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Re: TIL Immunotherapy at NCI

Posted: Sun Apr 09, 2017 8:56 am
by bobhuang1
Jacques wrote:Is this the trial that you mentioned? https://www.clinicaltrials.gov/ct2/show/study/NCT01174121?show_desc=Y#desc


Yes! That's exactly the trial that we applied. Thanks!

Re: TIL Immunotherapy at NCI

Posted: Wed Apr 12, 2017 6:35 am
by DH2Sleen
bobhuang1 wrote:We applied to this clinical trial by Dr. Rosenberg and we will fly down to Bethesda next week for a "final" screening. My question is, what kind of experience others have during this screening? Any details? And what to expect after the screening in terms of timeline? What can I do as a caretaker to make the whole thing less painful/stressful for my wife?


I'm sorry it took three days to reply to this request; We just got back from NIH last night. Celine is now officially one year NED. To answer your question, the best place I know of to go is Sleen's blog: cancerriot.blogspot.com . But if you have been following this thread, I suppose you've already seen that. Do you have a specific question that the blog doesn't address?

In general, the timing drags slowly:
screening - schedule surgery one to two weeks later
surgery - wait for cells to grow, sequence, test, grow some more, test again, schedule treatment about 12 weeks later
Treatment - two days of scans and bloodwork, seven days of chemo, cell infusion, three days of IL2, two to three weeks of recovery, all inpatient.
Followup - scans every four to six weeks for six to twelve months, then quarterly or so.

Re: TIL Immunotherapy at NCI

Posted: Wed Apr 12, 2017 1:23 pm
by Sleen
bobhuang1 wrote:Hello, I found this thread via a Google search and just registered. I have been taking care my wife ever since she was diagnosed with colon cancer on Christmas 2015. Unfortunately after 12 sessions of Folfox and 4 cycles of FOLFIRI+Avastin, the illness still progressed. We applied to this clinical trial by Dr. Rosenberg and we will fly down to Bethesda next week for a "final" screening. My question is, what kind of experience others have during this screening? Any details? And what to expect after the screening in terms of timeline? What can I do as a caretaker to make the whole thing less painful/stressful for my wife? Thanks much!

Bob


Hi Bob,

The initial screening will include blood work, EKG, CT scans, and potentially an MRI. There may be other tests, too. The next day, she'll meet an immunotherapy fellow (this is typically a surgical resident currently on fellowship with the NIH). After that, she'll meet with an attending physician. This person reports directly to Dr. Rosenberg. The attending physician will probably repeat a lot of what the fellow said, but it's good to hear it a second time. They'll talk about what the next steps will be, if the screening tests all come out favorable to eventual TIL therapy.

My screening visit happened on March 19, 2015. I blogged about each visit. Check out the link to my blog, cancerRiot in the signature of this post for many more details.

I wish your wife THE BEST. I hope that you're both amazed by the care she will receive at NIH. Please let me know if I can answer any other questions.

Celine (aka Sleen)

Re: TIL Immunotherapy at NCI

Posted: Wed Apr 12, 2017 1:39 pm
by Sleen
Hello!

I am happy to report that follow-up #11 happened earlier this week and there is still no sign of cancer! It has been just over a year since I was declared NED after the lung lobectomy.

I have to chase down a kidney stone or two before I return for my next follow-up. My labs were a bit off this time, and the NIH docs think it is related to stones. I will see a local urologist soon to hopefully sort all of that out. My energy is abysmal, but my spirits are soaring :)

Holding lots of hope for our friends here who are in various stages of this trial!

Celine

Re: TIL Immunotherapy at NCI

Posted: Wed Apr 12, 2017 2:59 pm
by Maia
Celine!!!!!!!! So happy to hear!!!! xoxoxoxo

bobhuang1 , if you read ALL the pages of this thread and, as DH2Sleen has said, the blog that Celine has written about all her experience, http://cancerriot.blogspot.com, you will know almost exactly what to expect :)

Cheering big time for all those in this trial!

Re: TIL Immunotherapy at NCI

Posted: Wed Apr 12, 2017 5:44 pm
by Lee
DH2Sleen wrote:. . . Celine is now officially one year NED. . .


That is so totally AWESOME :D

Congratulations on your success and may you ALWAYS reside in NEDville.

So happy for you,

Lee

Re: TIL Immunotherapy at NCI

Posted: Fri Apr 14, 2017 6:42 am
by DAS43
Celine great news! Very happy for you

Re: TIL Immunotherapy at NCI

Posted: Thu Apr 20, 2017 12:10 pm
by DAS43
At NIH today for 3rd Keytruda tx and results of ct scan yesterday. The CT scan shows graying around the cancer tumor. My "fellow" said it's hard to tell but the cell may of shrank a small amount. No new tumors. All very good news to me. :D

Re: TIL Immunotherapy at NCI

Posted: Thu Apr 20, 2017 1:20 pm
by DH2Sleen
DAS43 wrote:At NIH today for 3rd Keytruda tx and results of ct scan yesterday. The CT scan shows graying around the cancer tumor. My "fellow" said it's hard to tell but the cell may of shrank a small amount. No new tumors. All very good news to me. :D

That is great news in my opinion. The scans I've seen have shown this fuzzy aura around the tumors that shrink from this process. I hope you are feeling well and the tumors go away completely.

Re: TIL Immunotherapy at NCI

Posted: Thu Apr 20, 2017 5:47 pm
by Sleen
DAS43 wrote:At NIH today for 3rd Keytruda tx and results of ct scan yesterday. The CT scan shows graying around the cancer tumor. My "fellow" said it's hard to tell but the cell may of shrank a small amount. No new tumors. All very good news to me. :D


Sounds like great news!!! :D

Celine

Re: TIL Immunotherapy at NCI

Posted: Thu Apr 20, 2017 8:28 pm
by Lee
DAS43 wrote:At NIH today for 3rd Keytruda tx and results of ct scan yesterday. The CT scan shows graying around the cancer tumor. My "fellow" said it's hard to tell but the cell may of shrank a small amount. No new tumors. All very good news to me. :D


So totally AWESOME, congratulations,

Lee

Re: TIL Immunotherapy at NCI

Posted: Sun Apr 23, 2017 9:33 pm
by bitchslapped
Stopping by to congratulate all who are in this trial & thanks for the continued followups here.
A special shout out to Celine w/such wonderful news!

Best Wishes
BS

Re: TIL Immunotherapy at NCI

Posted: Tue Apr 25, 2017 1:45 pm
by andy21
Congrats to Celine.
1st case of NED using immunotherapy in Colon Cancer, hoping for many more success stories now.
I believe targeted immunotherapy is the solution which will be beneficial to many patients.

Re: TIL Immunotherapy at NCI

Posted: Thu Apr 27, 2017 10:28 am
by Lee
DAS43 wrote:At NIH today for 3rd Keytruda tx and results of ct scan yesterday. The CT scan shows graying around the cancer tumor. My "fellow" said it's hard to tell but the cell may of shrank a small amount. No new tumors. All very good news to me. :D


Sounds like good news to me too. Congratulations,

Lee

Re: TIL Immunotherapy at NCI

Posted: Tue May 23, 2017 8:52 pm
by jdepp
I'm on my way back from Bethesda after an NIH TIL trial follow up. The first scan wasn't very good, so I expected to be dropped from the trial today, but the second scan was mixed: some lesions slightly larger, some slightly smaller, so I may be getting some benefit after all. I'm scheduled to rinse & repeat the scan in a month. Wishing DAS43 & all others the very best. /jdepp