A very fine specimen, indeed



About two weeks ago, Tim and I drove down to NIH in Bethesda, Maryland to discuss a clinical trial (I will refer to this as CT-1, because it may get confusing from here on out).  I kind of already knew I did not want to participate in CT-1, but we went anyway.  I figured we could get to know the place, meet some people, and have them meet ME.  You know, just in case something perfect for me crops up in the future.  Then they have a face to a name, you know?

It was an interesting experience.  We had to go through security, and Tim had to leave his pocket knife outside of the facility in a hole in the ground.  They went through the bags of toys that I keep in my car for when I do evaluations.  So that was cool.  Once we got inside, I was shuffled around from one room to the next, from one interview to the next, ALL DAY.  Everyone had an accent, and the phlebotomist had the most epic ear hair I have ever seen.  People were nice, and I felt like a very fine specimen, indeed.


Long story short, I qualified for CT-1, but the team there decided it was not my best choice (since, thank God, I am blessed with choices). That trial is working on figuring out the doses of its drugs, and they are currently at “dose level 2”, which they don’t think would do the trick for me.  I thank them for their honesty.

But, they DID put me in touch with a nice Irish doctor to discuss other possible trials (CT-2 and CT-3 [I’m starting to feel like I’m describing Star Wars characters]).  She called us as we were driving home to discuss CT-2 and CT-3.

I liked CT-2.  It involved a single-agent PARP inhibitor, which Dr. Joshi at Hershey was working on getting for me, anyway.  They already have the dosing. They already know it works on BRCA mutants who have breast or ovarian cancer. They just want to see if it works on other BRCA mutants.  Like me.  So, I kind of decided to do the trial.

Then I got the call from Hershey saying my PARP inhibitor had not only been approved…it was a $0 copay (we were expecting thousands $$$$$$$$$).  So I had a decision to make.  CT-2 or off-label PARP inhibitor from Joshi?  I had so many pros/cons lists going on in my head and on paper.  I discussed it with friends and family.  I prayed. And I still didn’t know which was best.  I called and emailed NIH and asked every possible question about the trial.  Finally, here was their response:  “If you have the PARP inhibitor approved and ready to go with your doctor, do that.  In that case, you won’t have to wait 4 weeks to start our drug.  Plus, the off-label PARP inhibitor is already FDA approved.”

So I took my PARP inhibitor tonight.  It’s called Olaparib or Lynparza.  I feel like we should call her Lynn.  So, my first dose of Lynn is down.  So far so good!  I’m not sure what I’m expecting – immediate nausea?  pain?  exhaustion?  fluorescent beams shooting out of my eyes and ears?

The expected side-effects are the usual trouble-makers:  low blood counts, fatigue, nausea.  1% of people get leukemia (but we will constantly be checking my bloodwork, guys).  I did read up on this drug, and people seem to tolerate it well.  Also, it is not really a chemo…so regardless of whether it works or not, I will have a break from poison.  I’m also pretty stoked that it is a pill, so no infusions and fewer trips to Hershey. I am feeling pretty good about the decision, and I have learned a long time ago to listen to my gut.  My gut feels OK about this.  Do your thing, Lynn; do your thaaannngg.

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