Maybe I’ll Glow In The Dark

Two weeks from today, I will be in a full day of testing, scans, etc…..Round 1, NIH trial, day one.

It’s hard to think back to two years ago, when I first learned of the lung involvement, and see how slowly, yet quickly the wheels turned that led to this trial.  Consider this one huge update and information overload to those following my crazy lung/RRP saga.

I’m in.  Patient number nine of twelve.  (Remember that number, as one day, I shall be the famous “patient 9” in medical journals.)  I’ve done all of the background testing, medical record reviews, medical review boards…and my case is accepted.  I will be starting a trial using Avalumab (Javelin-Merck) in an effort to shrink or eradicate the pulmonary involvement, tracheal involvement and laryngeal involvement of the RRP.  Goal is cure….a lofty goal.  One no one in our community has yet seen come to fruition.  Remission, yes.  Cure, no.

It was, and still is, something I struggle with….I’m going to be taking infusions of a drug, not even yet on market, to attempt to prevent my pulmonary from killing me…and an attempt to reset my immune system to fight the virus that causes RRP…resulting in a cure.  A drug currently reserved in trials for Stage III and IV cancers.  A drug that could throw me into serious medical conditions such as diabetes one, Addison’s, liver issues, etc….a drug where the cure/treatment could end one disease and cause another.  Yet, here I am…ready to go.  Pulmonary RRP is seen as an outcome of RRP with a very poor prognosis.  I’m charting patients that we know of, and it’s about 50/50 on who survives.  I have multiple areas of concern in my lungs, as well as extensive tracheal involvement.  I am just about a worst case situation….but with no known conversion as this time, I still have options.  This is the option that I have chosen.

For those following, this is what I know of now:

I fly out in two weeks to the NIH in Bethesda, Maryland.  Day one is testing and more scans.  Day two is apherersis (something I am not looking forward to).  Day three, I go to the OR for biopsies and mapping.  (again, not looking forward to this)  Day four, infusion day.  Day five, released if no side effects greater than Grade 2.  (Automatic trial removal if above Grade 2.)

Repeat above two weeks later.  One of three outcomes at this visit.  Eradication of disease, no change or greater than 50% change.  To remain in the trial, I need at least a 50% change at the second visit.  Eradication would be a miracle, so I would certainly take that…but no change…that’s what we don’t want.  If I remain in the trial, I’ll come back two weeks later for just an infusion, then back two weeks from there to repeat week one all over again.  The longest I will remain in the trial is 18 weeks.

So, expect Zombie Kim for a while.  I’ve already made the announcement that travel for the foreseeable future isn’t happening.  I expect huge stares from folks in economy on flights as this walking test tube grabs her seat.  I may or may not shower for those flights…depends on if I decide my fellow passengers are worth the effort/energy.  If I happen to sit by you, just spray some perfume…it will all be ok.

Now, I want to share this.  We all complain about taxes…a lot.  YOU…your taxes are part of the reason this trial exists.  So, thank you.  Thank you for helping to make this trial possible.  This is a government funded trial at a government facility.  Without YOUR tax dollars, this facility would cease to exist and so many trials that lead to cures for so many diseases would cease to be in progress.  RRP gets little federal funding for research..it’s an orphan disease, so it’s not exactly a high priority.  For us to have a federally funded trial such as this is nothing short of a miracle.  Mass General has a trial now too, but it’s pharma funded and backed by Mass General.  Super, but less dependent on federal tax dollars.  So, again, thank you.  On behalf of the entire RRP community…we thank you.

I’ll post as I can regarding each day of the trial….if I begin to glow in the dark, I’ll take pictures!  If I turn into the Hulk, well….I have a few folks I need to visit, then I’ll take pictures.

So, peace out.  Support the sciences.  Support research.  One day, it could be you that needs the treatment or cure that came from scientific research in our medical community.

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