Friday, November 23, 2007

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.

2 comments:

Maggie said...

I can't believe how much this entry of yours made me think of my own situation with the Fingolimod. I ended up on it in much the same way. Went randomly on to our local MS website, and there was the invitation to the trials. I met every criteria for the trials, only just as far as required mobility was concerned. Then I found out that the head honcho of the trials center nearest to me was my sister's neurologist that she is so happy with and was always recommending to me. I was also completely at the end of my tether and was praying for a celestial sign, pointing me in the right direction. And I got what I prayed for. I've been on Fingolimod since February, and I cannot even begin to explain how it has changed my life. I am doing things now that I couldn't have imagined if I tired nine months ago. The two relapses that I have treated for since I've been on the trials have been way, way, WAY milder than normal. I wasn't even completely convinced that I should take IV steroids. The only reason I did, I think is because I'm nervous of past experiences where relapses have really taken me down. Anyway, the two relapses were a record (for the last four years, anyway) 8 months apart. I'm hoping to stretch it for at least a year now.
I am so thrilled by how well the pair of us are doing on these trials! I love having found your blog (thanks for the link and the comment) and getting someone else's perspective. Especially as it is so similar to mine! keep blogging, I'm finding it very interesting. Maggs

Buttonec said...

I'm in this trial too. It has definitely been an interesting experience. I never would have thought that I'd become a 25 yr old lab rat, but alas, here I am. I think I'm on the fingolimod as well. I've had no side effects. The only issue was learning how to give the stupid needles. I caused a scene.....more than once.

Glad to hear the trial is doing wonders. Let's hope it goes to market soon. We'll be pioneers.

good luck. stay healthy.

Beth
www.buttonyourlip.blog.ca