Monday, July 28, 2008

Grand Finale Time

Cue drum roll please....

We must ask those of you in the audience to give us complete and utter silence as this next feat will take the utmost concentration.

Well, I feel like I've been a circus act since I've been in this trial. Working without a new, tight rope act, but mostly clowning around. I'm not going to see how many people come out of my car when I open the door tho. I have to draw the line somewhere.

The Grand Finale that I speak of is my Visit 10. My one year anniversary, and official end of the clinical trial, is August 20th, so I have been gearing myself up for moving on to the extension phase where there will only be pills and not shots (SQUEEEEE!!!)

I have been counting down and Monday is Shot Day. When I took my shot today, it was #4 in the count down to needle freedom...with 3 left to go.

After I did my shot, the phone rang. It was the study coordinator saying she's scheduling my visit 10 appointments. Due to the large number of tests that have to be done for the Grand Finale, she wanted to know if I'd like to split it into 2 visits or just make it one long day.

Then she told me she had my Pulmonary Function Test scheduled for August 5th at 9am and my eye exam and OCT for 1:30 and 2:30 (that same day) respectively. So if I don't have anything else scheduled that day, AND they get me in on time for my appointments, I will have to leave my house at 7am and not get home until 5:30. I told her to cram a few more tests in for that day since being poked and prodded makes the time go faster than reading magazines in a waiting room.

Then I asked her about Aug. 20th.

"Do I have to come in on that very day since it's my 1 year anniversary date."
"No. The tests that we are scheduling for the 5th and whichever other day I can get the remainder of your tests on will complete your Visit 10."

She said that my MRI films and other test results will be sent to Berlin (huh? I didn't bother asking why) and that with Novartis' approval I may end up entering the extension phase a few weeks early.

It took a few beats. Sometimes I'm not so quick on the uptake.

When it hit me I squealed in the poor lady's ear.

"YIPEE!!!! You mean I may not have to take the rest of these shots?? Next week's might be my last one??!!"

She laughed at my enthusiasm and said "Yes, that it correct."

I'm one happy camper.

Staying true to hypochodriacal form, however, my next question was this:

"Hypothetically speaking, IF I were on Fingolimod now, when I enter the extension phase is there a chance they will change my dosage? Or will they keep me on whatever I have been on, IF I've been on it?"

She knows what a worrier I am and knew what I was thinking...I'm going to freak out.

"You will remain on whatever dose you have been on for the last year, or you will begin Fingolimod for the first time. We don't know which. BUT, IF you were on it all along, the dose you will be on in the extension phase will be the same."

She knows how to calm me down, bless her heart. I wonder if the other patients have been such wussies.

So, today I celebrate! Maybe I'll have Dairy Queen for dessert tonite. I deserve it. Plus, I want it and have been waiting for a good reason. Looks like as good a one as any.

So far, to date, I have missed only 2 pills (both times I was out of town with my mother and sister when I remembered) and no shots. I can't say I was ever that good about remembering my shot when I was on Copaxone.

But I have a routine. I take the pill at 9am rain or shine. 9am has become ingrained on my brain as a time when I should suddenly freak out that there's something I should be doing. When I realize 9=Fingolimod, I take my pill and (almost) never forget. The results I've gotten are a added plus that helps me remember.

I wake up every morning knowing MS is with me. And then I take my pill, and then I say a silent prayer that I have been one of the fortunate ones who has done well in this trial and been able to live a relapse-free life for 14 (or 15, I lost track) months now. I am truly blessed.

So this concludes my show for now, hope you found it entertaining.

I'll post back when I go for the visit 10 appointments as I sure there will be some fiasco that I could spin into a funny tale for you. Got to keep you all entertained.

And we still have the extension phase. :-)


  1. Make sure you don't abandon us! Some us have two year trials (but no shots).

  2. Hehe...since when did anyone EVER need an excuse to eat Dairy Queen ice cream??? Not I, I say...

    Well whoopdi happy doo! But we really have to wait a YEAR to find out if you've been getting the darned stuff? Fine...whatever...I'm not a patient person...seriously? ANOTHER YEAR?!?!

    Linda D. in Seattle

  3. Ahhh... it really is a great thing to stop the injections! I don't miss them one bit! :) Congrats to you!

  4. All good thoughts and a prayer just said :-)

  5. congrats on the no shots. and ditto Linda, Dairy Queen anytime.


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