Thanks for the input Mohr and RockR. Yes I can see Cleveland Clinic going by a scripted playbook, that is what Roswell Park does. I DO NOT want a Treatment Facility like that anymore,. Looking for a little bit more out-of-the-box thinking. We shall see what happens with this 2nd go around of TIL inf...

Thanks for the reply gina - We had the same experience at MSK, they agreed with Roswell Park,,, so nothing innovative from them. We live in Western, NY and Cleveland is about 2 hrs. I read Dr. Burke's reviews/bio's that's about it. I may look into UPMC, Pittsburgh, PA or Strong Memorial in Rochester...

Quick Question - It appears our Oncologist at Roswell Park, Buffalo, NY is leaving. Im thinking about taking my Wife to Cleveland Clinic Main Campus and possibly trying to see Dr. Carol Burke. Anyone have any thoughts on Cleveland Clinic and Dr Burke ? Thanks,

Well we heard back from NIH today, They want my Wife to start next round of Capecitabine (but they may stop it after only one week) they want her to hold off on Bevacizumab (Avastin) next week, So we have to be getting closer to TIL Infusion. No formal schedule has been determined as of yet.

Hi Teri3 - we have heard crickets from our Fellow. Last week sent CT scan we had in Buffalo and requested an update. This week sent a email asking if we should or not halt chemo for next week, since we have to mail order our Capecitabine which takes several days. Have not heard back from NIH. Last s...

Hi Teri3 - I believe this is the new TIL trial. NCT03412877 Im not sure. We were offered this new trial after we were accepted into the original TIL trial NCT01174121.

Possible clinical trial at NIH/NCI - Administering Peripheral Blood Lymphocytes Transduced With a Murine T-Cell Receptor Recognizing the G12V Variant of Mutated RAS in HLA-A*1101 Patients. link to trial here : https://clinicaltrials.gov/ct2/show/NCT03190941

I was at NIH on Thursday and receive some great news everything is the same. although they think the tumor in my lung may have once again shrank they definitely believe that it is fading. I was shocked when the doctor told me it was my 18th month since I received my TILs. wow how fast time goes by....

Sleen wrote:Checking in to report that follow-up FOURTEEN was all good. I am still NED.
Next follow-up in six months.

Celine

Great News !

Ok so standard care on Xeloda is 2 weeks on and 1 week off. Say if you take Xeloda from Monday and end 2 weeks later on a Monday, How long does it take during the off week that Xeloda vacates your system ? 5FU pump half life is just a few hours, BUT how long is the pill form remain in your system ? ...

Hi JacknKatieMom - I would still reach out to NCI/NIH and get the ball rolling with inquires and get your name in front of them.

Yes Teri3, I think the longer we can hold out, the better their technology is getting. Proof in April when we went from the original TIL trial to the newer Younger TIL trial and vaccines offered). Of course you/they have to weigh the options as not to put you at risk. Exciting times with Dr Rosenber...

Same here, Til infusion scheduled in April 2018, new TIL trial offered to us then. Stable CT scans in Mar-May-July 2018. On hold, then.... my Wife was offered in June - 4 NIH trials, 2 TILs and 2 Vaccines. We had 2nd infusion of TILs or vaccine's slated for Aug 2018. Then they decided on 2 trials (T...

Great news teri3 ! Cells are growing ! Has NCI/NIH determined Reactivity of your cells ? Best wishes !

when my Wife had her first Colonoscopy, they found the cancerous tumor in Sigmoid Colon. Our GI Dr. ordered an abdominal CT scan. Most abdominal CT scans catch the lower portion of your lungs, hence that's where they found some nodules. Also, I just had an abdominal CT scans last week for some urine...