› Forums › General Melanoma Community › Question about TILS
- This topic has 24 replies, 3 voices, and was last updated 10 years ago by
_Paul_.
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- May 6, 2015 at 2:38 pm
Hi guys,
I always like to have a plan B for my husband here is a run down on my husband and the treatments he had had.
May 2007- stage 1 mole on right shoulder removed
Feb. 2, 2013- Yearly derm appt. dr feels enlarged node in right arm pit
Feb. 18, 2013- Meet with Mel specialist UVA- ATTEMPTS biopsy of node but only pulls fatty cells and spindle cells- Orders MRI AND CT
Feb. 23, 2013- MRI of brain clear- CT showed "snowstorm" small areas on right lung
March- Rt. Lung has biopsy- NEG (no cancer ) biopsy
April 2013- 6cm lump removed from right armpit and is POSITIVE for mel
May 2013- All nodes removed from right arm- NED
July 2013- Radiation to right armpit
Sept 2013- CT of chest ( was going to do a vaccine trial at UVA)- CT showed he was not NED and had bone met to lower spine
Nov 2013- IL2 – after 2 rounds scans show growth- Bone Mets
Feb 2014- starts Braf combo drugs- responded until July 2014- Bone mets
Sept 2014- starts IPI and receives all four doses ( scans show progression) Bone Mets( spine, hips, ribs and skull) Bone mets are to numerous to count and both Lungs have multiple mets.
2015- STARTS PD1
Which now brings use to May 2015- First set of PD1 scans showed 1 new tumor in lung and new adrenal gland- continued on with PD1 (giving plenty of time for PD1 to work) scan coming in one week- He has had a rib break in this time and pain in his spine which has lead to a X-RAY that showed a T-5 spinal tumor and radiation was given to the area- last week arm pain lead to large arm tumor being found and rod being placed in arm today.
Needless to say I am very nervous about next Mondays scans and wondering if anyone has any suggestions on our next step if PD1 is not our magic bullet…. Would he be someone who could even have TILS?
thank you
EMILY
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- May 6, 2015 at 9:18 pm
Hi Emily,
I have completed step 1 of 2 here in Seattle for TIL. Step 1 is the harvest of TIL cells from a resected tumor and Step 2 is the reinduction of lab enhanced T-cells back into the body. My harvest was a success and the T-cells are in cryogenic suspension awaiting use.
Here is a link for the trial: http://www.seattlecca.org/clinical-trials/melanoma-NCT01807182.cfm
Basicly they want to make sure the body is healthy enough to handle the protocol which is not an easy one. I had to have a breathing (MUGA) test and some blood work.
There are several locations around the country that are still recruiting for TIL. Here are some more links:
John Wayne Cancer Institute: https://clinicaltrials.gov/ct2/show/NCT02375984?term=TIL&rank=2
NCI: https://clinicaltrials.gov/ct2/show/NCT01993719?term=TIL&rank=11I got the above from searching https://clinicaltrials.gov/, but I did not do an exhaustive search and I only posted links to US sites.
Good luck and please keep us posted!
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- May 6, 2015 at 9:18 pm
Hi Emily,
I have completed step 1 of 2 here in Seattle for TIL. Step 1 is the harvest of TIL cells from a resected tumor and Step 2 is the reinduction of lab enhanced T-cells back into the body. My harvest was a success and the T-cells are in cryogenic suspension awaiting use.
Here is a link for the trial: http://www.seattlecca.org/clinical-trials/melanoma-NCT01807182.cfm
Basicly they want to make sure the body is healthy enough to handle the protocol which is not an easy one. I had to have a breathing (MUGA) test and some blood work.
There are several locations around the country that are still recruiting for TIL. Here are some more links:
John Wayne Cancer Institute: https://clinicaltrials.gov/ct2/show/NCT02375984?term=TIL&rank=2
NCI: https://clinicaltrials.gov/ct2/show/NCT01993719?term=TIL&rank=11I got the above from searching https://clinicaltrials.gov/, but I did not do an exhaustive search and I only posted links to US sites.
Good luck and please keep us posted!
-
- May 6, 2015 at 9:18 pm
Hi Emily,
I have completed step 1 of 2 here in Seattle for TIL. Step 1 is the harvest of TIL cells from a resected tumor and Step 2 is the reinduction of lab enhanced T-cells back into the body. My harvest was a success and the T-cells are in cryogenic suspension awaiting use.
Here is a link for the trial: http://www.seattlecca.org/clinical-trials/melanoma-NCT01807182.cfm
Basicly they want to make sure the body is healthy enough to handle the protocol which is not an easy one. I had to have a breathing (MUGA) test and some blood work.
There are several locations around the country that are still recruiting for TIL. Here are some more links:
John Wayne Cancer Institute: https://clinicaltrials.gov/ct2/show/NCT02375984?term=TIL&rank=2
NCI: https://clinicaltrials.gov/ct2/show/NCT01993719?term=TIL&rank=11I got the above from searching https://clinicaltrials.gov/, but I did not do an exhaustive search and I only posted links to US sites.
Good luck and please keep us posted!
-
- May 6, 2015 at 11:16 pm
Emily,
I completed TIL cell therapy at NIH back in 2010-11 NIH and had a partial response. Dr. Rosenberg at NIH was the originator of the treatment and many of the doctors implementing TIL programs elsewhere in the U.S. spent time at NIH working with him. The locations I know of that have active TIL programs for melanoma are NIH/NCI (that's the National Cancer Institute at the National Institutes of Health, part of the U.S. Department of Health and Human Services) in Bethesda, MD, MD Anderson Cancer Center in Houston, Moffitt Cancer Center in Tampa, and Fred Hutchinson Cancer Research Center (part of the Seattle Cancer Care Alliance as Paul mentioned above) in Seattle. I wasn't aware of a program at John Wayne Cancer Institute, but I've been out of the loop for a bit. I was fortunate to have a surgical oncologist at my cancer hospital in Philadelphia who had done a fellowship at NIH in immunotherapy and had stayed in touch with colleagues there, so when I was diagnosed as Stage IV, a week after my initial diagnosis, it was what he recommended we try (that was before Yervoy/ipi, BRAF, or any of the PD-1's were approved).There are variations on the protocol at different locations and I know at NIH, there are multiple trials with different tweaks to the protocol, but in essence, it's what Paul said: (1) surgically "harvest" a tumor from which TIL cells can be isolated, (2) wait 3-6 weeks for the cells to be multiplied in the lab to the 10-100 billion cell range, (3) return to the hospital for a week of chemotherapy (2 days of cyclophosphamide and 5 days of fludarabine) to wipe out your immune system (similar to a bone marrow transplant, but not nearly as severe), (4) receive the expanded TIL cells in an infusion — takes about 20 minutes, (5) undergo up to 15 doses of Interleukin-2 (IL-2) every eight hours (average person usually gets 6-8 doses before the body can't take any more) — the TILs are grown in IL-2 and it helps reconstitute the immune system, (6) recover from the IL-2 and return home. So two hospital stays, the first being for the harvest surgery and as long as it takes to recover. I needed two harvest surgeries (that's another story), the first was a simple one to remove the original lesion from my back and I was only in for two nights; the second was a small bowel resection that I was in for a week. The second stay where you get the chemotherapy, TIL cells, and IL-2, is from two to three weeks.Some keys to being eligible: You need to have a harvestable tumor, bone tumors typically aren't, it needs to be in the soft tissue and surgically accessible. You also need a second "measurable" tumor that can be used for ongoing monitoring of the effectiveness of the treatment — this is a requirement of being in a clinical trial. Again, bone tumors aren't eligible to be used for the measurable disease. None of this is to say that bone tumors make you ineligible, only that they aren't considered harvestable or measurable. If you have other tumors that can be used for those purposes, that's fine. Some trials allow brain metastases, some don't, and some have limitations on the number or size of brain metastases or their status. You also need to be strong enough to withstand the treatment, particularly the chemotherapy and IL-2 — each institution will have guidelines for this, but in particular, you're immune system shouldn't be already compromised. The risk of infection when your immune system has zero white blood cells is extremely high, so it should be strong enough to recover following the chemotherapy and TIL infusion. Last thing I can think of is that you must be a certain number of weeks past receiving some prior treatments, including most other immunotherapies like Yervoy or the anti-PD-1's, as well as prior treatments for brain metastases.Hope that helps,Joe-
- May 7, 2015 at 2:42 am
Joe- Awesome recap of TIL. I hope I don't have to go there, but that's what I'd be doing if Keytruda stops working its magic. My TIL cells have already been harvested. Thanks again. Matt
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- May 11, 2015 at 10:59 pm
Matt,
By the way, I was just reading your profile and it sounded familiar. Was your brother posting last fall over on the MIF forums as TeamMatt? I answered a few questions over there, including some information about TIL. I ran into some complications (not related to TIL) as fall turned into winter and ended up in four hospitals over three months (you can click my profile to find my recent update on all that happened if you're interested). Anyway, I lost track of "Matt" from TeamMatt and was wondering how things were going. Sounds like thinks are going well with Keytruda at IU?Best,Joe -
- May 11, 2015 at 10:59 pm
Matt,
By the way, I was just reading your profile and it sounded familiar. Was your brother posting last fall over on the MIF forums as TeamMatt? I answered a few questions over there, including some information about TIL. I ran into some complications (not related to TIL) as fall turned into winter and ended up in four hospitals over three months (you can click my profile to find my recent update on all that happened if you're interested). Anyway, I lost track of "Matt" from TeamMatt and was wondering how things were going. Sounds like thinks are going well with Keytruda at IU?Best,Joe -
- May 11, 2015 at 10:59 pm
Matt,
By the way, I was just reading your profile and it sounded familiar. Was your brother posting last fall over on the MIF forums as TeamMatt? I answered a few questions over there, including some information about TIL. I ran into some complications (not related to TIL) as fall turned into winter and ended up in four hospitals over three months (you can click my profile to find my recent update on all that happened if you're interested). Anyway, I lost track of "Matt" from TeamMatt and was wondering how things were going. Sounds like thinks are going well with Keytruda at IU?Best,Joe -
- May 7, 2015 at 2:42 am
Joe- Awesome recap of TIL. I hope I don't have to go there, but that's what I'd be doing if Keytruda stops working its magic. My TIL cells have already been harvested. Thanks again. Matt
-
- May 7, 2015 at 2:42 am
Joe- Awesome recap of TIL. I hope I don't have to go there, but that's what I'd be doing if Keytruda stops working its magic. My TIL cells have already been harvested. Thanks again. Matt
-
- May 6, 2015 at 11:16 pm
Emily,
I completed TIL cell therapy at NIH back in 2010-11 NIH and had a partial response. Dr. Rosenberg at NIH was the originator of the treatment and many of the doctors implementing TIL programs elsewhere in the U.S. spent time at NIH working with him. The locations I know of that have active TIL programs for melanoma are NIH/NCI (that's the National Cancer Institute at the National Institutes of Health, part of the U.S. Department of Health and Human Services) in Bethesda, MD, MD Anderson Cancer Center in Houston, Moffitt Cancer Center in Tampa, and Fred Hutchinson Cancer Research Center (part of the Seattle Cancer Care Alliance as Paul mentioned above) in Seattle. I wasn't aware of a program at John Wayne Cancer Institute, but I've been out of the loop for a bit. I was fortunate to have a surgical oncologist at my cancer hospital in Philadelphia who had done a fellowship at NIH in immunotherapy and had stayed in touch with colleagues there, so when I was diagnosed as Stage IV, a week after my initial diagnosis, it was what he recommended we try (that was before Yervoy/ipi, BRAF, or any of the PD-1's were approved).There are variations on the protocol at different locations and I know at NIH, there are multiple trials with different tweaks to the protocol, but in essence, it's what Paul said: (1) surgically "harvest" a tumor from which TIL cells can be isolated, (2) wait 3-6 weeks for the cells to be multiplied in the lab to the 10-100 billion cell range, (3) return to the hospital for a week of chemotherapy (2 days of cyclophosphamide and 5 days of fludarabine) to wipe out your immune system (similar to a bone marrow transplant, but not nearly as severe), (4) receive the expanded TIL cells in an infusion — takes about 20 minutes, (5) undergo up to 15 doses of Interleukin-2 (IL-2) every eight hours (average person usually gets 6-8 doses before the body can't take any more) — the TILs are grown in IL-2 and it helps reconstitute the immune system, (6) recover from the IL-2 and return home. So two hospital stays, the first being for the harvest surgery and as long as it takes to recover. I needed two harvest surgeries (that's another story), the first was a simple one to remove the original lesion from my back and I was only in for two nights; the second was a small bowel resection that I was in for a week. The second stay where you get the chemotherapy, TIL cells, and IL-2, is from two to three weeks.Some keys to being eligible: You need to have a harvestable tumor, bone tumors typically aren't, it needs to be in the soft tissue and surgically accessible. You also need a second "measurable" tumor that can be used for ongoing monitoring of the effectiveness of the treatment — this is a requirement of being in a clinical trial. Again, bone tumors aren't eligible to be used for the measurable disease. None of this is to say that bone tumors make you ineligible, only that they aren't considered harvestable or measurable. If you have other tumors that can be used for those purposes, that's fine. Some trials allow brain metastases, some don't, and some have limitations on the number or size of brain metastases or their status. You also need to be strong enough to withstand the treatment, particularly the chemotherapy and IL-2 — each institution will have guidelines for this, but in particular, you're immune system shouldn't be already compromised. The risk of infection when your immune system has zero white blood cells is extremely high, so it should be strong enough to recover following the chemotherapy and TIL infusion. Last thing I can think of is that you must be a certain number of weeks past receiving some prior treatments, including most other immunotherapies like Yervoy or the anti-PD-1's, as well as prior treatments for brain metastases.Hope that helps,Joe -
- May 6, 2015 at 11:16 pm
Emily,
I completed TIL cell therapy at NIH back in 2010-11 NIH and had a partial response. Dr. Rosenberg at NIH was the originator of the treatment and many of the doctors implementing TIL programs elsewhere in the U.S. spent time at NIH working with him. The locations I know of that have active TIL programs for melanoma are NIH/NCI (that's the National Cancer Institute at the National Institutes of Health, part of the U.S. Department of Health and Human Services) in Bethesda, MD, MD Anderson Cancer Center in Houston, Moffitt Cancer Center in Tampa, and Fred Hutchinson Cancer Research Center (part of the Seattle Cancer Care Alliance as Paul mentioned above) in Seattle. I wasn't aware of a program at John Wayne Cancer Institute, but I've been out of the loop for a bit. I was fortunate to have a surgical oncologist at my cancer hospital in Philadelphia who had done a fellowship at NIH in immunotherapy and had stayed in touch with colleagues there, so when I was diagnosed as Stage IV, a week after my initial diagnosis, it was what he recommended we try (that was before Yervoy/ipi, BRAF, or any of the PD-1's were approved).There are variations on the protocol at different locations and I know at NIH, there are multiple trials with different tweaks to the protocol, but in essence, it's what Paul said: (1) surgically "harvest" a tumor from which TIL cells can be isolated, (2) wait 3-6 weeks for the cells to be multiplied in the lab to the 10-100 billion cell range, (3) return to the hospital for a week of chemotherapy (2 days of cyclophosphamide and 5 days of fludarabine) to wipe out your immune system (similar to a bone marrow transplant, but not nearly as severe), (4) receive the expanded TIL cells in an infusion — takes about 20 minutes, (5) undergo up to 15 doses of Interleukin-2 (IL-2) every eight hours (average person usually gets 6-8 doses before the body can't take any more) — the TILs are grown in IL-2 and it helps reconstitute the immune system, (6) recover from the IL-2 and return home. So two hospital stays, the first being for the harvest surgery and as long as it takes to recover. I needed two harvest surgeries (that's another story), the first was a simple one to remove the original lesion from my back and I was only in for two nights; the second was a small bowel resection that I was in for a week. The second stay where you get the chemotherapy, TIL cells, and IL-2, is from two to three weeks.Some keys to being eligible: You need to have a harvestable tumor, bone tumors typically aren't, it needs to be in the soft tissue and surgically accessible. You also need a second "measurable" tumor that can be used for ongoing monitoring of the effectiveness of the treatment — this is a requirement of being in a clinical trial. Again, bone tumors aren't eligible to be used for the measurable disease. None of this is to say that bone tumors make you ineligible, only that they aren't considered harvestable or measurable. If you have other tumors that can be used for those purposes, that's fine. Some trials allow brain metastases, some don't, and some have limitations on the number or size of brain metastases or their status. You also need to be strong enough to withstand the treatment, particularly the chemotherapy and IL-2 — each institution will have guidelines for this, but in particular, you're immune system shouldn't be already compromised. The risk of infection when your immune system has zero white blood cells is extremely high, so it should be strong enough to recover following the chemotherapy and TIL infusion. Last thing I can think of is that you must be a certain number of weeks past receiving some prior treatments, including most other immunotherapies like Yervoy or the anti-PD-1's, as well as prior treatments for brain metastases.Hope that helps,Joe -
- May 11, 2015 at 10:27 pm
Thanks Matt… Good point Matt mentioned that I neglected to include in my post. Some facilities offer a TIL "banking" option whereby you can have the TILs harvested, grown, and frozen for potential later use. If you have other options to explore or try, like the anti-PD-1's, first, then the TILs are available as an option later if needed, without having to wait for a new "harvestable" tumor to appear or wait for the 3-6 week process of growing them. I know of others who have done this. The only place I know for sure that offers it is MD Anderson, but there may be others, and I don't believe NIH does it — certainly worth asking about wherever you go if you are considering TIL.
Joe -
- May 11, 2015 at 10:27 pm
Thanks Matt… Good point Matt mentioned that I neglected to include in my post. Some facilities offer a TIL "banking" option whereby you can have the TILs harvested, grown, and frozen for potential later use. If you have other options to explore or try, like the anti-PD-1's, first, then the TILs are available as an option later if needed, without having to wait for a new "harvestable" tumor to appear or wait for the 3-6 week process of growing them. I know of others who have done this. The only place I know for sure that offers it is MD Anderson, but there may be others, and I don't believe NIH does it — certainly worth asking about wherever you go if you are considering TIL.
Joe-
- May 12, 2015 at 4:46 pm
That's great Paul. I wasn't sure if you meant you were preparing to go back soon or if they were "on ice", so to speak, for some potential future need. Regardless, thanks for the clarification. Are you at "The Fred Hutch" or do multiple locations within SCCA offer TIL cell therapy now?
Best, Joe
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- May 12, 2015 at 4:46 pm
That's great Paul. I wasn't sure if you meant you were preparing to go back soon or if they were "on ice", so to speak, for some potential future need. Regardless, thanks for the clarification. Are you at "The Fred Hutch" or do multiple locations within SCCA offer TIL cell therapy now?
Best, Joe
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- May 12, 2015 at 4:46 pm
That's great Paul. I wasn't sure if you meant you were preparing to go back soon or if they were "on ice", so to speak, for some potential future need. Regardless, thanks for the clarification. Are you at "The Fred Hutch" or do multiple locations within SCCA offer TIL cell therapy now?
Best, Joe
-
- May 11, 2015 at 10:27 pm
Thanks Matt… Good point Matt mentioned that I neglected to include in my post. Some facilities offer a TIL "banking" option whereby you can have the TILs harvested, grown, and frozen for potential later use. If you have other options to explore or try, like the anti-PD-1's, first, then the TILs are available as an option later if needed, without having to wait for a new "harvestable" tumor to appear or wait for the 3-6 week process of growing them. I know of others who have done this. The only place I know for sure that offers it is MD Anderson, but there may be others, and I don't believe NIH does it — certainly worth asking about wherever you go if you are considering TIL.
Joe
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Tagged: cutaneous melanoma
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