Wednesday, June 24, 2009

My own personal update in the FTY720 TRANSFORMS clinical trial


I just posted about the newest findings that kick butt about FingoHeads from the Phase II trial being still relapse free after FOUR YEARS (standing ovation for them, please) but I thought I should throw in my own two cents about my experience thus far.

I started in August 07 so that means I have been in this clinical trial for
this long (according to www.wolframalpha.com )


During this time I have never officially had a relapse, although I have informed my trial nurse at least 2 times that I remember that I thought I might possibly be having one.

And lately I have been having not so much of a relapse, but just a recurrence of oldies but goodies. For instance, my legs are doing that fire and ice thing again where my calves feel like they are burning or really cold. The other night they cramped up really badly, too. I remember both of these symptoms from the very last bona fide relapse I did have -- the one from April of 07. It was much more pronounced back then. After having just a taste of it lately I wonder how I made it through life back then where I was in a constant state of misery.

These latest symptoms are only cropping up lately because I'm trying to do too much, or getting myself stressed out, or not getting enough sleep, or a combination of all of them.

They really started right around the time my son was going to graduate from elementary school and I realized he's growing up despite my efforts to keep him forever young so that I, too, shall be. With all the end of year parties, and then the HSV attack which led me to the GYN only to find out I need that ultrasound of the ovarian cyst and getting reprimanded about ovarian cancer, and then over working myself, etc. etc.

Well, these symptoms are like some sort of divining rod or something. When I have all the right circumstances, my legs start to burn and I get that buzzing down my spine and everything starts cramping up. All as if to tell me, "hey now! Take it easy!!" I don't find water, but I do find my body needing rest.

Once I've had a good night's sleep in my recliner (I've been sleeping there for 2 years now [possible Fingolimod side effect alert!!] and, try as I might to go back to a real bed, I just can't do it) I feel all better.

When I tell the trial people about these "almost" relapses, I am asked to grade them on a scale of 1-10 as far as severity goes. It's always been a 1, or 2 at the most, so they end up conveniently forgetting that I called. Nobody ever really checks it out to follow up with poking/prodding/testing to verify whether or not there is disease activity.

So, while the news I posted in my last blog entry is GREAT, I just wonder how many of us have actually had some form of a relapse that went unnoticed.

I still proudly say that I am relapse free after more than 2 years (since April 07) but sometimes I wonder if that's really the case...

Or maybe I'm just being true to my hypochondriacal self?

Only my hairdresser knows for sure. (for your younger people, that's a Clairol commercial from the 70s I think).

I'll have to ask her next time I see her.

1 comment:

  1. I think that symptoms coming and going are normal. I am on Tysabri and have the same experience despite the fact that it has helped me tremendously. Enjoy the good days!

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