Holy Moley, what a week...
It has been BUSY this week, folks! I've managed to go yet another week without writing anything, even though I've had lots of stuff going on and ideas flying around my head.
Couple things on my mind today:
Dog pictures: I didn't manage to take any photos of Rennie with her new hair-do. I have no good excuse for this; I'm just lazy. And also, my camera is crap. I will say she doesn't look as bad as I'd feared - she actually looks pretty cute with her new "do."
One of my aunts has been grooming dogs for years, so tomorrow I'm taking Rennie over there to see what I can learn from her. The bonus is, I get to eat hamburgers and baked beans and other BBQ-type food as my aunt's having some kind of gathering thing.
One thing I know for sure, though: I need one of those arm thingies for my grooming table with the little collar hanging from it (eerily reminiscent of a noose) to keep the dog from running off the table. And possibly clipper blades designed for pet hair, cuz Rennie's hair is just too fine (or dense? Or... weird? I'm not sure...) for the blade I have on my clippers.
Public Speaking: Writing has always been something that comes easily to me, whereas speaking in front of groups causes me to completely lose my shit, freeze up and babble incoherently. I typically do okay if you hand me a flute or sit me down at a piano in front of a group (assuming I've practiced a little bit), but make me talk in front of people? No can do. I stink at it.
As I've mentioned before, I've been going to Toastmasters meetings and as part of this I've given short, 1-2 minute impromptu speeches (and I've lived! Every time! Seriously a miracle.) But last night an idea sprung to mind and I actually started putting together my first speech! It's quite amazing how this works, really: you put your name down to give a speech at a certain time on a certain day and - lo and behold! - inspiration strikes!
The first speech is called the "ice-breaker" speech, which means I have to talk about myself for 4-6 minutes. Well, as everyone knows, people are not just one-sided automatons and I am no exception - however much my blathering on about my dog might lead you to disagree. There are a variety of angles you can take with your first speech and the objective is to get yourself speaking in front of people in order to learn what your strengths and weaknesses are. (Hint: my weaknesses include an inability to form thoughts and/or communicate them while in front of other people. And also, I say "um" a lot. Apparently.)
Um...anyway: my first speech is scheduled for Thursday, August 28, and so far I have an opening anecdote! Huzzah! I will be brilliant, I am sure. After all, I have 27 days to prepare the remaining 5 minutes and 30 seconds. (Wish me luck!!)
Tysabri: I got an email from a reporter at the Boston Globe this morning asking me if I'd be willing to be interviewed for an article on Tysabri. If I'd been home today (I had to go into the office to interview a couple of potential new hires) I'd probably have gotten the email and spoken to the reporter but as it is, I got home around 9 p.m. eastern time; far too late to make his deadline. I responded to let him know I'd be happy to talk to him if he was working on a follow up article to this piece, which posted today: Biogen: 2 patients get brain disease.
Bad news, my friends. Bad news.
Bloomberg, the Associated Press, and BusinessWeek also have stories on the topic. Looks like Biogen/Elan are not planning to pull Tysabri from the market as yet, according to the reports.
So what does this all mean? I'm still not entirely sure and, like most things, I'll be taking a wait-and-see approach for a little while. In thinking about my own treatment, though, here's what I'm going to be weighing:
1) There's a very real but still moderately low possibility of contracting PML (especially given both these two patients were using it as a mono-therapy.) General consensus seems to be that odds of contracting PML while on Tysabri were about 1/1000. I did a little bit of poking around just now and ran across this diagram. According to this chart, the odds of a person dying from heart disease (1/5), having a stroke (1/24), as the result of a fall (1/218) or by getting hit by a car (1/626) are all greater than the odds that someone would contract PML.
Something to ponder: walking out my front door (or, indeed, eating a cannoli and clogging my arteries) is still more dangerous than taking Tysabri.
2) The drug is more than twice as effective as the other available "first line" drugs: Tysabri has been shown to be ~67% effective at reducing relapses and disease progression, versus 30-ish percent for the CRAB drugs.
3) Given that my MS is still in the fairly early stages, my goal is to keep myself as symptom-free as I can and delay disease progression as much as possible. The better the drug I'm on, the more likely it'll be that I stay symptom-free.
4) I have a really hard time tolerating the other drugs. Now that my thyroid problems appear to be back under control I probably could tolerate the Copaxone again, but the interferons? NO THANK YOU. Those drugs are just awful. Blech. And even the Copaxone involves daily injections accompanied by itchy red welts. Compared with the Tysabri, which makes me tired for about a day and then I feel great, there's almost no comparison!
So for now, as long as my doctor is okay with it, I guess I'll be staying on Tysabri.




Comments
good luck with the speach, i'm sure you'll do just fine!
i'm off to the movies today - hopefully not as bad as happy feet, but i'll let you know :)
have a good weekend zee, xx
Posted by: sara | August 2, 2008 02:31 AM
i freaked out yesterday -- friday at 4:30 pm -- when i got a call from the infusion center telling me my doctor cancelled everyone's tysabri prescriptions because of the news and my appointment for monday was cancelled. they said i had to go see my doctor and get a new prescription.
i wasn't freaking out because of the cases of PML, i was freaking out because i had no idea when if ever i'd be able my tysabri infusion.
i actually managed to get an appointment for monday, and heard that they weren't pulling tysabri off the market, so i'm a little better now. i guess i just have to convince my doctor to keep letting me take it.
so i guess you know my view on it. the ironic thing is that i probably have a better chance of dying in a car accident on the way to go meet the doctor to talk about tysabri than i do from tysabri.
i don't see how the risk is 1/1000 when like 50,000 people are on tysabri so in my bad math that sounds to me like i've got a 1/25,000 chance of PML.
but anyway, i don't care. i'd want to take tysabri even if the risk were greater. i don't want to die, but i'd rather die of PML than become incapacitated with MS. and i think i have a better than 50% chance of that happening before i'm 50 years old if i DON'T take tysabri.
my mom died at age 52 of a stroke. she had all kinds of health problems that would have made her life miserable had she lived a few more years but she was having fun at a friend's house, got a headache, lost consciousness and never woke up. this may sound sick, but i envy her. i don't want to die at age 52. but given the choice between dying suddenly at a young age and dying at 80 after a decade of pain and suffering and immobility and so on, i'll take dying young.
Posted by: jen | August 2, 2008 05:04 AM
Good luck with the public speaking. If they do pull the Tysabri maybe you can just go drug free and take good care of yourself.
Posted by: Nadja Tizer | August 2, 2008 11:28 AM
I'm pretty much on the same page, Jen: it's scary to think that these folks got PML even with the precautions in place, but it's still a pretty slim chance when you look at the big picture. My concern with the PML is not so much the dying as the becoming permanently, catastrophically disabled. Like you, I'd rather die than be totally incapacitated and dependent upon others or a machine at age 32. And for me, Tysabri is the only drug so far that hasn't made my life more miserable.
So there we go, I guess.
Posted by: Zee
|
August 2, 2008 11:28 AM
I'm with you on this one, Zee...far be it for me to panic over this when there are soooooo many other areas of my life that have a much higher percentage chance of death. Like driving or even my job, for goodness sake! I imagine sometimes that I'll probably die being chased by the mentally ill...then I come to my senses and KNOW nothing that dramatic has ever happened in my life. No, I'll probably croak sitting on the toilet!
Linda D. in Seattle
Posted by: Linda D. | August 4, 2008 01:22 AM