I found Greg House's Cane!

Okay, so I said I was only blogging about the trial, but this was too much fun to pass up. There was a thread on MSWorld.org about how people hate the stares that come from having to use a cane. Personally, I don't give a rat's arse what anyone thinks and if they stare that just means I must be interesting which is a sad statement on their OWN lives. HAHAHA

Anyhow, having used a cane quite a number of times in the past -- usually with every flare -- I have often thought I would like a nicer one than the utilitarian silver one that I've got. I'd never get rid of it, tho, because that cane was my father's and when I am using it and have my hand on the handle, it feels like we are holding hands again. Plus it's got his "I Voted!" sticker on it still from the last vote he cast. He never did find out who won because that was the year of the Hanging Chad. He died before the recount was finished.

But I digress. I have seen people with cool canes, but I can't for the life of me find any. Today I googled "stylish canes" and hit the jackpot. Apparently googling "cool canes" wasn't getting me the same results. You really have to have a diverse vocabulary to google stuff with any finesse.

I visited Fashionable Canes and hit the jackpot, finding Doctor House's (Hugh Laurie from the show House on FOX) cane with the flames on it. Woohoo!! Ever since I saw the episode where he found the Flame Cane in a head shop, I've wanted one. For $27.95 plus shipping, I just may get one, too!

I figure it this way: If we have to have these things as extensions of our being in order to totter through this life, why not make a statement?! The flames hit my funny bone so hard that cane just screams "me!". The only other thing I'd want to add is a wheelie bar. :-)

At least if I had that cane waiting in the wings to make its debut, it would make my next relapse (not that I plan on having one) something to look forward to.

Where FTY720 (Fingolimod) comes from

I knew from prior research that FTY720 was derived from a fungus that has been used for centuries in ancient Chinese medicine, but today I actually stumbled across an image of the fungus. Thought it would pique your curiosity to share it with you:



It's not much to look at and truth be told, I am so glad they figured out how to encapsulate the good stuff and put it in tiny pill form. I would hate to try to gag one of those down every morning with my decaf. Ewww. Actually, to be more accurate, they figured out how to synthetically reproduce it, so I don't think there's a laboratory growing fungus somewhere to keep all us trial patients supplied with pills.

An interesting read is found on the page I got the image from:

http://botit.botany.wisc.edu/toms_fungi/jun2006.html

Local coverage of Fingolimod (FTY720)

I'm on an email list for an MS group spearheaded by my neurologist at Shands Jacksonville, and today I got an email with a link to a local news story about the clinical trial.

It was interesting to see another patient who's going through the same thing as I am and even better to see that he's receiving great results.

Here's a link to the story. I tried to embed the video but I'm no geek and kept getting errors. At any rate, my neuro (who's also my hero) is the doc in the video.

Click here for the video and story.

Fingolimod Christmas

Twas the night before Christmas
and all through the place
not a muscle was twitching
not the ones on my face

The numbness was gone
From my old achy calves
And I didn't take any baclofen,
not even halves.

I in my jammies and my
boyfriend in tow
had just settled in to watch
our favorite show.

When what to my wondering ears
should I hear
But my neuro's voice chiming into
my brain loud and clear.

"No Copaxone, no Beta, no Avonex now,
No Rebif or Tysabri for you, holy cow!
You'll make it on FTY720, you'll see...
You're nigh seven months being relapse free.

As dry leaves before a wild hurricane fly,
My pills swirled up, up into the sky.
Only to rain down around me in piles
Guarding my body from MS all the while.

Okay, so I'm making that part up,
it's true,
But I just can't believe this stuff
won't be approved.

Without one small twitch
of a side affect showing
I share with you on Christmas Eve
My spirits a-glowing.

If an oral medicine helps
slow the MS beast,
Then upon Fingolimod soon
we'll all feast.

To the top of my soap box,
to the top of the wall,
Now stay right behind me
and cushion my fall.

As I come back down dizzy
and legs all tuckered out...
I yell "Merry Christmas!"

and go back inside to drink a cup of hot chocolate, ponder why I haven't gotten the packages wrapped and why I have sat here at the computer so long writing some stupid poem that doesn't even follow the original correctly and makes no sense...

And now you can wonder why you bothered to read this.

Merry Christmas!!

Passing the four month mark

Yesterday marked the fourth month since I spent the day getting Randomized in this clinical trial of Fingolimod. That's one third of the way to completion and I'm already feeling wistful about the possibility that perhaps it will not win FDA approval for some stupid, unthinkable reason.

In the past Copaxone was my pacifier. Knowing I was taking my shot and doing all I could to ward off the MS boogie man. But the boogie man figured out that he was impervious to my Copaxone sword and he raised his ugly head repeatedly. Then I had to spit out my Copaxone pacifier (figuratively speaking) and reach for the bigger gun with heretofore unknown powers: FTY720.

Since brandishing this new shiny weapon the MS boogie man seems to be left scratching his head and laying down for a nap with seemingly one eye open just in case I put the weapon down and he sees a angle of attack left open.

I want this drug to be the Cloak of Invisibility or Invincibility for me and all who shall one day come to take it. I know there are lots and lots of MSers out there who have endured this disease longer than my single digit battle (9 years) and have lived through times where the only answer to the question of "What can be done?" was "nothing." Those people have my undying admiration... to have made it thus far and lived to tell the tale is a feat that I cannot imagine.

It's strange when you have a chronic condition from which there is no respite. You can't help but wonder what is in your future. Even though I have no immediate outward signs of disability, I think about what might become of me quite often.

The other day, my kitten hurt her paw. She put it somewhere she shouldn't have and ended up in pain. I don't know quite what happened, but she spent half the day limping. Other than the limp, she was the exact same kitten she's always been.

That got me thinking... how fortunate animals and small children are. They don't have the capability of pondering their predicament. They don't spend their time dwelling on "will this get worse?", or "what will I do if it does?". No, they seem to adjust beautifully to their new reality and move on.

I want to be like that. I want to move ahead, never look back, and face whatever becomes of me with an attitude of "I can handle this!" It would be a true blessing if I could.

I hang onto the positive notion that these drugs in clinical trials are going to work miracles for us all.

Have a wonderful holiday season....

I'll see you next year.

My therapist...

Thanksgiving wish

I know I'm a day late with a Thanksgiving message, but I was doing what I was supposed to yesterday -- enjoying family. I hope everyone had all they wanted to eat and that they were able to spend time with the ones who matter most in their lives. I did.

This year there are many things that I am thankful for. This clinical trial is very high on that list. I remember when I received my MS newsletter that had an article about the "upcoming trial" in their research section.

I read the article and it stated that FTY-720 would be pitted against a currently approved MS therapy. I was soooo hoping it was Copaxone that they were testing against. During that same month I got a flyer announcing that we would have a guest speaker at our support group meeting. The guest speaker would be none other than my brand new neurologist whom I had yet to meet.

I had lost my previous neurologist who had been with me since diagnosis after he had a stroke 2 years previously. When I learned that the man who would soon become my new doctor was going to be guest speaker, I felt I was destined to go. I took the newletter with the info about the clinical trial with me.

During his speech he got around to discussing his excitement over all the new drugs and treatments in the pipeline. He took the very same newsletter out of his briefcase and passed it around for all to see -- with the section about the FTY-720 trials highlighted. I raised my hand and asked what drug they were testing it against and the answer was the biggest letdown I had felt in a long time. "Avonex", he said.

I didn't ever want to take an interferon. I had heard horror stories about the side effects. Who wants to spend 3 days a week having horrible flu-like symptoms, not to mention the suicidal warnings about it? Speaking strictly from a position of one who has no experience with interferons and is terrified of any new drug, I thought "No thanks, I'll pass."

During that time I was walking with a cane and in the throws of an unrelenting relapse. I was miserable. I had to call the MS clinic and beg them to get me set up for a local IV infusion of high dose steroids to calm the flare because I just couldn't take the symptoms any longer and they didn't seem to be getting better.

A couple weeks later I saw the neurologist finally. He's a very busy man and seemed rushed. In his no-nonsense way, he noted that I was in the middle of a relapse and asked me how I thought the Copaxone was working for me. I had to admit that I guessed it wasn't. We discussed switching me to a different disease modifying drug. I burst into tears and said I didn't want to switch to one of the only alternatives which are all interferons. So, he suggested the trial. He said the beauty of it was that I had a 2/3 chance of getting the FTY-720 instead of the Avonex, but that either way I would be on SOME kind of drug that would surely work better than the Copaxone had been.

After hemming and hawing and meeting with the recruitment nurse, I finally signed on. That first day (Randomization Day) where I got the initial dose of the medicine was one of the scariest days of my life. I was so sure that, with my luck, I would get the Avonex and be miserable.

Now, 3 months into treatment and 6 months since the start of my last flare, I can honestly say that I thank my lucky stars that everything fell into place for me like this.

I'm not a church-going, bible-thumping kind of gal, but I do believe in God and that He listens. I look back on that time, floating in a sea of terror without a neurologist to throw me a life line, and I remember praying. I don't think the chain of events: getting the newsletter, having my new neuro speak at the MS meeting, or being invited to join in this study (for which my neuro happens to be lead investigator) was anything short of divine intervention.

I think He knew I couldn't take any more... and he threw me a life raft in the form of a little brown capsule called Fingolimod. Have I mentioned how thankful I am?

My Thanksgiving wish is that FTY-720 gets approved and all people with MS can have the choice that's been given to me....with the kind of results I have had.

Happy Thanksgiving to you.