There and back again...an elve's tale....

It's been a less than fun week...but to back up a step.... 

It was Tampa time again last week, so Brent and I took off from Atlanta as usual on Thurs.  It was one of the prettiest days we had ever had in Tampa-town (FYI....Florida is NOT always the land of sunshine!!!) so we drove out to St. Pete for a pretty, if cold and windy, walk on the beach.  It was a trip in that I was driving a Granny Car!!!  (Sorry, Kay!!!) But, per the continually nonsensical and fluid line-up and pricing that is Alamo, the "premium" ride was cheaper than the "economy" or "compact" that we usually go for.  So...we were tooling around in a gigantor, floaty, Chrysler 300!!!!  Brent thought my parking "skills" were hysterical and of a rather dubious nature.....but, hey!!! I've spent years driving Mini Coopers and Jukes...this was out of my size range!!!  But, our walk was fun and we returned to Tampa proper to eat at Pho Quyen on Hillsborough.  It lived up to its reputation on all the dining rating blogs!  We had delicious spring rolls, salt and pepper fried squid, and Vietnamese bun with grilled shrimp (sort of a salad with shoots, basil, and mint alongside warm rice noodles topped with the grilled shrimp and a side of flavored fish sauce)...all really delicious.  Plus, Brent tried Vietnamese coffee with condensed milk.  A thick glass containing about 1/2 inch of condensed milk in the bottom has strong coffee brewed directly into it. You then stir the mixture and pour over ice.  He was amazed that I already knew all about it.  Hey...I know stuff!  He loved it...no surprise, the boy has a thing for Eagle Brand!  Anyhow, it was fun and yummy and I highly recommend a stop if you're in the area.  Our usual La Quinta (on Fowler) was booked, with Spring Breakers I suppose, so we stayed in our original La Quinta (off Fletcher), that subsequently changed to a Holiday Inn Express.  Have to say....much better deal at La Quinta...since over the past 2 years our La Quinta has been kept up with new paint and such periodically and the now Holiday Inn was just as we had left it.  Anyhow....up early Friday morning for fun at Moffitt.

Don't know if my veins are sick of their role in my life (and to think I was never to have pokes, prods, BP's, IV's, etc. in either of my arms due to my bilateral lymphadenectomies!!!!) or if it has just been a run of bad luck, but IV starts have not been easy this go round with multiple pokes and digging required for the IV for scans last week and the same occurred at the CRU as well.  These things happen.  At any rate, IV finally started, blood drawn and back over to see Dr. Weber.  As usual, I was a nonevent...with no problematic findings and clear scans.  Did note continued increase in vitiligo. 

ONLY REAL INFO:  
In my NED group:  N = 31. 7 patients progressed while in the trial. Two patients have passed.  One is probably going to pass soon. Of the 4 remaining that progressed, 2 are subsequently NED again (I cannot tell you if this is with additional treatment or without.  I know from past conversations one patient had become NED after initially progressing with NO treatment and I know that other patients had been "doing well" with subsequent treatment with ipi....however, I do not know what was done in these two cases in particular.)  THEREFORE....now, of the original 31 patients, 26 remain NED.  That demonstrates a clinical benefit of 83%.  Dr. Weber admitted that is was "much better" than he had ever thought we would do.  He said he was meeting with the folks at BMS to try to set up a trial with anti-PD1 as a real adjuvant treatment for melanoma patients with resected disease today...given these results.  Additionally, a proposal for publication of at least some of the data from my trial has been submitted for discussion/presentation at ASCO in June.  Whether either of these things will really happen remains to be seen.

Got done surprisingly early given usual time constraints...  Had a chat with a sweet man and his niece undergoing therapy, different dx and trial, while getting my infusion and he was getting his.  Sad that such a large monument for cancer care and treatment is needed at Moffitt, MD Anderson, Sloan Kettering,and other places like them.

Had we flown Air Tran I am sure we could have gotten an earlier flight had they had seats.  But, flying Delta is not very nice.  One...you use a much busier part of the Atlanta terminal, since it is a large Delta hub.  Two...they charge you for checking bags...not that we do.  And Three....even if they have empty seats...which the lady at the gate told us they had 41 of....they still want you to pay them $50.00 for the kindness of putting your tookus in one of them.  B and I kept our hundred bucks and chatted and napped 'til our scheduled flight.  Will NOT be flying Delta again if we can help it!!!

So...GREAT job fellow ratties!!!!!  Yes!!! to Pho Quyen and La Quinta!!!!  NO!!!!! to Delta and Holiday Inn Express!!!!  And...Alamo?????  It is what it is.....and that ain't great....but what'cha gonna do?

Back home to a good visit with Fred-o who kept the doggies while we were away.  More on the week that was....next....  - c