Postby mackswife » Tue May 19, 2015 11:16 am
The fine folk at NIH (or NCI) in Bethesda called yesterday, and asked if DH could be in Bethesda, Md. for a full day of evaluation and consultation on Thursday. We were in Florida at the time, helping my mother who is in the hospital with pneumonia. She was in the middle of a move to an assisted living facility when she became ill. Anyway, we had spent the previous 3 days helping coordinate her move and trying to help sort out all the health issues at the hospital (because a diagnosis of pneumonia and Parkinson's requires consults from Neurologists, Pulmonary Specialists, Infectious Disease doctors, Gastroenterologists, Physical Therapists, and Respitory Therapists). It was in the midst of this whirlwind that "THE CALL" finally came! The Rosenberg TIL trial may actually be within reach!
We left mom (bless her heart) in the care of my brother (Bless his heart!), headed back to Atlanta, and made reservations to fly to Bethesda tomorrow. Will not find out if DH has officially been accepted into the TIL trial until next week.
Tired, Hopeful, Excited, Scared.....I'll try to post updates about our experience for those of you who might also be looking into this exciting clinical trial.
Pattie
Update 5/22 - Our experience at NIH (NCI) was amazing. The day of testing and interviews was very long and exhausting...and thorough. A highlight of our trip was getting to meet Karin (lilacbreastedroller) who is doing well half-way through the protocol. It was great to meet a fellow "club member".
Sadly, we received a telephone call from the physicians yesterday telling us that DH was not a candidate for the trial. The tumor they wanted to resect for the protocol was "too close to the kidney, and has probably invaded the kidney." So the surgeon felt it would be unsafe to proceed. So, DH has 2 choices left....more chemo (folfoxiri) or palliative care. DH will make that decision soon, and he'll have my full support. He's grateful to have had the opportunity to explore this trial, but has no interest in "turning over another rock". We're still in the stands, cheering the rest of you on.
Pattie
Last edited by
mackswife on Sat May 23, 2015 5:00 am, edited 1 time in total.
Husband IIIC;
7/12 - resection; 12 rounds folfox
CT/PET scans 4/13, 9/13 - NED
CT scan 3/14 - liver/LN mets
5/2/14- failed liver resection - peri. mets.
6 rounds of iri/avastin
8/26/14 - failed liver resect/HIPEC. dse. progression
9/14 - 3/15 - progression on chemo
3/23/15 - treatment stopped; working the bucket list