Clinical Trial: immunotherapy using tumor infiltrating lymphocytes (TILs)

lilacbrroller
lilacbrroller Member Posts: 412 Member
edited January 2015 in Colorectal Cancer #1

Surprised

 

hi, all. This will be my second clinical trial, and second attempt at immunotherapy.  I've been accepted into this trial and 

here is a link to the trial. https://clinicaltrials.gov/ct2/show/NCT01174121?term=Immunotherapy+til&recr=Open&rank=7

This is the one where they harvest white cells (tumor infiltrating lymphocytes-TILs) from a piece of one of my tumors, grow them in a lab, and and after some genetic analysis and tinkering, shoot them back into my body and see what happens. Hopefully something good and life extending!  If not, at this point, I have nothing to lose.

There are many checkpoints at which I can be booted from this trial, but it's worth a try anyway. so, here goes the start of another adventure with cancer! 

Karin

 

«13

Comments

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #2
    Way to keep fighting Karen. I

    Way to keep fighting Karen. I will hope and pray that you find success with this trial.

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #3
    Best luck to you with the

    Best luck to you with the trial. I pray a successful result for you.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #4
    Fingers crossed Karin.

    Fingers crossed Karin.  Really hoping it works!  Please keep us updated.

  • Easyflip
    Easyflip Member Posts: 588 Member
    #5
    Thank you Karin

    for paving the way in new therapies and treatments. This must happen if we are to keep marching towards a cure! Immunotherapy may be the key! Thank you thank you thank you!

    Easyflip/Richard

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #6
    beating mets to mush

    Karin, I hope they've got it right for you, and that it turns the mets to mush. It DOES happen.

    Can you tell us more about the potential checkpoints?

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #7
    Karin

    Fingers crossed this works great for you and the others in the trial.  Keep us abreast of how it's going would you?

    looking forward to you getting life extending good out of this new adventure.

    Onward Ho!

    Winter Marie

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #8
    Good luck!

    I feel that one of these immunotherapy approaches has got to be a winner, and I really hope it's this one.  You've been very strong and deserve to have great results.

  • coloCan
    coloCan Member Posts: 1,944 Member
    #9
    annalexandria said:

    Good luck!

    I feel that one of these immunotherapy approaches has got to be a winner, and I really hope it's this one.  You've been very strong and deserve to have great results.

    Here's another approach with potential:

    http://immuno-oncologynews.com/2015/01/26/worlds-first-human-clinical-trial-novel-cancer-vaccine/

     

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #10
    coloCan said:

    Here's another approach with potential:

    http://immuno-oncologynews.com/2015/01/26/worlds-first-human-clinical-trial-novel-cancer-vaccine/

     

    update

    ColoCan:  I'd love a cancer vaccine. If I could have gotten one as a baby to prevent all types of cancer? That would be awesome! i did click the link and know that's not what they are making... I was following the case of Provenge, an FDA approved vaccine for prostate cancer, and apprently the company didn't market it enough or something because the company is in chapter 11.  It did work and extended some patients' lives but I don't know why it never made much money. Maybe doctors and patients feared immunotherapy?  Maybe it was too expensive for the results it achieved? 

    Update on my trial experience:  Met with a thoracic surgeon today. In a week's time, I'll have surgery (my first!! for cancer, anyway) to harvest two lung tumors from which they will extract the T-cells. Things are moving along.

    cheers

    Karin

     

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #11
    lilacbrroller said:

    update

    ColoCan:  I'd love a cancer vaccine. If I could have gotten one as a baby to prevent all types of cancer? That would be awesome! i did click the link and know that's not what they are making... I was following the case of Provenge, an FDA approved vaccine for prostate cancer, and apprently the company didn't market it enough or something because the company is in chapter 11.  It did work and extended some patients' lives but I don't know why it never made much money. Maybe doctors and patients feared immunotherapy?  Maybe it was too expensive for the results it achieved? 

    Update on my trial experience:  Met with a thoracic surgeon today. In a week's time, I'll have surgery (my first!! for cancer, anyway) to harvest two lung tumors from which they will extract the T-cells. Things are moving along.

    cheers

    Karin

     

    Been thinking about you and trial

    Keeping fingers and toes still crossed that it's a wonderful success for you.  Will keep looking for your updates. You are a pioneer going forth where others haven't. That's bravery.

    Winter Marie

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #12
    herdizziness said:

    Been thinking about you and trial

    Keeping fingers and toes still crossed that it's a wonderful success for you.  Will keep looking for your updates. You are a pioneer going forth where others haven't. That's bravery.

    Winter Marie

    surgery/tumor extraction done

    Just got back from NIH today. Had the surgery yesterday (tumor extraction - VATS to remove two lung tumors for harvesting of TILs - tumor infiltrating lymphocyte Ninjas) and leukaphoresis on Monday. I'm pretty wiped out but feel OK. NCI/NIH is a wonderful place. Completely free of course, and the care is excellent. 

    Now, I wait to see if the cells grow. 

    back to sleep!

    KarinWink

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #13
    lilacbrroller said:

    surgery/tumor extraction done

    Just got back from NIH today. Had the surgery yesterday (tumor extraction - VATS to remove two lung tumors for harvesting of TILs - tumor infiltrating lymphocyte Ninjas) and leukaphoresis on Monday. I'm pretty wiped out but feel OK. NCI/NIH is a wonderful place. Completely free of course, and the care is excellent. 

    Now, I wait to see if the cells grow. 

    back to sleep!

    KarinWink

    Dear friend

    You are always so upbeat. You've been through the mill, and yet here you are saying you feel OK. I am glad that you feel OK, but I sure hope that you plan to take it easy, and get yourself fully back to full strength. 

    Its good to hear from you, and I pray that your treatments prove succesful. 

    HUGS!

    Sue - Trubrit

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    #14
    lilacbrroller said:

    surgery/tumor extraction done

    Just got back from NIH today. Had the surgery yesterday (tumor extraction - VATS to remove two lung tumors for harvesting of TILs - tumor infiltrating lymphocyte Ninjas) and leukaphoresis on Monday. I'm pretty wiped out but feel OK. NCI/NIH is a wonderful place. Completely free of course, and the care is excellent. 

    Now, I wait to see if the cells grow. 

    back to sleep!

    KarinWink

    Keeping you close in thoughts

    Keeping you close in thoughts and prayers! Glad to hear you are home and resting.  Keep on keeping on!! Positive, positive, positive .. that is the best medicine they tell me .. Laughing

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #15
    lilacbrroller said:

    surgery/tumor extraction done

    Just got back from NIH today. Had the surgery yesterday (tumor extraction - VATS to remove two lung tumors for harvesting of TILs - tumor infiltrating lymphocyte Ninjas) and leukaphoresis on Monday. I'm pretty wiped out but feel OK. NCI/NIH is a wonderful place. Completely free of course, and the care is excellent. 

    Now, I wait to see if the cells grow. 

    back to sleep!

    KarinWink

    Thanks Karin...appreciate you

    Thanks Karin...appreciate you sharing the details with us.   Crossing everything that can be crossed that this works!

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #16
    lilacbrroller said:

    surgery/tumor extraction done

    Just got back from NIH today. Had the surgery yesterday (tumor extraction - VATS to remove two lung tumors for harvesting of TILs - tumor infiltrating lymphocyte Ninjas) and leukaphoresis on Monday. I'm pretty wiped out but feel OK. NCI/NIH is a wonderful place. Completely free of course, and the care is excellent. 

    Now, I wait to see if the cells grow. 

    back to sleep!

    KarinWink

    Thanks for updating Karin. I

    Thanks for updating Karin. I really hope this works for you. You really and truly are a fighter.

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #17
    janderson1964 said:

    Thanks for updating Karin. I

    Thanks for updating Karin. I really hope this works for you. You really and truly are a fighter.

    thanks for your support

    thanks - I appreciate the support. I get a fair number of queries from folks, even patients and caregivers with other types of cancers, asking questions about my experiences with DC Vax/dendritic cell therapy and the PD-1/Anti KIR trial. I guess CSN pops up on google a lot. Glad to help when I can.

    cheers all

    Karin

  • traci43
    traci43 Member Posts: 773 Member
    #18
    lilacbrroller said:

    surgery/tumor extraction done

    Just got back from NIH today. Had the surgery yesterday (tumor extraction - VATS to remove two lung tumors for harvesting of TILs - tumor infiltrating lymphocyte Ninjas) and leukaphoresis on Monday. I'm pretty wiped out but feel OK. NCI/NIH is a wonderful place. Completely free of course, and the care is excellent. 

    Now, I wait to see if the cells grow. 

    back to sleep!

    KarinWink

    Awesome!

    Please continue to keep us informed on the trial.  So exciting, I hope it works for you and others in the trial.  Good luck, Traci

  • Yolllmbs
    Yolllmbs Member Posts: 360 Member
    #19
    traci43 said:

    Awesome!

    Please continue to keep us informed on the trial.  So exciting, I hope it works for you and others in the trial.  Good luck, Traci

    Sounds

    Very promising!  You are always so upbeat.  That's worth 100 doctors!

     

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #20
    Yolllmbs said:

    Sounds

    Very promising!  You are always so upbeat.  That's worth 100 doctors!

     

    Schedule

    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 (failure to achieve results at any step can result in termination of a subject's participation in the trial):

    • 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 go time!

     

    Karin

     

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #21
    lilacbrroller said:

    Schedule

    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 (failure to achieve results at any step can result in termination of a subject's participation in the trial):

    • 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 go time!

     

    Karin

     

    Wow Karin!  I'm excited for

    Wow Karin!  I'm excited for you and truly hope this works.  I have a few (probably stupid) questions...

       Is the intent cure?

       I think I read there is no charge for all of this?

        Where exactly is nci?

        Can you have visitors during your stay?

        What are you expecting for that one month stay?  You mention boy in the bubble, will you be that protected for the months?

    I wish you all the best and thank you for sharing your story with us!

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