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Re: TIL Immunotherapy at NCI

Posted: Fri Oct 07, 2016 8:18 am
by DAS43
Yesterday was my Apheresis at NIH. wasn't to bad of an experience. My fellow put a double lumen catheter into my groin. My veins in my arm are shot do to chemo. The hardest part was sitting still for hours. The nurses and doctors at NIH are the best. My fellow came back to take the catheter out and held pressure on the site for 20 min. Lol gave me lots of time to ask questions. The nurse was shocked said she usually she does that. Now just waiting for a surgery date to harvest a tumor. The thoracic surgeon said 1 to 2 weeks.

Re: TIL Immunotherapy at NCI

Posted: Fri Oct 07, 2016 10:00 am
by Sleen
Twenty minutes! eeps. The doc was held CAPTIVE. I love it.
It sounds like it went well!

Celine

Re: TIL Immunotherapy at NCI

Posted: Fri Oct 07, 2016 2:32 pm
by LPL
Please forgive me (English is my 2nd language), I don't understand. Is "My fellow" another name for 'My doctor'?

Re: TIL Immunotherapy at NCI

Posted: Fri Oct 07, 2016 2:55 pm
by DAS43
LPL wrote:Please forgive me (English is my 2nd language), I don't understand. Is "My fellow" another name for 'My doctor'?




Yes the doctor assigned to me is called fellow. I'm not sure why

Re: TIL Immunotherapy at NCI

Posted: Fri Oct 07, 2016 3:16 pm
by Sleen
"Fellows" just means they are doctors who are at NIH on a temporary basis. They applied for a fellowship on the Surgical Branch. For example, my fellow has a 3-year commitment, after which he will return to his "home" hospital to complete his residency. The fellows rotate to their new assignments each July. They spend time on three rotations: clinic, surgery, and lab.

I'm on my third fellow :)

Celine

Re: TIL Immunotherapy at NCI

Posted: Fri Oct 07, 2016 4:05 pm
by LPL
Thank You DAS & Sleen, for explaning this to me.
I/we live in a country where not our 2nd language English is spoken but it's our 3rd language.
Believe me it is not easy getting a cancer diagnose and trying to deshiffer(sp) all info. We do feel we are very well taken care of though.
Again Thank You ! /LPL

Re: TIL Immunotherapy at NCI

Posted: Sat Oct 08, 2016 3:01 pm
by AngelaN
Update - John had his MRI of brain and aphoresis this week along with consult with thoracic surgeon. He is going to have surgery 10/20 for tumor harvest. It was an interesting visit - the surgeon went out of his way to tell my husband how risky this was, he already has a L upper lobectomy, so putting him on a vent and ventilating him for several hours with what's left of L lung is risky blah blah blah. I finally said to him that we understand, but if we don't do anything, the cancer will kill him anyway. So we'd like to have a surgery date and we would like it to be the week after next since we close on our new house next week. Hoping for VATS but not sure if it will work due to previous SBRT and 2 ablations in that lung.
Scans went to JHU today, they are looking at the hilar lesion for another study.
Fingers crossed that surgery goes well.
I'll keep everyone posted.

Re: TIL Immunotherapy at NCI

Posted: Sat Oct 08, 2016 4:09 pm
by bitchslapped
I just want to jump in & congratulate Sleen on her success & followup on this thread AND those that have been accepted into this immunotherapy program.

Best Wishes for a positive outcome.
BS

Re: TIL Immunotherapy at NCI

Posted: Sat Oct 08, 2016 4:17 pm
by DAS43
AngelaN wrote:Update - John had his MRI of brain and aphoresis this week along with consult with thoracic surgeon. He is going to have surgery 10/20 for tumor harvest. It was an interesting visit - the surgeon went out of his way to tell my husband how risky this was, he already has a L upper lobectomy, so putting him on a vent and ventilating him for several hours with what's left of L lung is risky blah blah blah. I finally said to him that we understand, but if we don't do anything, the cancer will kill him anyway. So we'd like to have a surgery date and we would like it to be the week after next since we close on our new house next week. Hoping for VATS but not sure if it will work due to previous SBRT and 2 ablations in that lung.
Scans went to JHU today, they are looking at the hilar lesion for another study.
Fingers crossed that surgery goes well.
I'll keep everyone posted.


I will be keeping your husband and you in my prayers. How far from NIH do you live?

Re: TIL Immunotherapy at NCI

Posted: Mon Oct 10, 2016 1:52 pm
by Sleen
Thank you, BS!

Fingers crossed for both John and Deb to have success as well!!!

Celine

Re: TIL Immunotherapy at NCI

Posted: Thu Oct 20, 2016 7:35 pm
by AngelaN
Checking in...John had his tumor harvest today. The surgeon was concerned they would have to do an open procedure because of the location and the adhesions from SBRT, but all went well and they were able to get it easily via VATS. They did find some pleural mets and one of his mets is wrapped around a large bronchi rendering it basically useless. I guess that's why we are here right? Nothing changes. We are still moving forward and now we are all systems go for the trial. He is in the ICU but probably could have gone to the floor. I continue to be impressed with the care and attention he (and I) am getting. It's been a long day. But one step closer to our goal.
And DAS43 - I never answered your question - we live in Phila - about 2.5 hr drive.

Re: TIL Immunotherapy at NCI

Posted: Thu Oct 20, 2016 8:01 pm
by DAS43
AngelaN
Glade things went well today. Sending prayers for quick healing for your husband and strength for you.

Re: TIL Immunotherapy at NCI

Posted: Sun Oct 23, 2016 7:43 pm
by AngelaN
Home! We have had a difficult decision to make. We have options at Hopkins for other trials. During the rounds Dr. Kummala was dancing around the issue of what to do in the meantime. I told him that it didn't make sense to me right now to start chemo. Johns cancer has been pretty slow growing. So we want to have a good couple of months, and let the cells grow. Then infusion in a few months. It's hard for me not to pay attention to the bright shiny penny of the Aztreo trial, but I think we need to stay the course.

Re: TIL Immunotherapy at NCI

Posted: Tue Nov 01, 2016 1:20 pm
by DAS43
Oct 27th I had 2 tumors removed from my right lung at NIH. What a wonderful place! I had great care. I spent the night in ICU and was transferred to a floor at 8am. At first when I woke from surgery I had alot of pain, but the nurses and doctors worked hard to get it controlled. I was up walking and released on Sat by noon. I have some discomfort but am very happy to be home. I was able to walk around town with my 5 year old grandson for Halloween, and will be able to be with my daughter tmrw when she will have labor induced. We will be welcoming my 2nd grandson into the world. God is good! He does hear and answer our prayers!

Re: TIL Immunotherapy at NCI

Posted: Tue Nov 01, 2016 5:11 pm
by Sleen
Thank you for the update! Grow TIL, grow!!!

Celine