Thursday, June 5, 2008

Novartis says FTY720 trial continues despite death

This article was just brought to my attention regarding the serious infections experienced by two clinical trial patients and the subsequent death of one.

Click here to read the full article.

This trial, it must be remembered, is the largest clinical trial for MS patients ever and includes upwards of 1250 patients in the head to head comparison of Fingolimod to Avonex alone. There are several other trials running concurrently and extension phases of prior trials. People die for all kinds of reasons. It doesn't necessarily mean that fingolimod was the cause of, or contributing factor in, the patient's death.

While the news of serious infection and death is not something I take lightly, these are the risks we take when we agree to test out medicine that's experimental.

I know I have personally suffered an increase in UTIs and upper respiratory infections this past year, but nothing that drinking more water and avoiding crowds during flu season along with more rigorous hand washing hasn't kept in control.

There are risks with any medication. The trick is to weigh the risk vs. the efficacy. I still believe Fingolimod will go to market -- they haven't even stopped the trial over this news -- and when it does, we will each have to make our own informed and personal decision about whether to take it (or any other disease modifying drug) or not.

This news scares me, naturally, but my faith in the miracle FTY720 has brought me cannot be squelched that easily.

My condolences to the family of the patient who died. My sincerest thanks for their participation in this trial. It was a noble cause and they did not die in vain. The fact that they were a contributing member of a group who are giving of themselves (and in their case, their very life!) for the greater good of all the MS community speaks volumes about the type of person they were.

I seriously hope it wasn't PML and that it wasn't related to the use of the drug.

Memorial Day marathon

It wasn't really a marathon per se, but for me it may as well have been. How I neglected to report on this remarkable feat before now can only be explained by the need for my brain to block out such memories.

Memorial Day in Palatka, Florida is always the harbinger of the Blue Crab Festival. At least it's been that way for the last 20 years. When the festival first started it was something I always enjoyed and, since I wasn't even 30 at the time and had yet to be diagnosed with MS, never gave a second thought to the amount of physical exertion (aka "walking") that would be required to attend it.

This year, bolstered by learning to hop and run (in short spurts) again, and having a heady, intoxicating feeling that only the Placebo Effect can give you, I dared to contemplate Doing The Festival.

I would take my son who is nine and my granddaughter who is five (no, she's not his kid) and enlist the aid of my sister to head into the trenches with me.

We planned to execute the attack at near dawn, when it was cool and the festival goers were unsuspecting. Turned out 10:30 is when the festival actually got underway. So much for beating the heat and by then all the festival goers were suspecting.

My sister brought two umbrellas so that wherever we ended up we would have portable shade.

The map below is of part of the area that the festival covered. The green dotted line represents my great mood and overconfident feelings of invincibility as we strolled the fair, passing all the wonderful food wagons and seeing all the happy people as we headed toward the carnival rides (the focal point of interest for the kids.)

Where the green line makes a loop at the right of the image is where some of the carnival rides were. We approached a ticket booth and asked where the "kiddie" rides were. They said "most of them are down there." pointing to where my green dotted line ends and the yellow begins.

There's a reason it changed from green to yellow and it didn't all have to do with the heat or my ability to walk. Some of it had to do with the fact that we had walked all that blessed way only to find out that the majority of rides were you-gotta-be-this-tall rides and she was only this tall. As usual, the tickets cost a gazillion bucks but you think to yourself "this isn't all that bad...20 tickets for 20 bucks" only to discover the rides all took 2 or 3 tickets each. To top it off, the only thing my granddaughter really wanted to do was ride the pony but that didn't take tickets; it took another $5. No pony ride.

You'll notice that the yellow line loops back and goes to where we had circled around when in the green mood. This was in hopes that there was a least one freakin' ride that my granddaughter could go on. We found a couple. Whew. That's why it stayed yellow. I was only in a cautious mood.

Then we headed back down to the other end because my son wanted to ride the big slide one last time. Then we got funnel cakes at $5 each and headed back to the truck.

The line turns from yellow to red not because I was angry (which you might suspect from the earlier colors correlating to my moods). It turned red because the yellow should have been a warning to me. My legs were yelling at me the whole time saying "We're givin' 'er all she's got, Captain! I don't think we can hold 'er up any more!"

At the booth while waiting on the funnel cakes and feeling like I was under a steaming hot wet blanket, my legs got wobbly.

Every step from there back to the truck was taken by sheer brute force of my mind telling my legs there was no other choice and they WERE going to carry me back to the truck. All the while holding my son's hand and balancing 10 bucks worth of funnel cakes while keeping an eye out for crazy drivers (and pedestrians) ready to mow me down.

I didn't get to stroll the booths and see all the hand made stuff that people brought to sell me. I didn't even get one of the nifty frog-faced Geico fans that someone was handing out. We came, we walked, we got ripped off by carnies, got a funnel cake (no wait! That still falls under being ripped off by carnies.) and then we went home.

When I got home I was radiating those heat waves that you see on your car hood when it's been in the blazing sun for a while. It took me probably an hour to cool off.

And then I realized something.

I have come a very long way in this past year. Last year I was seriously considering how I would adjust to life in the hover round. This year I was considering activities that brought me back to the land of the normal.

I feel very privileged to have been able to walk, unaided, for all that way, (at least as far or farther than the 500 meter walk for the EDSS) in the heat, with 2 whining kids and a sweating sister who wasn't much happier than I was.

And now that I have done that, I will try to remember why I should stay home next year and sit in the AC. There's nothing I will be missing and I will still have $50 in my pocket...and I won't feel like I just walked a marathon.

I'm giving the credit where credit is due. I bet you are all getting sick of hearing this, but here goes...THANK YOU, FINGOLIMOD (or Avonex, whichever is the "real" drug). I couldn't have done it without ya.

Sorry there are no pictures. It was a strategic decision. Carry the camera? Or carry a water bottle? Water won.

Tuesday, June 3, 2008

If I can wear my jammies and hair combing is optional, then yes, I accept.

For the past week or so I have been a woman obsessed. I discovered Mahjong Connect on the website and it has robbed me of my life in chunks as large as an hour at a time. I have never been a junky of any sort, and my need to play this game is alarmingly disturbing to me.

I watched a show on the gaming channel the other day (I don't even know what the name of the channel is) and it was a documentary all about these nerds who were so into Donkey Kong and breaking the all time record and reaching the Kill Screen, and rolling the score over, etc. I couldn't believe it. I switched it off, shaking my head at what pathetic losers they were to be so serious about a stupid video game. I just couldn't watch any more.

I had to get back to the computer to play Mahjong Connect.

I burned dinner while level 2 got the better of me, again and again and again. In my own defense, the biscuits out of the can never cook according to the directions and the tops were perfectly fine while the blackened bottoms stuck to the pan. And I can't help it that my stove timer's alarm sounds exactly like a truck backing up and I live on a busy street. It always takes a while for it to dawn on me that my dinner is probably in flames and that's what that noise is. My dad always said: "When it's smokin', it's cookin'; when it's burnin', it's done." (Why he had to say something with so much punctuation is beyond me!)

So tonite when I was reading my email and I broke out into an I-can't-believe-what-I'm-reading, joyous cacaphony of racous sounds, it was only natural that my son yelled "What did you do?? Make it to Level 3 finally??!!" He came running to share in the momentous occasion.

"No, it's better than that! I got an email from a guy who used to teach at Harvard and has a wellness website who read my blog and wants to feature me on his website!!"

His shoulders slumped and he headed back to his Xbox 360. "Oh. Call me when you get to level 3, okay?"

Who knows. Perhaps my misplaced excitement is better reserved for just that achievement. My nine year old may be smarter than I look.

Out of curiosity and (naturally) the need to brag to someone who might actually care, I wrote to BrainCheese to tell her about the letter. This was after Googling the good doctor and visiting the website to make sure everything was on the up and up.

Good news is, there is a guy who fits the description of the author of the email who was a teacher at Harvard and is associated with the wellsphere website. Bad news (well, not that bad, but made me feel less "special") is that Linda got the same email, albeit with her site mentioned in place of mine in the letter...I'm assuming.

So the doc is trolling for bloggers to fluff out his site. Is that so wrong? Probably a good business move. The more relevant content, the higher his site will rank.

I was all set (before Linda burst my bubble and told me she got the same letter) to barter for an honorary degree from Harvard and, of course, medical insurance. Looks like that's out. DRAT!

Anyhow, anything that could take me away from Mahjong for even a little while is probably a good thing in the long run.

As long as I don't have to change what I do or when I do it or how I do it...I'm all for fame and glory.

Glad to see someone finally recognized my well hidden jeenyus. can all say you knew me when.

Mr. DeVille, I'm ready for my closeup! And I'll take that Academy Award now, thank you very much.