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Clinical Trial: immunotherapy using tumor infiltrating lymphocytes (TILs)

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

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

 

janderson1964
Posts: 2215
Joined: Oct 2011

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

Fight for my love
Posts: 1530
Joined: Jun 2009

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

jen2012
Posts: 1607
Joined: Aug 2012

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

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

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's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

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's picture
herdizziness
Posts: 3642
Joined: Apr 2010

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's picture
annalexandria
Posts: 2573
Joined: Oct 2011

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
Posts: 1956
Joined: Oct 2009
lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

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's picture
herdizziness
Posts: 3642
Joined: Apr 2010

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's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

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's picture
Trubrit
Posts: 4851
Joined: Jan 2013

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
Posts: 509
Joined: Sep 2012

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
Posts: 1607
Joined: Aug 2012

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

janderson1964
Posts: 2215
Joined: Oct 2011

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

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

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's picture
traci43
Posts: 775
Joined: Jul 2007

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's picture
Yolllmbs
Posts: 361
Joined: May 2014

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

 

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

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
Posts: 1607
Joined: Aug 2012

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!

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

Hey, Jen. 

re: questions

I hope so, re: cure but I just don't know.  As far as I know, only melanoma patients (and a couple ovarian) have been cured, but many patients with other cancers have had good results.  I'm hoping this does SOMETHING for me, as I apparently have a good immune system already.

Yup. completely free.

NCI's headquarters is in Bethesda, Maryland

visitors - I hope so. Haven't gotten that question answered yet.

I will bring my Ipad and a lot of e-books. i hope I'm healthy enough to walk around and do things. No expectations. When I was in for tumor harvesting, there were patients who seemed to be isolated - all adults were on the same wing. I suspect that will be me.

thanks for your support and encouragement!  I will continue to post Laughing

Karin

janderson1964
Posts: 2215
Joined: Oct 2011

Thanks for keeping us updated. I will keep you in my prayers that all goes well, the treatment does what we are all hoping for, and the 4 weeks isn't too brutal.

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

Sounds amazing and wishing you all the best with this.  I know the area well, have family who live right around there and hope you get a chance to walk around a bit.  

iPads are probably the biggest medical break through ever, makes everything easier to deal with.  Now I just play games, listen to music or watch something while waiting instead of gettng aggrevated :)

hippiechicks
Posts: 509
Joined: Sep 2012

WOW!! That is just awesome!! Good for you!  I will be keeping you close in thoughts and prayers.

I really hope this helps you!  I have a very good feeling it will.  I believe this immunology is the key to cure.  It will not be easy on the wiping of the immune system, but necessary evil I suppose. 

Big cyber hug to you and lots of best wishes!

 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I'm hoping for awesome results for you, but it's also just great to have these trials documented in such a clear fashion.  I think it's very helpful for other patients.  

Thank you!

sflgirl
Posts: 220
Joined: Jan 2015

Congrats on moving forward in the trial.  Wiping out your immune system sounds pretty scary. You are very brave and deserve a great outcome.  Best wishes and keep posting

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

just read your updates,hope all is going great for you!!!

Winter Marie

Fight for my love
Posts: 1530
Joined: Jun 2009

Karin, best luck with it! I am praying for you.

Cazz
Posts: 107
Joined: Mar 2015

Hi Karin, I am so excited for you that you got into this trial.  I did wonder why they wanted to keep you in the hospital for four weeks, didn't realize that they were taking down your immune system - scary, but worth while.  I really think this is going to be THE therapy that will destroy cancer, but I suspect it will never become a standard therapy because of the time and cost involved, so you are one of the lucky ones!  I'll have to tell you that again next week when you are living in your bubble, bored and feeling like crap!  Just think how great you will feel when they infuse those billions of ninja t-cells back into your body - maybe you will feel like a cartoon super-hero when they make their transformation from normal to having their super powers!  Only in your case it will be your ninja's coursing through your bloodstream on a search-and-destroy mission - may they be super-successful.

I have applied to NCI/NIH for the same trial for metastatic anal cancer, I should hear today whether I will even be considered as I had an earlier diagnosis of metastatic breast cancer as well as anal and if the tissue the lab sent them turn out to be breast then I am ineligible for all NCI trials, even though they have never found a breast primary, nor any other breast mets, sigh.

Please keep us updated as you are able, stay healthy, stay strong and greet those ninjas joyfully!

Carol

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

Thanks all for your support. I'll keep everyone posted. No guarantees I'll even get the treatment, but I can only hope.  Cazz - crossing my fingers that you've only got one cancer to worry about.  I think these results are from your study, on HPV related cervical cancer: http://www.medscape.com/viewarticle/826062.  It's good news anyway.

best,

Karin

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

my Onc, told me to go for this trial.  I called and left them a message, any help on the process you've gone through you can give me a bit more on?

winter Marie

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

Hi, all. I am now residing at the NIH Hilton Cool, and have been for a week. Had  all the scans - all systems go. Have been receiving chemo to knock out my immune system, and hopefully Friday I will receive my especially grown cells. Fingers crossed they will do something!

Winter I PM'd you.

cheers

Karin

hippiechicks
Posts: 509
Joined: Sep 2012

I am so happy for you!!

I am wishing you all the best of luck and strength that those buggers get beaten. You are a true inspiration and I so admire your spunk. 

Cutting edge treatments like this will surely be saving many lives.

I feel really good about this for you!

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I really, really hope this knocks your cancer flat on its back.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Fingers, toes and everything crossed for you,

sending prayers to those that be, and very best wishes your way,

Winter Marie

Thanks for the PM

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

Best wishes for you and for the special cells.  

Trubrit's picture
Trubrit
Posts: 4851
Joined: Jan 2013

or the ride for your life.

I will be thinking of you and praying that these new cells kick cancer right outta the door. 

Cyber hugs!

Sue - Trubrit

jen2012
Posts: 1607
Joined: Aug 2012

Good luck Karin,  we are pulling for you!  it is awesome that you are sharing this experience with us.

sflgirl
Posts: 220
Joined: Jan 2015

Best wishes!  Do you have any idea what might start to happen to you with your new immune system?  Outside of beating the tumors up I mean.  

 

sflgirl
Posts: 220
Joined: Jan 2015

You are probably going through a lot but thought of you today when NewHere posted a link to an article in the Wash Post regarding T-cell trials.

Hope all is well.

Fight for my love
Posts: 1530
Joined: Jun 2009

Dear Karin, best luck to you and best wishes to you! I will pray hard for you.

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

you started this exciting new treatment on my birthday so I think it's especially lucky!! Keep us posted, got your back!

Easyflip/Richard

beaumontdave's picture
beaumontdave
Posts: 996
Joined: Aug 2013

Good luck, sounds very hopeful, and amazing that they can do such a thing.

danker's picture
danker
Posts: 1187
Joined: Apr 2012

Best of luck dear one!  I hope it all works out for you!

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