I went for my checkup on December 1st. Just the usual blood draw, EDSS test, BP, HR, and one other thing I've never done before...
I filled out an application to a special drug program offered by Novartis for clinical trial participants. I had to provide my shipping address and my insurance information. Since I have no insurance that part was filled in with "None".
The rest of the form asked for my doctor to provide prescribing info and I was told the lead investigator would be the one to fill that out.
This form was supposedly faxed off to Novartis the same day and I should be receiving a call on my cell phone within a week or so gathering more info or instructing me on what happens next.
When the details have been all ironed out and I am guaranteed to be on a Rx and know how I'm going to get my Gilenya, then I'll be scheduled to have my Exit Exam.
The exit exam will include a skin exam, eye exam, PFT, MRI, EDSS, EKG, CT, BP, HR and probably a lot more ABCs I can't think of off the top of my head. Basically every test I had to take to get into the trial, I will be taking to get out of it too.
My clinical trial nurse said to expect this final exam (I have no idea how to cram for that) after the first of the year. I have more anxiety about leaving the trial that I had about getting INTO it. I know that sounds crazy, but things have gone so well for me and I have not relapsed in so long that the idea of leaving my comfy cage and exercise wheel behind to just be on my own with a new neuro is scary to me.
I'll be sure to document what happens with the application process as well as the Exit Exam for those of you in the trial who are curious about what happens next.
I'll keep blogging if you keep reading this drivel.
My story of being a hypochondriac, an MS patient, and a guinea pig. NOTE: After 16 years on Fingolimod, I'm starting my self-designed study to taper off the drug while avoiding the now well-documented "rebound relapse" phenomenon. I'll be writing about my journey on SubStack and you can find it here: https://farewellfingolimod.substack.com/
Sunday, December 5, 2010
Monday, November 15, 2010
New Drug Appears To Overcome Resistance In Ovarian Cancer
New Drug Appears To Overcome Resistance In Ovarian Cancer
This is AWESOME news! I hope that clinical trials end up confirming that Gilenya / Fingolimod / FTY720 can fight ovarian cancer better than chemo. How many lives may be saved!
This is AWESOME news! I hope that clinical trials end up confirming that Gilenya / Fingolimod / FTY720 can fight ovarian cancer better than chemo. How many lives may be saved!
Apparently it was just MS fatigue
I've been back on the Estradiol for several days now with no issues. No fatigue like I felt those first few days where keeping my eyes open nearly required toothpicks.
I feel much better now -- back to my old self. That must have just been a blast of severe MS fatigue.
I have been fortunate enough to have been relapse-free for over 3 years now while in this TRANSFORMS clinical trial for FTY720 / Fingolimod / Gilenya and it's extension phase that I sometimes forget how bad my prior symptoms were. When I overdo it and symptoms like fatigue rear their ugly head, I am reminded that I do still indeed have MS.
Sometimes, but not too often because I don't like to dwell on the negative, I allow myself to wonder where I'd be disease-wise if I hadn't had the good fortune of this trial working out for me so well.
Anyhow, fear not the Estradiol. It, nor it's inert ingredients, caused the fatigue after all. Rather old age or MS must have done it.
I feel much better now -- back to my old self. That must have just been a blast of severe MS fatigue.
I have been fortunate enough to have been relapse-free for over 3 years now while in this TRANSFORMS clinical trial for FTY720 / Fingolimod / Gilenya and it's extension phase that I sometimes forget how bad my prior symptoms were. When I overdo it and symptoms like fatigue rear their ugly head, I am reminded that I do still indeed have MS.
Sometimes, but not too often because I don't like to dwell on the negative, I allow myself to wonder where I'd be disease-wise if I hadn't had the good fortune of this trial working out for me so well.
Anyhow, fear not the Estradiol. It, nor it's inert ingredients, caused the fatigue after all. Rather old age or MS must have done it.
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