RJoeyB
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RJoeyB

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      • May 11, 2015 at 10:27 pm
      RJoeyB
      Participant

      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
      RJoeyB
      Participant

      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
      RJoeyB
      Participant

      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 6, 2015 at 11:16 pm
      RJoeyB
      Participant

      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
      RJoeyB
      Participant

      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
      RJoeyB
      Participant

      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 5, 2015 at 7:48 pm
      RJoeyB
      Participant
      Hi,
       
      I've had a number of bone tumors (not as many as Artie!) in three of the four "long bones" of my legs and also in my left shoulder.  Some have been symptomatic, some not.  My shoulder had 10% bone mass where the tumor was and it was only a dull ache.  I had two small tumors in my left tibia that had dull pain when I went for my first run after a treatment in 2011 — sort of like shin splints, but I'd never had shin splints before, and I knew it wasn't muscular.  I mentioned it to my doctors and they had me do an x-ray and then MRI and found two small spots.  Others that were larger had no pain or anything.  Then I had pain similar to what you describe and was convinced there was something in my hip or leg that I mentioned several times to my doctors, but on successive scans, nothing showed up.  Eventually I lost some weight (on purpose) and as I did, the pain improved.
       
      Moral of the story?  Mention it to your doctors so they can take a look, but there can be a lot of non-melanoma causes of bone pain, so try not to let your mind go wild convinced it's a new metastasis — I know, easier said than done.
       
      Best,
      Joe

       

       
      • May 5, 2015 at 7:48 pm
      RJoeyB
      Participant
      Hi,
       
      I've had a number of bone tumors (not as many as Artie!) in three of the four "long bones" of my legs and also in my left shoulder.  Some have been symptomatic, some not.  My shoulder had 10% bone mass where the tumor was and it was only a dull ache.  I had two small tumors in my left tibia that had dull pain when I went for my first run after a treatment in 2011 — sort of like shin splints, but I'd never had shin splints before, and I knew it wasn't muscular.  I mentioned it to my doctors and they had me do an x-ray and then MRI and found two small spots.  Others that were larger had no pain or anything.  Then I had pain similar to what you describe and was convinced there was something in my hip or leg that I mentioned several times to my doctors, but on successive scans, nothing showed up.  Eventually I lost some weight (on purpose) and as I did, the pain improved.
       
      Moral of the story?  Mention it to your doctors so they can take a look, but there can be a lot of non-melanoma causes of bone pain, so try not to let your mind go wild convinced it's a new metastasis — I know, easier said than done.
       
      Best,
      Joe

       

       
      • May 5, 2015 at 7:48 pm
      RJoeyB
      Participant
      Hi,
       
      I've had a number of bone tumors (not as many as Artie!) in three of the four "long bones" of my legs and also in my left shoulder.  Some have been symptomatic, some not.  My shoulder had 10% bone mass where the tumor was and it was only a dull ache.  I had two small tumors in my left tibia that had dull pain when I went for my first run after a treatment in 2011 — sort of like shin splints, but I'd never had shin splints before, and I knew it wasn't muscular.  I mentioned it to my doctors and they had me do an x-ray and then MRI and found two small spots.  Others that were larger had no pain or anything.  Then I had pain similar to what you describe and was convinced there was something in my hip or leg that I mentioned several times to my doctors, but on successive scans, nothing showed up.  Eventually I lost some weight (on purpose) and as I did, the pain improved.
       
      Moral of the story?  Mention it to your doctors so they can take a look, but there can be a lot of non-melanoma causes of bone pain, so try not to let your mind go wild convinced it's a new metastasis — I know, easier said than done.
       
      Best,
      Joe

       

       
      • May 12, 2015 at 4:46 pm
      RJoeyB
      Participant

      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 12, 2015 at 4:46 pm
      RJoeyB
      Participant

      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 12, 2015 at 4:46 pm
      RJoeyB
      Participant

      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 10:59 pm
      RJoeyB
      Participant

      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
      RJoeyB
      Participant

      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
      RJoeyB
      Participant

      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 
       
Viewing 8 reply threads
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