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Re: TIL Immunotherapy at NCI

Posted: Fri Jul 14, 2017 7:57 am
by DAS43
:D. Great news Celine! Can I ask who your new fellow is? I received an email and found out I will have new research nurse when I go back. Kinda sad over that I really loved my nurse she was great!

Re: TIL Immunotherapy at NCI

Posted: Fri Jul 14, 2017 8:05 am
by Sleen
Sent a PM.

Celine

Re: TIL Immunotherapy at NCI

Posted: Fri Jul 14, 2017 8:14 pm
by Lee
Sleen wrote:We're back from follow-up #12. All good!
They've decided to schedule the next one for SIX MONTHS out. This is a first for me. We'll see if Dr. Rosenberg lets the order stand (he vetoed it last time it was suggested).

My clinic visit was one of the shortest ever, which is OK by me ;)

Celine


Celine, CONGRATULATIONS on your continued success. I am so happy for you,

Lee

Re: TIL Immunotherapy at NCI

Posted: Mon Sep 11, 2017 12:54 pm
by pdp497
Hi Everyone,

I have been very interested in this trial since I first heard of it and am looking into applying if my first line treatment fails, but I had a quick questions. I have been reading through the thread and there is a mention of MD Anderson as a possible site for a similar study. I am currently being treated there and live in Austin so it would be a lot more ideal than traveling across the country. Have there been any updates on the status of this I haven't seen mention of it in a while. Thanks for any information you can provide.

Re: TIL Immunotherapy at NCI

Posted: Wed Sep 13, 2017 6:22 pm
by Lee
pdp497 wrote:Hi Everyone,

I have been very interested in this trial since I first heard of it and am looking into applying if my first line treatment fails, but I had a quick questions. I have been reading through the thread and there is a mention of MD Anderson as a possible site for a similar study. I am currently being treated there and live in Austin so it would be a lot more ideal than traveling across the country. Have there been any updates on the status of this I haven't seen mention of it in a while. Thanks for any information you can provide.


Since you are currently being treated there, can you call or email them directly and see what they say?

Good luck,

Lee

Re: TIL Immunotherapy at NCI

Posted: Thu Sep 14, 2017 5:40 am
by DH2Sleen
pdp497 wrote:Hi Everyone,

I have been very interested in this trial since I first heard of it and am looking into applying if my first line treatment fails, but I had a quick questions. I have been reading through the thread and there is a mention of MD Anderson as a possible site for a similar study. I am currently being treated there and live in Austin so it would be a lot more ideal than traveling across the country. Have there been any updates on the status of this I haven't seen mention of it in a while. Thanks for any information you can provide.

Here is a link to the study: https://clinicaltrials.gov/show/NCT02757391
They had an original planned start date of Aug 2016. It has been pushed back a couple of times and they updated it last week to Dec 2017. It might be best to ask your doctors if they think this will actually start up this year; if not, you would probably get started faster at NIH.

Re: TIL Immunotherapy at NCI

Posted: Thu Sep 14, 2017 9:46 am
by pdp497
DH2Sleen wrote:
pdp497 wrote:Hi Everyone,

I have been very interested in this trial since I first heard of it and am looking into applying if my first line treatment fails, but I had a quick questions. I have been reading through the thread and there is a mention of MD Anderson as a possible site for a similar study. I am currently being treated there and live in Austin so it would be a lot more ideal than traveling across the country. Have there been any updates on the status of this I haven't seen mention of it in a while. Thanks for any information you can provide.

Here is a link to the study: https://clinicaltrials.gov/show/NCT02757391
They had an original planned start date of Aug 2016. It has been pushed back a couple of times and they updated it last week to Dec 2017. It might be best to ask your doctors if they think this will actually start up this year; if not, you would probably get started faster at NIH.

Thanks for the information. I am actually still on my first line treatment so I won't be eligible for either study for at least several months I am just trying to find the best options and be ready to pursue them. I am sure both trials will be difficult to get in to so I am glad there is more than one. I am probably leaning toward the NIH as a first choice because they have been doing it much longer even though it would increase the travel and they seek to provide more follow up care. The MDA version indicates only 6 months of follow up after completing the protocol, which seems short. After your wife's experience do you feel that the NIH teams expertise is worth the additional time and travel involved? Thanks again for taking the time to respond, I am happy your wife has had such an amazing response and her story has given me hope through these difficult times.

Re: TIL Immunotherapy at NCI

Posted: Thu Sep 14, 2017 5:27 pm
by DAS43
:D
Had my follow up at NIH today. The tumor has shrunk to 49.8% very happy and feel blessed. My next follow up will be in December.

Re: TIL Immunotherapy at NCI

Posted: Thu Sep 14, 2017 8:23 pm
by jdepp
Fabulous news! Keep on keepin' on!

Re: TIL Immunotherapy at NCI

Posted: Fri Sep 15, 2017 5:23 am
by DH2Sleen
pdp497 wrote: After your wife's experience do you feel that the NIH teams expertise is worth the additional time and travel involved?

Three years ago, when we worked so hard to get into this trial, I would have said that it was our only option... either this trial succeeds or we have no hope. Now, I think there are real options for just about everyone. I still think the TIL trial at NIH is the ultimate solution, but other protocols are working for particular mutational configurations. And, some of the friends we have made participating in this trial have not been successful because it didn’t kill off 100% of their tumors.
But I still recommend this trial, at NIH, for a few reasons. 1) Nobody has more experience, 2) It costs nothing for the patient after the first visit (caregivers may get lodging, but maybe not), 3) NIH has done additional follow-up treatments whenever there was a chance it would get the patients disease-free, 4) No charges ever hit our insurance co-pays or deductibles, 5) If it doesn’t kill off 100% of the disease, you still have all other conventional therapies and most trials to turn to.
I think the key to success with this trial is to do it early. Ironically, you need to be fairly healthy (while mortally ill) to handle the treatment. But to answer your question, it was well worth it for us… life changing.

Re: TIL Immunotherapy at NCI

Posted: Fri Sep 15, 2017 5:25 am
by DH2Sleen
DAS43 wrote::D
Had my follow up at NIH today. The tumor has shrunk to 49.8% very happy and feel blessed. My next follow up will be in December.

Awesome!!!!!! So you are officially a Partial Responder now?

Re: TIL Immunotherapy at NCI

Posted: Fri Sep 15, 2017 6:06 am
by Sleen
wooHOO, DAS!!! That is fantastic news! I bet you've got the whole Surgery Branch doing cartwheels :)
C O N G R A T U L A T I O N S ! ! !

Celine

Re: TIL Immunotherapy at NCI

Posted: Fri Sep 15, 2017 1:52 pm
by pdp497
DH2Sleen wrote:
pdp497 wrote: After your wife's experience do you feel that the NIH teams expertise is worth the additional time and travel involved?

Three years ago, when we worked so hard to get into this trial, I would have said that it was our only option... either this trial succeeds or we have no hope. Now, I think there are real options for just about everyone. I still think the TIL trial at NIH is the ultimate solution, but other protocols are working for particular mutational configurations. And, some of the friends we have made participating in this trial have not been successful because it didn’t kill off 100% of their tumors.
But I still recommend this trial, at NIH, for a few reasons. 1) Nobody has more experience, 2) It costs nothing for the patient after the first visit (caregivers may get lodging, but maybe not), 3) NIH has done additional follow-up treatments whenever there was a chance it would get the patients disease-free, 4) No charges ever hit our insurance co-pays or deductibles, 5) If it doesn’t kill off 100% of the disease, you still have all other conventional therapies and most trials to turn to.
I think the key to success with this trial is to do it early. Ironically, you need to be fairly healthy (while mortally ill) to handle the treatment. But to answer your question, it was well worth it for us… life changing.

DH@Sleen:

Thanks for the information. I was just diagnosed in July and am still on my first line treatment so I know I am not yet eligible for the trial but I plan on applying to it as soon as I can while I am still in good health outside of the cancer. On the Clinical Trials website it seems to indicate you only need to have failed one first line treatment but I have seen in other places that you need to have failed on at least 2 treatments first, do you know what the actual criteria is? Also thanks for taking the time to respond going through this process is so difficult and being at the beginning of it it helps to have people willing to give advice and let you know about the process.

Re: TIL Immunotherapy at NCI

Posted: Fri Sep 15, 2017 3:14 pm
by DAS43
DH2Sleen wrote:
DAS43 wrote::D
Had my follow up at NIH today. The tumor has shrunk to 49.8% very happy and feel blessed. My next follow up will be in December.

Awesome!!!!!! So you are officially a Partial Responder now?

Yes I am :D

Re: TIL Immunotherapy at NCI

Posted: Fri Sep 15, 2017 6:22 pm
by Sleen
pdp497 wrote:On the Clinical Trials website it seems to indicate you only need to have failed one first line treatment but I have seen in other places that you need to have failed on at least 2 treatments first, do you know what the actual criteria is? Also thanks for taking the time to respond going through this process is so difficult and being at the beginning of it it helps to have people willing to give advice and let you know about the process.


Hi pdp!
At the .gov website under "Inclusion Criteria" it says (among other things), "...All patients must be refractory to approved standard systemic therapy. Specifically : Metastatic colorectal patients must have received oxaliplatin or irinotecan."

When I was accepted onto the trial, I had previously only undergone treatment with FOLFOX.

Celine