› Forums › General Melanoma Community › ACT/ TIL Treatment
- This topic has 33 replies, 5 voices, and was last updated 9 years, 10 months ago by
scots.
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- January 15, 2016 at 1:23 pm
Has anyone recently been through this treatment? I have read several articles/stories about this treatment but they all seem to be 3 to 4 years old so I do not know where they are now. I'm looking at the trial at NIH. I'm looking for some other treatments because ippi/ nivo did not work for me and I'm braf negative. I'm also looking at another trial at Duke and I'm working on a consult at MSKCC for a different opinion. I'm leaning towards the trail and if that treatment dose not work then I will try the the TIL treatment.
thanks
scot
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- January 15, 2016 at 5:11 pm
Hey Scot. I have not had TIL, but I did have a tumor harvested and my cells are waiting in case I ever need them for treatment. If Opdivo ever fails me, TIL is my backup.
Ashley
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- January 15, 2016 at 9:26 pm
What hospital would you be getting the treatment from? I like the idea of harvesting the tumor to use down the road. Right now I leaning towards a clinical trial as the first option. If the trial dose not produce results then going for the TIL treatment. Right now my doctor doesn't think I have time to be off treatment the amount of time it takes to get the TIL process started.
thank for your response and I hope the Opdivo continues to work for you.
Scot
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- January 15, 2016 at 9:26 pm
What hospital would you be getting the treatment from? I like the idea of harvesting the tumor to use down the road. Right now I leaning towards a clinical trial as the first option. If the trial dose not produce results then going for the TIL treatment. Right now my doctor doesn't think I have time to be off treatment the amount of time it takes to get the TIL process started.
thank for your response and I hope the Opdivo continues to work for you.
Scot
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- January 16, 2016 at 8:02 pm
I live in North Dakota and receive my infusions here. Last spring I moved my family to Texas to go to MD Anderson for 3.5 months. I was on the (then trial) ipi/nivo combo. Before I started the trial they harvested the tumor from my right shoulder blade. Part of the reason I chose MDA is because they offer TIL.
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- January 16, 2016 at 8:02 pm
I live in North Dakota and receive my infusions here. Last spring I moved my family to Texas to go to MD Anderson for 3.5 months. I was on the (then trial) ipi/nivo combo. Before I started the trial they harvested the tumor from my right shoulder blade. Part of the reason I chose MDA is because they offer TIL.
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- January 16, 2016 at 8:02 pm
I live in North Dakota and receive my infusions here. Last spring I moved my family to Texas to go to MD Anderson for 3.5 months. I was on the (then trial) ipi/nivo combo. Before I started the trial they harvested the tumor from my right shoulder blade. Part of the reason I chose MDA is because they offer TIL.
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- January 15, 2016 at 9:26 pm
What hospital would you be getting the treatment from? I like the idea of harvesting the tumor to use down the road. Right now I leaning towards a clinical trial as the first option. If the trial dose not produce results then going for the TIL treatment. Right now my doctor doesn't think I have time to be off treatment the amount of time it takes to get the TIL process started.
thank for your response and I hope the Opdivo continues to work for you.
Scot
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- January 15, 2016 at 6:39 pm
I recently completed the Til treatment . It was highly recommended to me when scans indicated progression after three years of stability with Ipi/Nivo. I tried Traf/Mek first but it proved difficult to bear. The Til treatment went well– a couple of tough weeks but then it's over. The jury is still out on its effectiveness– but after a month there has been no more progression — and even some shrinkage in tumor size– so I'm hopeful.
My doctor told me that the hardest part of Til is getting into the trial.. It seems there are numerous points along the procedure timeline where you can be disqualified from continuing—even close infusion day. So we had a couple of scares. It's a lengthy process, and you need to wash out of the current treatment before they harvest a tumor…..so by the time you're actually infused it could be more than three months–which is really creepy when your progressing– Though in my case the progression helped a bit by producing a nice big tumor in a very accessible location…… You gotta look on the bright side.
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- January 15, 2016 at 6:39 pm
I recently completed the Til treatment . It was highly recommended to me when scans indicated progression after three years of stability with Ipi/Nivo. I tried Traf/Mek first but it proved difficult to bear. The Til treatment went well– a couple of tough weeks but then it's over. The jury is still out on its effectiveness– but after a month there has been no more progression — and even some shrinkage in tumor size– so I'm hopeful.
My doctor told me that the hardest part of Til is getting into the trial.. It seems there are numerous points along the procedure timeline where you can be disqualified from continuing—even close infusion day. So we had a couple of scares. It's a lengthy process, and you need to wash out of the current treatment before they harvest a tumor…..so by the time you're actually infused it could be more than three months–which is really creepy when your progressing– Though in my case the progression helped a bit by producing a nice big tumor in a very accessible location…… You gotta look on the bright side.
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- January 15, 2016 at 9:39 pm
Where did you receive your treatment? My doctor discussed the TIL treatment with me,but she dose not think I have the time to be off treatment for that long while I have a clinical that I could try. I have not washed out of my current treatment yet so that poses a time problem. I have been talking to NIH about starting the approval process TIL. I think TIL maybe my back up plan unless the trial dose not work out. Thanks for your reply and I hope the TIL treatment continues to work for you.
scot
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- January 15, 2016 at 9:39 pm
Where did you receive your treatment? My doctor discussed the TIL treatment with me,but she dose not think I have the time to be off treatment for that long while I have a clinical that I could try. I have not washed out of my current treatment yet so that poses a time problem. I have been talking to NIH about starting the approval process TIL. I think TIL maybe my back up plan unless the trial dose not work out. Thanks for your reply and I hope the TIL treatment continues to work for you.
scot
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- January 15, 2016 at 9:39 pm
Where did you receive your treatment? My doctor discussed the TIL treatment with me,but she dose not think I have the time to be off treatment for that long while I have a clinical that I could try. I have not washed out of my current treatment yet so that poses a time problem. I have been talking to NIH about starting the approval process TIL. I think TIL maybe my back up plan unless the trial dose not work out. Thanks for your reply and I hope the TIL treatment continues to work for you.
scot
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- January 15, 2016 at 6:39 pm
I recently completed the Til treatment . It was highly recommended to me when scans indicated progression after three years of stability with Ipi/Nivo. I tried Traf/Mek first but it proved difficult to bear. The Til treatment went well– a couple of tough weeks but then it's over. The jury is still out on its effectiveness– but after a month there has been no more progression — and even some shrinkage in tumor size– so I'm hopeful.
My doctor told me that the hardest part of Til is getting into the trial.. It seems there are numerous points along the procedure timeline where you can be disqualified from continuing—even close infusion day. So we had a couple of scares. It's a lengthy process, and you need to wash out of the current treatment before they harvest a tumor…..so by the time you're actually infused it could be more than three months–which is really creepy when your progressing– Though in my case the progression helped a bit by producing a nice big tumor in a very accessible location…… You gotta look on the bright side.
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- January 16, 2016 at 5:16 am
Hi Scot,
I've never had TIL. I flew to MDA a few years ago once to look into my eligibility.
My clinical trial coordinator at Portland Providence mentioned they've started doing a form of TIL. They have this trial (also at Moffitt, Yale and Morristown NJ): https://clinicaltrials.gov/ct2/show/NCT02360579
They also have a lot of other clinical trials with therapies on pathways that aren't PD1 or CTLA-4 (IPI), like: Galectin inhibitor, Cavatak, AKT inihibitor, Enoblituzumab, SEA-CD40, OX40, Varlilumab, anti-PD-L1, alpha-TEA, Urelumab, and anti-LAG-3. Some are under the "cutaneous (skin)" category, some under "multiple tumor types" categories, http://oregon.providence.org/clinical-trials/.
The clinical trial I got into is listed at various places under "solid tumors", "multiple tumor types", etc. but not under melanoma, even though there is a melanom arm along with other arms for other cancer types.
I met someone at a support group once a couple of years ago who got a fantastic response to an AKT inhibitor. Don't know long term, but said he got a super fast response with a heavy tumor load. That's a one person, n=1 anecdote.
Good luck in your search. Kyle
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- January 16, 2016 at 5:16 am
Hi Scot,
I've never had TIL. I flew to MDA a few years ago once to look into my eligibility.
My clinical trial coordinator at Portland Providence mentioned they've started doing a form of TIL. They have this trial (also at Moffitt, Yale and Morristown NJ): https://clinicaltrials.gov/ct2/show/NCT02360579
They also have a lot of other clinical trials with therapies on pathways that aren't PD1 or CTLA-4 (IPI), like: Galectin inhibitor, Cavatak, AKT inihibitor, Enoblituzumab, SEA-CD40, OX40, Varlilumab, anti-PD-L1, alpha-TEA, Urelumab, and anti-LAG-3. Some are under the "cutaneous (skin)" category, some under "multiple tumor types" categories, http://oregon.providence.org/clinical-trials/.
The clinical trial I got into is listed at various places under "solid tumors", "multiple tumor types", etc. but not under melanoma, even though there is a melanom arm along with other arms for other cancer types.
I met someone at a support group once a couple of years ago who got a fantastic response to an AKT inhibitor. Don't know long term, but said he got a super fast response with a heavy tumor load. That's a one person, n=1 anecdote.
Good luck in your search. Kyle
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- January 16, 2016 at 5:16 am
Hi Scot,
I've never had TIL. I flew to MDA a few years ago once to look into my eligibility.
My clinical trial coordinator at Portland Providence mentioned they've started doing a form of TIL. They have this trial (also at Moffitt, Yale and Morristown NJ): https://clinicaltrials.gov/ct2/show/NCT02360579
They also have a lot of other clinical trials with therapies on pathways that aren't PD1 or CTLA-4 (IPI), like: Galectin inhibitor, Cavatak, AKT inihibitor, Enoblituzumab, SEA-CD40, OX40, Varlilumab, anti-PD-L1, alpha-TEA, Urelumab, and anti-LAG-3. Some are under the "cutaneous (skin)" category, some under "multiple tumor types" categories, http://oregon.providence.org/clinical-trials/.
The clinical trial I got into is listed at various places under "solid tumors", "multiple tumor types", etc. but not under melanoma, even though there is a melanom arm along with other arms for other cancer types.
I met someone at a support group once a couple of years ago who got a fantastic response to an AKT inhibitor. Don't know long term, but said he got a super fast response with a heavy tumor load. That's a one person, n=1 anecdote.
Good luck in your search. Kyle
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