Anti - PD1 is working???????

The trip to Tampa on Thursday was pretty easy. The traffic to Atlanta wasn't too bad, Brent only grabbed at the ceiling and stomped his special, invisible brakes a few times. No scanning was involved at security.  We shared a really delicious tapas dinner at Columbia.  Brent was even seated such that he could see the dancers (Ruthie and I had seen them before, but he hadn't) so it made it quite a fancy date. I had sangria and he tried their mojito...but his are much better!!!!

Up at the butt-crack of dawn again to make our 0700 visit to the research unit.  All the old peeps were still in place, a gentleman ahead of us jokingly said he felt the scale was reading incorrectly, so I told him, if there was an error, he could certainly blame Sam!!!  Who...was just the same...asking, "What's this on your arm, Helen?" "Well, Sam, that's a side effect of the treatment."  "Ewwwwhhhh!", Sam replied.  What can you say about Sam????  But, our luck held and there was Jackie...the wonder nurse!!!  She's just the best!  IV done, easy peasy, tons of lab drawn and off to see the Weber!

Once there, he was pleased with my scans and actually impressed (extremely) with my vitiligo. (Jackie had already told us that a few of the patients in my group were developing it and that..."It makes Dr. Weber very happy.  His bow tie actually starts to spin around, I think!") He said that "some" of the patients in my cohort had developed vitiligo and that it was "a very positive prognostic sign".  (This would be because, theoretically, if the T-cells are killing off the melanocytes that give color to your skin, they are also killing off the melanocytes that are nuts and are involved in melanoma.) He implied that mine was more than he expected on my back and it seemed that I was the only patient he has seen with significant vitiligo on the legs.  (He had his tech actually take pictures!!)  He went through the usual questions about activity and energy level.  When I told him that I now run 3 miles three times a week and do an "INSANITY" workout once a week...he just looked at Brent, puzzled.  "It's not really called 'insanity' is it?" The clinical nurse coordinator was there as well, and she just started laughing.  I told him, "Yes, it is!"  He asked, "But, what do you DO?"  As I tried to explain the cardio workout and the push-ups, he said, "You do as many as 100 push-ups?!!!"  "Well," I said, " in some of the work-outs...but only about 40 in a row."  Brent interjected..."And they aren't 'girl' push-ups either!"  Anyhow...after we got through all that, the bottom line was that he felt that I was doing really well...as were most of my cohort, with no one currently enrolled having had a relapse in the past 6 months. He also said that there was a patient in the metastatic disease group who was experiencing vitiligo  with concomitant regression of many of her existing tumors.  SO......  He also said that he felt that this drug was showing great promise and that the drug company "really needs to get serious about it"!

The infusion went just fine and I got to sit in a chair!!!!!!!!  Brent didn't seem to grasp the wonder of this...but it is SO much more comfortable...and NO injections!!!!!!!!!!!...which certainly made things a lot less painful and the experience much more abbreviated!!!!

So much so, that Brent and I were able to get a much earlier flight!  We got to the airport at about 11:40.  I asked the man at the desk if it was possible to book seats on the 2:30 flight, rather than the 5pm flight we were scheduled for.  He said, "You can have seats on the noon flight. It's wide open."  I said, "No, I don't think we can make that one."  He said, "You can, if you run!"  With that, Brent takes off like a crazy person...in the WRONG direction.  I yell at him to follow me and we're off....  We make it through security with only Brent being scanned.  He throws on his wee little shoes, not even tying them, and takes of like a bat out of hades....IN THE WRONG DIRECTION...AGAIN!!!! I get him turned around and we're off, like crazy people, to the gate as the big announcer in the sky is saying, "All passengers for the flight from Tampa to Atlanta should be boarded now!!!!"  B is sweating, we rush to the desk, the attendant takes our boarding passes (the other guy didn't bother to take the time to print new ones, just saying he would put us on that plane) and tells us, "Oh, you're for the 5pm flight."  Seriously, lady?????  We just ran up to you like maniacs at noon for the 5pm flight!!!!  We tell her we are listed for this one.  She punches around on her computer and sees that indeed we are and lets us board.  The flight is fine and we are seated together.  We get to Atlanta before 2pm and are able to shop at De Kalb Farmer's Market for stuff for us and Rose before we meet her around 5.  She gave us a great tour of some areas of the campus that were under construction last year, including one with a living rooftop garden where she gets to eat her lunch with a beautiful view of the Atlanta skyline.  It was fun and a little later we were off to dinner with her and one of her friends.  It was so good to have some extra time with her!!!

So...Friday felt great, with no horrible aching legs.  Although, I had persimmon mouth by the time we boarded the plane.  By Sat morning, though, there was no running, no push-ups....my arms and legs felt as though they weighed a zillion pounds a piece and my wrists, ankles and knees were really achy.  The fact that I had a bit of a cold with a sore throat and congestion from my Dalton critters didn't help.  Today, I feel a little better, but still really tired.  Did about with Brent, planting some cabbages, Brussel sprouts, and broccoli and a few herbs....trying to decide about work tomorrow.

It's a crazy thing...to be a lab rat...but since the poor little ratties with vitiligo lived and the ones without it did not...guess I'll take my white shining patches.  Here's to more anti - PD 1 in December!  - c