TIL Immunotherapy at NCI

[Sleen]

Best News EVER! So happy for you!!!

Celine

[KWT]

That's super Karin, I'll get the let results and speak to my onc more about this on Monday then make decision. I'm assuming that I'm in their system now and I could enter the trial later of there's room?

[mackswife]

I'm so very excited for you Karin! My DH and I are grateful to you and Sleen for keeping us posted on your experience. We're in process of sending all the required reports, scans and biologics into NIH now.
Hope to hear from them soon....a little worried as DH has been off chemo for 4 weeks now as the last 2 regimen's failed. He's having a CT scan today, and we know the results will be discouraging. But, at 66 years of age, he's otherwise healthy and doing well. So sorry for the digression....I know it's "not all about us". What I really wanted to say was - "Congratulations on having such intelligent TIL's!"

To Kenny - It's good to have options. You'll make the right decision.

Pattie

[DH2Sleen]

GREAT news Karin!!! I am imagining little pac-man cells... nom nom nom

[lilacbreastedroller]

Thank you. It is about us. Us meaning me, sleen, your dh, and anyone else interested in this trial. If it wasn't, I wouldn't be posting! Hope he gets in.

A separate trial on hpv caused cancers is showing results in solid rumors. It's run by a different PI but as far as I can tell, it uses the same science. Two complete cures in cervical cancers. This is good

Karin

[DK37]

my cells reacted!!!! This is great news. Means they attacked the mutations in my tumor, ie my t-cells are not dumb as a box of rocks. Next step is a final checkup and then hopefully I'll receive the treatment.
Karin

GREAT news Karin - Congrats!!!!!!!!
You are truly at the forefront & leading edge of current science - best of luck to you that and thank you (and the other participants!) for blazing the trail for the rest of us!

BTW, I just temporarily switched my avatar to a T-shirt I had made at Cafepress.com - it is a real photograph of two T-cells attacking a cancer cell If interested, I can send more info to any of you NCI trial participants, PM me your emails if interested-

-DK

[janderson]

That is awesome news Karin. I am thankful you have smart T-cells.

[Ceebo]

Such wonderful news , Karin. Thank you so much for keeping us updated. We are hopeful my husband will also get into this study sometime in the near future.

[lilacbreastedroller]

Got my appointments at NCI for final scans and bloodwork, and hopefully treatment. I go in next Tuesday (May 5th) for a battery of tests, then if everything is still OK, I'd have chemo for a week starting May 8th to knock out my immune system (boy in the plastic bubble situation), and then if all is well with the cells, I'd get treatment May 15th. Then I'd be in the hospital at NCI for a month or so while the cells hopefully attack my cancer.

So the whole timeline was:
Dec 2014 - sent in application
Jan 2015 - initial in-person screening: scans, bloodwork, tests (stopped all chemo Jan 4)
Feb 10 2015 - tumor harvest (two lung tumors), leukapheresis to collect white cells

checkpoints:

researchers have to find TILs in the tumor
TILs need to be able to grow outside the body
tumor genetically sequenced and mutations found
TILs determined to react to the mutations (I believe they isolate the mutations and test reactivity)
Choose which TILs to grow (i.e. which mutations got the best reactions) and grow them

April 23 2015 All of the above tests were completed, all systems go
May 5 2015 scans
May 8 2015 chemo to wipe out immune system
May 15 2015 infusion of cells, IL-2

So, onward! After all this waiting, it's finally time!
Karin

[Ceebo]

Karin: thanks for posting the time line in your NIH process. We are mailing in my husband's blood sample to NIH today and reports were sent out yesterday. There is some question about whether there will be enough tissue from the primary tumor to get the number of slides that are requested. Plus, the tumor sample was sent to Mayo a couple of weeks ago to get Foundation One testing done. It's not back at our local hospital yet. I'm not sure how to follow up in that.
I'll keep the forum posted on our progress!

[vilca11]

Karin, fantastic news, so happy to hear it! This is nerve wrecking to wait for an actual treatment results, but it looks like it will be working - soooo crossing fingers....
Hugs, Vilca

[KWT]

That's great news Karin!

[lpas]

So awesome, Karin! I'm really, really excited about this trial. Thanks so much for keeping us updated. Keeping fingers, toes and everything else crossed that it goes well for you, with minimal side effects.

[mackswife]

Karin - Wow! I am so excited for you, and feel remarkably blessed by your willingness to share, and your skill in explaining things so clearly. My DH's paperwork and scans have been sent in. NIH contacted us today to request the CD of a CT scan done this past Monday (which showed progression in size on lymph nodes, liver tumors, peritoneal dse. and a new nodule on the left lung). DH has been off chemo for 5 weeks, and has opted to remain off chemo for an additional 2 weeks hoping to hear from the fine folk at NIH. If there is more delay, our onc. recommended Folfoxiri (yuck!), which will most likely be required even if DH is accepted into the trial, just to deal with the time lag situation. Your recorded time line is very helpful in giving us some idea of what to expect (although I know ever case is slightly different).

DH and I are rooting for you. I'll be praying like a crazy person (try not to visualize that)! We hope all goes well, and that your TIL's kick butt!

Pattie

[Sleen]

So, onward! After all this waiting, it's finally time!

Yes! I'm very happy for you!!!
My initial contact was in Dec. 2014, too. I hit a few delays along the way.

Go TILs, go!!! Destroy those tumors!!!

Celine