Clinical Trial: immunotherapy using tumor infiltrating lymphocytes (TILs)
Comments
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no such thing!jen2012 said: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!
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
Karin
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Thanks for keeping uslilacbrroller said:no such thing!
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
Karin
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.
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I really appreciate your keeping us all updated, Karin...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
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!
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Good Luck
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
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Best Of Lucklilacbrroller said:no such thing!
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
Karin
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
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WOW!! That is just awesome!!lilacbrroller said:no such thing!
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
Karin
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!
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Wowlilacbrroller 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
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
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thanks, allCazz said:Good Luck
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
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
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Karin
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
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Karinlilacbrroller 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
just read your updates,hope all is going great for you!!!
Winter Marie
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Karin, best luck with it! Ililacbrroller 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
Karin, best luck with it! I am praying for you.
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At NIH Now - Get cells Friday!herdizziness said:Karin
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
Hi, all. I am now residing at the NIH Hilton
, 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
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I am so happy for you!!lilacbrroller said:At NIH Now - Get cells Friday!
Hi, all. I am now residing at the NIH Hilton
, 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
I amI 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!
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Oh wow, this is so exciting!lilacbrroller said:At NIH Now - Get cells Friday!
Hi, all. I am now residing at the NIH Hilton
, 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
I really, really hope this knocks your cancer flat on its back.
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You go get the. New Cellslilacbrroller said:At NIH Now - Get cells Friday!
Hi, all. I am now residing at the NIH Hilton
, 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
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
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Go Cells Go!!!lilacbrroller said:At NIH Now - Get cells Friday!
Hi, all. I am now residing at the NIH Hilton
, 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
Best wishes for you and for the special cells.
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The ride of your lifelilacbrroller said:At NIH Now - Get cells Friday!
Hi, all. I am now residing at the NIH Hilton
, 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
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
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Good luck Karin, we arelilacbrroller said:At NIH Now - Get cells Friday!
Hi, all. I am now residing at the NIH Hilton
, 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
Good luck Karin, we are pulling for you! it is awesome that you are sharing this experience with us.
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Wow!!lilacbrroller said:At NIH Now - Get cells Friday!
Hi, all. I am now residing at the NIH Hilton
, 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
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.
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Dear Karin, best luck to you
Dear Karin, best luck to you and best wishes to you! I will pray hard for you.
0
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