so to speak, in a few key areas related to the creation of blood cells. I guess that means B+ blood type at least, but I don't know for sure.
If you are a match, which is rare, then there are two ways to "get the goods".
The first, and original method is juicing you up on pain killers and happy pills while they suck some marrow out of your hip with a big needle. It hurts for about 2 days (big bruise kinda pain). The thing itself doesn't "hurt" but it sure feels weird as they suck. This is the same as bone marrow biopsies I have been though ( I think 5 now ). Your marrow regenerates in about 6 weeks.
The second is they juice you up on a drug that causes your body to produce extra stem cells. After a few days, they hook you up just as if you are donating blood, and they "harvest" your stem cells and then put your blood back in. If you have ever donated platelets, it's just like that. The drug can cause "bone pain", which I have experienced (I have also had the drug), and it feels like the "growing pains" that most of us used to get as kids.
They put the "goods" in a bag, ship it to the sick dude, aka. me, and just pump it into the tubes hanging out of my chest. It works its way to the desired location, they pump me full of anti-rejection drugs, and hope my body doesn't have a hissy fit and freak out.
I just watch on the news tonight how here in BC the organ donor registry is about half the normal of other countries like ours. Remember when it was just a simple sticker on your drivers license ? I bet most of us were all donors then - I was. Then they had to complicate things. Like putting the locks on the patient fridge ( see Sonja's blog).
Not up for it ? Trust me, I totally understand - It's not like I was on the registry before this happened, or even donated blood. Like almost everyone else, it was one of those things I wanted to do, but never got around to. The nurses say it usually takes someone you know to get into this predicament before most people actually hit the "getting" around to it point.
So, if you are still thinking about it, please do it - if not for me, for the other father of two young boys waiting for some hope. I'm not the only one in this boat. (That guilt trip is worth about 50000 air miles - lol)
Don't let the "lock on the fridge" stop you.
Dr. Nevill was not in Vancouver today, so I met with one of the other lead oncologists to ask questions about the experimental trial. After talking with him I decided to go for it, and so began a flurry of tests to make sure I fit the criteria, etc.
I was accepted into the program, and I was randomized into the "Control" group to undergo the one of a selection of standard treatments. There was a 2:1 chance in favor of getting the trial drug, but I didn't get there. I don't feel bad about this as it could go either way, and in regards to the last trial I was part of, it turned out to be a good thing. At least in the short term - perhaps I would not have relapsed if I had it, or perhaps I would have been one of the patients who the trial went badly for..
So, based on my various heart tests today, they feel I am strong enough for the most aggressive option in the standard branch called a HiDAC (High Dose Ara-C & Daunorubicin) - Cytarabine and Daunorubicin in a continuous infusion in the vein, starting tomorrow. The length and amount I will know tomorrow after the Doc's do further assessment. This is the big guns, because they feel I can handle it, and it will give me the best chance of getting a second remission for the longest time, while they search for a donor match. A transplant is the only real cure now.
Some people have been asking about being a donor. From what I currently understand, there are various factors for a match, but your chances are as good as anyone else. In Canada it's done by the Canadian Blood Services "One Match", in the USA it's handled by National Marrow Donor Program. Every country/region has it's own version, and they all work together for the hard cases (like mine).
In the US, it's a simple scrape of the inside of your cheek, it's probably the same everwhere. You don't get to pick who you get to be considered a match for. You might be a match for one person, probably for no one. If you happen to match a bunch of people, they might question your planet of origin.
We're looking for my "genetic twin", so to speak, in a few key areas related to the creation of blood cells. I guess that means B+ blood type at least, but I don't know for sure.
If you are a match, which is rare, then there are two ways to "get the goods".
The first, and original method is juicing you up on pain killers and happy pills while they suck some marrow out of your hip with a big needle. It hurts for about 2 days (big bruise kinda pain). The thing itself doesn't "hurt" but it sure feels weird as they suck. This is the same as bone marrow biopsies I have been though ( I think 5 now ). Your marrow regenerates in about 6 weeks.
The second is they juice you up on a drug that causes your body to produce extra stem cells. After a few days, they hook you up just as if you are donating blood, and they "harvest" your stem cells and then put your blood back in. If you have ever donated platelets, it's just like that. The drug can cause "bone pain", which I have experienced (I have also had the drug), and it feels like the "growing pains" that most of us used to get as kids.
They put the "goods" in a bag, ship it to the sick dude, aka. me, and just pump it into the tubes hanging out of my chest. It works its way to the desired location, they pump me full of anti-rejection drugs, and hope my body doesn't have a hissy fit and freak out.
I just watch on the news tonight how here in BC the organ donor registry is about half the normal of other countries like ours. Remember when it was just a simple sticker on your drivers license ? I bet most of us were all donors then - I was. Then they had to complicate things. Like putting the locks on the patient fridge ( see Sonja's blog).
Not up for it ? Trust me, I totally understand - It's not like I was on the registry before this happened, or even donated blood. Like almost everyone else, it was one of those things I wanted to do, but never got around to. The nurses say it usually takes someone you know to get into this predicament before most people actually hit the "getting" around to it point.
So, if you are still thinking about it, please do it - if not for me, for the other father of two young boys waiting for some hope. I'm not the only one in this boat. (That guilt trip is worth about 50000 air miles - lol)
Don't let the "lock on the fridge" stop you.
Comments
Tracy and Kristi, thanks :)
erica