Monday, January 31, 2011

It's finally over!

Wednesday and Thursday (the 19th and 20th of Jan.) were a blur of testing. Novartis wanted things wrapped up for the TRANSFORMS trial by January 20, 2011 and the folks at my location were giving it the ol' college try.

Wednesday I had my final dermatology exam and as usual I came away with a bandage on me. I have suspected since my very first visit when 3 beauty marks I'd had all my life remained behind in a specimen jar (or on a slide or whatever they do with that stuff) that this was a money making proposition. In the four visits I'd made to the facility, I lost 5 moles and one angiolipoma. None of them were anything to be worried about.

As if to confirm my suspicions, when the new doc (from the same group) couldn't find anything remotely suspicious to cut off, he reviewed the clinical trial paperwork they'd been provided and said "They'll pay for up to 3 removals per year... is there anything you want removed?"

Instead of explaining to him that technically that was supposed to only be IF the moles looks suspicious, I just pointed to this gigantic mole on my neck I'd had all my life. I'm sure it's the cause of my early-onset low self esteem and I decided with my birthday looming I'd just go ahead and treat myself.

He said "you've got 2 more coming for free... anything else?" When I shook my head he turned to his nurse and said "Just numb her up for that big honkin' one then."

"HONKIN' ONE??" I asked. "Is that medical terminology?"

Ah to be the brunt of a funny joke! Anyhow, to make a long story short, the big "honkin'" mole is gone and in it's place is a big honkin' scar. Oh well.

Next day I had my EDSS test and had to deal with the recorded man asking me to add numbers. This time I ACED it. Not a single wrong answer. Just the way I'd planned -- to go out on top.

I also had a PFT, EKG, bloodwork, eye exam and a MRI that day to wrap everything up.

When it all was over, I gave back my last 3 bottles of trial medication however wistful that I would like to have kept one for a souvenir. In return I was handed my first 30 day supply of the commercial version!!

I applied to their assistance program and qualified to get my Rx FREE for a year. After that, I'll have to reapply. As long as I stay indigent like I've been all my life, I'll be okay. What a plan.

If I win the lottery, I'm screwed.

Anyhow, it's been a long strange trip and I am so very grateful to have had the honor to be a part of it.

If you want to keep reading I'll try to remember to blog, but it may just be about me and not the drugs now. I'll keep reporting how I'm doing but since the trial is over I won't be blogging my checkups.

Thank goodness because the dermatology group would have whittled me away to nothing before long.


  1. 'that big honkin one' ! Sheeshka.
    What a shame 'they' don't allow you to barter your 'three free cuttings' for a pallet of pills...

    Thanks so much for your updates on life on the trial ... and unlike Novartis will still be much interested to hear how things continue to travel for you.

    muchos gracias

  2. I would be interested in reading a recap of your progress with the drug i.e. what you were like (physically and emotionally) before you started and how you are now.

    Kudos to you and thanks for dedicating yourself to helping fellow MSers. Fondly, another guinea pig.

  3. I just found your blog recently and would love a recap of the experience in one post if possible too!

    My husband has MS and we're thinking about Fingolimod as it becomes available too. He's currently on Rebif (and was on Copaxone before that).

  4. OMG, you had me crakin' up. As an actual hypochondriac, I enjoy humor that is self-effacing and laughs at medical exploits. Thanks for the laugh. I totally needed it tonight.


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