› Forums › General Melanoma Community › TIL
- This topic has 15 replies, 5 voices, and was last updated 9 years, 7 months ago by Ninniditti.
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- September 7, 2014 at 1:06 pm
Hi!Has someone here had TIL therapy. I have not read about someone having good results from it. I am not sure if I dare to have it. I have done IPI and NIVO with no result.
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- September 7, 2014 at 4:19 pm
Wow. That must be devestating. zel, ipi, taf/mek all failed me at the first scan. Fortunately merck's pd1 is having some results. They say I'm a mixed responder but there are lots more shrinking than are growing. After the first scan they are still keeping me on it.
So yeah if pd1 did not work my plan b was Dr. Rosenberg's TIL/ACT stuff.
Here's a link to a pretty good article on it:
http://www.cancer.gov/ncicancerbulletin/050112/page4
I really liked this part of the article:
"The results to date are impressive. Of the 93 patients treated in the three trials, 20 have seen their tumors disappear completely (complete response); 19 of those 20 have remained tumor-free for longer than 5 years. (Most of these patients' tumors had not responded to other immunotherapy treatments.) Overall, tumors shrank substantially in 52 patients."
Search here did not show it for me but there was quite a lot of talk about people having been on it here I think back in June. Of course everyone is different but those numbers seem pretty good to me if I read it right. About a 50/50 chance of being a responder is pretty good with this stuff I think. Of course 100% would be ideal.
Like someone here said to me when every medicine was failing you gotta stay strong and get to that next treatment. You only have to find that one that will work for you.
Good luck to you Inger.
Artie
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- September 7, 2014 at 4:30 pm
Hi Inger,
Sorry that you are still having to struggle to find a treatment that will help you. I have never done TIL. It is a complicated, and somewhat risky, venture for certain. I know that many institutions are having success in TIL patients, however, I think the numbers of good responses are still best at NIH if that matters. Here a link to a brave melanoma patient, Alisa, who recently had TIL and is having a good response. I don't think she would mind my posting that here, as she posts occasionally herself and in her blog, welcomed contact and questions from others.
http://joshalisa.blogspot.com/
Good luck with whatever you decide to pursue. Yours, Celeste
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- September 7, 2014 at 4:30 pm
Hi Inger,
Sorry that you are still having to struggle to find a treatment that will help you. I have never done TIL. It is a complicated, and somewhat risky, venture for certain. I know that many institutions are having success in TIL patients, however, I think the numbers of good responses are still best at NIH if that matters. Here a link to a brave melanoma patient, Alisa, who recently had TIL and is having a good response. I don't think she would mind my posting that here, as she posts occasionally herself and in her blog, welcomed contact and questions from others.
http://joshalisa.blogspot.com/
Good luck with whatever you decide to pursue. Yours, Celeste
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- September 7, 2014 at 4:30 pm
Hi Inger,
Sorry that you are still having to struggle to find a treatment that will help you. I have never done TIL. It is a complicated, and somewhat risky, venture for certain. I know that many institutions are having success in TIL patients, however, I think the numbers of good responses are still best at NIH if that matters. Here a link to a brave melanoma patient, Alisa, who recently had TIL and is having a good response. I don't think she would mind my posting that here, as she posts occasionally herself and in her blog, welcomed contact and questions from others.
http://joshalisa.blogspot.com/
Good luck with whatever you decide to pursue. Yours, Celeste
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- September 7, 2014 at 4:19 pm
Wow. That must be devestating. zel, ipi, taf/mek all failed me at the first scan. Fortunately merck's pd1 is having some results. They say I'm a mixed responder but there are lots more shrinking than are growing. After the first scan they are still keeping me on it.
So yeah if pd1 did not work my plan b was Dr. Rosenberg's TIL/ACT stuff.
Here's a link to a pretty good article on it:
http://www.cancer.gov/ncicancerbulletin/050112/page4
I really liked this part of the article:
"The results to date are impressive. Of the 93 patients treated in the three trials, 20 have seen their tumors disappear completely (complete response); 19 of those 20 have remained tumor-free for longer than 5 years. (Most of these patients' tumors had not responded to other immunotherapy treatments.) Overall, tumors shrank substantially in 52 patients."
Search here did not show it for me but there was quite a lot of talk about people having been on it here I think back in June. Of course everyone is different but those numbers seem pretty good to me if I read it right. About a 50/50 chance of being a responder is pretty good with this stuff I think. Of course 100% would be ideal.
Like someone here said to me when every medicine was failing you gotta stay strong and get to that next treatment. You only have to find that one that will work for you.
Good luck to you Inger.
Artie
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- September 7, 2014 at 4:19 pm
Wow. That must be devestating. zel, ipi, taf/mek all failed me at the first scan. Fortunately merck's pd1 is having some results. They say I'm a mixed responder but there are lots more shrinking than are growing. After the first scan they are still keeping me on it.
So yeah if pd1 did not work my plan b was Dr. Rosenberg's TIL/ACT stuff.
Here's a link to a pretty good article on it:
http://www.cancer.gov/ncicancerbulletin/050112/page4
I really liked this part of the article:
"The results to date are impressive. Of the 93 patients treated in the three trials, 20 have seen their tumors disappear completely (complete response); 19 of those 20 have remained tumor-free for longer than 5 years. (Most of these patients' tumors had not responded to other immunotherapy treatments.) Overall, tumors shrank substantially in 52 patients."
Search here did not show it for me but there was quite a lot of talk about people having been on it here I think back in June. Of course everyone is different but those numbers seem pretty good to me if I read it right. About a 50/50 chance of being a responder is pretty good with this stuff I think. Of course 100% would be ideal.
Like someone here said to me when every medicine was failing you gotta stay strong and get to that next treatment. You only have to find that one that will work for you.
Good luck to you Inger.
Artie
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- September 7, 2014 at 6:07 pm
Hello, sorry to hear that you haven't had results from either ipi or nivo. I was in a TIL trial at NIH back in 2010-11 and had a partial response. In the weeks following treatment, I could see in the mirror the one visible tumor I had (in the soft tissue outside my skull in my right temple) literally melt away and it and the other two active tumors I had at the time (on my internal chest wall and left underarm) both responded completely within about 3 months. I eventually had disease progression, mostly in the "long bones" of my legs, femur and tibia, but my doctors all believe that the TIL has played an ongoing role in slowing progression so we've been able to address metastases with radiation and/or surgery. My TIL story is a little complicated, but it was essentially the first treatment I tried after I was diagnosed at Stage IV in the summer of 2010 — neither ipi or the BRAF inhibitors had been approved and nivo wasn't even in trials then.
I'm glad to answer any questions you have about TIL or NIH, I'll keep an eye on this thread for other questions. I'm not sure him much detail you'd like and as I said, my case has been complicated, lots of twists and turns, so documenting it in a single post would be hard. But I consider that I had a good response to TIL and knowing what I know now, I would go through it again.
Joe
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- September 7, 2014 at 6:07 pm
Hello, sorry to hear that you haven't had results from either ipi or nivo. I was in a TIL trial at NIH back in 2010-11 and had a partial response. In the weeks following treatment, I could see in the mirror the one visible tumor I had (in the soft tissue outside my skull in my right temple) literally melt away and it and the other two active tumors I had at the time (on my internal chest wall and left underarm) both responded completely within about 3 months. I eventually had disease progression, mostly in the "long bones" of my legs, femur and tibia, but my doctors all believe that the TIL has played an ongoing role in slowing progression so we've been able to address metastases with radiation and/or surgery. My TIL story is a little complicated, but it was essentially the first treatment I tried after I was diagnosed at Stage IV in the summer of 2010 — neither ipi or the BRAF inhibitors had been approved and nivo wasn't even in trials then.
I'm glad to answer any questions you have about TIL or NIH, I'll keep an eye on this thread for other questions. I'm not sure him much detail you'd like and as I said, my case has been complicated, lots of twists and turns, so documenting it in a single post would be hard. But I consider that I had a good response to TIL and knowing what I know now, I would go through it again.
Joe
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- September 7, 2014 at 6:07 pm
Hello, sorry to hear that you haven't had results from either ipi or nivo. I was in a TIL trial at NIH back in 2010-11 and had a partial response. In the weeks following treatment, I could see in the mirror the one visible tumor I had (in the soft tissue outside my skull in my right temple) literally melt away and it and the other two active tumors I had at the time (on my internal chest wall and left underarm) both responded completely within about 3 months. I eventually had disease progression, mostly in the "long bones" of my legs, femur and tibia, but my doctors all believe that the TIL has played an ongoing role in slowing progression so we've been able to address metastases with radiation and/or surgery. My TIL story is a little complicated, but it was essentially the first treatment I tried after I was diagnosed at Stage IV in the summer of 2010 — neither ipi or the BRAF inhibitors had been approved and nivo wasn't even in trials then.
I'm glad to answer any questions you have about TIL or NIH, I'll keep an eye on this thread for other questions. I'm not sure him much detail you'd like and as I said, my case has been complicated, lots of twists and turns, so documenting it in a single post would be hard. But I consider that I had a good response to TIL and knowing what I know now, I would go through it again.
Joe
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- September 8, 2014 at 9:52 am
Thank you Artie and good luck to you too! After reading the article you send (your link), I want to try yit. There is a trial in Stockholm and i have asked my oncologist to try and get me in there.Thank you Celeste, I have read Alisas blog and it doesn't stop me from wanting to try. And thank you Jualonso for your reply. I suppose it costs a lot but I want to be in a study in Stockholm which is free.Thank you Joe, your answer was encouraging, i suppose I have qustions to ask if I get into the trial.I really appreciate your answes. How difficult it had been if this forum didn't exist. -
- September 8, 2014 at 9:52 am
Thank you Artie and good luck to you too! After reading the article you send (your link), I want to try yit. There is a trial in Stockholm and i have asked my oncologist to try and get me in there.Thank you Celeste, I have read Alisas blog and it doesn't stop me from wanting to try. And thank you Jualonso for your reply. I suppose it costs a lot but I want to be in a study in Stockholm which is free.Thank you Joe, your answer was encouraging, i suppose I have qustions to ask if I get into the trial.I really appreciate your answes. How difficult it had been if this forum didn't exist. -
- September 8, 2014 at 9:52 am
Thank you Artie and good luck to you too! After reading the article you send (your link), I want to try yit. There is a trial in Stockholm and i have asked my oncologist to try and get me in there.Thank you Celeste, I have read Alisas blog and it doesn't stop me from wanting to try. And thank you Jualonso for your reply. I suppose it costs a lot but I want to be in a study in Stockholm which is free.Thank you Joe, your answer was encouraging, i suppose I have qustions to ask if I get into the trial.I really appreciate your answes. How difficult it had been if this forum didn't exist.
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