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How long do they expect TIL to take to work?

Forums General Melanoma Community How long do they expect TIL to take to work?

  • Post
    arthurjedi007
    Participant

      I was wondering how long after the TIL treatment they have you come back for scans which I assume is to see if there are signs yet of it working?

      I'm trying to figure out my plan B of TIL. I know the intial wait for the visit. Then the harvest and if that's good the 6 weeks to cook up the cells. Then the week of depletion. The new cells and week of whatever to stimulate which probably for me would be il-2. After that I'm not sure.

      Still hoping for plan A of pd1 to be fantastic. Got a good start with over a dozen tumors shrinking and scans in a couple weeks I hope will show great. But pretty much overnight I lost some functionality of my left leg. Like if I'm sitting in a chair I can't lift my foot off the floor. But standing I can and walking is getting better without much pain. Also not as much pain in lower back and left hip. I also noticed in my last scan report there were 7 growing tumors instead of 5. So dunno if the leg issue is due to the left sacral ala tumor or what. I just finished radiation to lower spine and head last Monday and 7th pd1 Tuesday so haven't really felt like fighting another round of something going wrong. The leg issue started Monday morning.

      Thanks,

      Artie

       

    Viewing 17 reply threads
    • Replies
        RJoeyB
        Participant

          Hi Artie,

          Still praying for the PD-1 and radiation for you, of course, but to answer your question…  at NIH, the rough schedule was:

          1) Intake visit.

          2) Harvest surgery, about a week later.  You'll also have apheresis a.k.a. leukapheresis to extract white blood cells for measurement and use in growing the harvested cells.

          3) Grow cells — probably closer to 4-5 weeks than 6, but of course this is variable.  Also note that cells don't always grow, I've heard a rough estimate (very rough) that they get a viable batch about 80% of the time.  But typically they know within 7-10 days if the batch will grow and grow at an acceptable rate.  I had some complications here, the first batch grew too slowly but then later on sped up and could have been used, and the ones from a second harvest grew in three weeks and were ready to go early.

          4) Assuming a viable batch, figure on being back to the hospital 4-5 weeks after harvest (and again, MDA and Moffitt could be different) for prep, like placement of chest catheter, etc., then starting lymphoidepletion.  Typically that's 2 days of cyclophosphamide followed by 5 days of fludarabine (very precise schedule, every 21 hours).  Some trials have added total body irradiation (TBI) into their experimental arms, but not interfering with the lymphoidepletion schedule.  Most importantly here, before starting any lymphodepletion they have a formal certification process to ensure that the TIL cells are indeed ready (they don't want to lymphodeplete without a way to reconstitute!)

          5) Like clockwork, on day 0, your WBC will also hit 0 and you get your cells.  The infusion is uneventful, but momentous (take a picture of that bag of what looks like chicken broth ;-).  It takes about 20 minutes.

          6) Within hours is the first IV bolus of IL-2.  Each subsequent dose will be every 8 hours, continuing for up to 15 doses, so figure 3-5 days of IL-2 dosing and another two days for recovery from IL-2.  From admission to discharge, the stay is about 2.5 weeks.

          7) I saw a subcutaneous tumor in my right temple start to shrink before I was discharged, but everyone is different, and they don't always expect that.

          8) First scans were 6 weeks after infusion day (so more like 5 weeks after discharge).

          9) Even if they don't see results then, doesn't mean it hasn't worked, but they may do another apheresis to measure the WBC and TIL activity in the blood.  My chest catheter came out at this appointment, too.  They left it in just for the apheresis, even though apheresis can be done without the catheter.

          10) Another set of scans 6 weeks later and from there settle on another 6 weeks or moving to a 12 week schedule.

          I hope that helps Artie.  Like I said, I'm still praying for your current plan, but have you thought about where you would go for TIL?  Do you have a resectable tumor in mind that would be used for the harvest?  Food for thought…

          Best, Joe

            RJoeyB
            Participant

              One other small note I left out of my last post Artie but is worth mentioning.  The two agents used in the chemotherapy lymphodepletion regimen are antineoplastic themselves, so they, too, can cause some tumor response, but it wouldn't be expected to last long.  When we quickly saw the subcutaneous lesion in the soft tissue of my right temple decreasing in size within a week of TIL infusion, we were almost afraid to hope it was working that quickly.  When we talked to my doctor, he said that, yes, a TIL response could happen that fast, but also cautioned that the chemotherapies could be responsible, too, but if the latter were the case, it wouldn't last.  At my first scan, however, it continued to shrink.  My other target tumors (chest wall and node in left underarm) didn't show much change at the 6 week scan (classified as "stable" by RECIST) , but started showing a response at the 12 week scan.  By the following scan, both the temple and chest wall lesions were completely gone and the underarm node was almost all necrotic.

              Joe

              RJoeyB
              Participant

                One other small note I left out of my last post Artie but is worth mentioning.  The two agents used in the chemotherapy lymphodepletion regimen are antineoplastic themselves, so they, too, can cause some tumor response, but it wouldn't be expected to last long.  When we quickly saw the subcutaneous lesion in the soft tissue of my right temple decreasing in size within a week of TIL infusion, we were almost afraid to hope it was working that quickly.  When we talked to my doctor, he said that, yes, a TIL response could happen that fast, but also cautioned that the chemotherapies could be responsible, too, but if the latter were the case, it wouldn't last.  At my first scan, however, it continued to shrink.  My other target tumors (chest wall and node in left underarm) didn't show much change at the 6 week scan (classified as "stable" by RECIST) , but started showing a response at the 12 week scan.  By the following scan, both the temple and chest wall lesions were completely gone and the underarm node was almost all necrotic.

                Joe

                arthurjedi007
                Participant

                  Thank you Joe. Yeah I was thinking NIH in Maryland. Everything at Moffit I'm disqualfied for cause of previous meds. Plus they haven't been doing it that long. MDA seems to still be running the same trial for years. So they are good at it but may not have to latest findings from Dr Rosenberg. I'm not aware of other places for melanoma TIL except for Seattle. So I'm thinking NIH is my best chance if I have to do this. But maybe that's just me and my thoughts on it.

                  Artie

                  arthurjedi007
                  Participant

                    Thank you Joe. Yeah I was thinking NIH in Maryland. Everything at Moffit I'm disqualfied for cause of previous meds. Plus they haven't been doing it that long. MDA seems to still be running the same trial for years. So they are good at it but may not have to latest findings from Dr Rosenberg. I'm not aware of other places for melanoma TIL except for Seattle. So I'm thinking NIH is my best chance if I have to do this. But maybe that's just me and my thoughts on it.

                    Artie

                    arthurjedi007
                    Participant

                      Thank you Joe. Yeah I was thinking NIH in Maryland. Everything at Moffit I'm disqualfied for cause of previous meds. Plus they haven't been doing it that long. MDA seems to still be running the same trial for years. So they are good at it but may not have to latest findings from Dr Rosenberg. I'm not aware of other places for melanoma TIL except for Seattle. So I'm thinking NIH is my best chance if I have to do this. But maybe that's just me and my thoughts on it.

                      Artie

                      RJoeyB
                      Participant

                        One other small note I left out of my last post Artie but is worth mentioning.  The two agents used in the chemotherapy lymphodepletion regimen are antineoplastic themselves, so they, too, can cause some tumor response, but it wouldn't be expected to last long.  When we quickly saw the subcutaneous lesion in the soft tissue of my right temple decreasing in size within a week of TIL infusion, we were almost afraid to hope it was working that quickly.  When we talked to my doctor, he said that, yes, a TIL response could happen that fast, but also cautioned that the chemotherapies could be responsible, too, but if the latter were the case, it wouldn't last.  At my first scan, however, it continued to shrink.  My other target tumors (chest wall and node in left underarm) didn't show much change at the 6 week scan (classified as "stable" by RECIST) , but started showing a response at the 12 week scan.  By the following scan, both the temple and chest wall lesions were completely gone and the underarm node was almost all necrotic.

                        Joe

                      RJoeyB
                      Participant

                        Hi Artie,

                        Still praying for the PD-1 and radiation for you, of course, but to answer your question…  at NIH, the rough schedule was:

                        1) Intake visit.

                        2) Harvest surgery, about a week later.  You'll also have apheresis a.k.a. leukapheresis to extract white blood cells for measurement and use in growing the harvested cells.

                        3) Grow cells — probably closer to 4-5 weeks than 6, but of course this is variable.  Also note that cells don't always grow, I've heard a rough estimate (very rough) that they get a viable batch about 80% of the time.  But typically they know within 7-10 days if the batch will grow and grow at an acceptable rate.  I had some complications here, the first batch grew too slowly but then later on sped up and could have been used, and the ones from a second harvest grew in three weeks and were ready to go early.

                        4) Assuming a viable batch, figure on being back to the hospital 4-5 weeks after harvest (and again, MDA and Moffitt could be different) for prep, like placement of chest catheter, etc., then starting lymphoidepletion.  Typically that's 2 days of cyclophosphamide followed by 5 days of fludarabine (very precise schedule, every 21 hours).  Some trials have added total body irradiation (TBI) into their experimental arms, but not interfering with the lymphoidepletion schedule.  Most importantly here, before starting any lymphodepletion they have a formal certification process to ensure that the TIL cells are indeed ready (they don't want to lymphodeplete without a way to reconstitute!)

                        5) Like clockwork, on day 0, your WBC will also hit 0 and you get your cells.  The infusion is uneventful, but momentous (take a picture of that bag of what looks like chicken broth ;-).  It takes about 20 minutes.

                        6) Within hours is the first IV bolus of IL-2.  Each subsequent dose will be every 8 hours, continuing for up to 15 doses, so figure 3-5 days of IL-2 dosing and another two days for recovery from IL-2.  From admission to discharge, the stay is about 2.5 weeks.

                        7) I saw a subcutaneous tumor in my right temple start to shrink before I was discharged, but everyone is different, and they don't always expect that.

                        8) First scans were 6 weeks after infusion day (so more like 5 weeks after discharge).

                        9) Even if they don't see results then, doesn't mean it hasn't worked, but they may do another apheresis to measure the WBC and TIL activity in the blood.  My chest catheter came out at this appointment, too.  They left it in just for the apheresis, even though apheresis can be done without the catheter.

                        10) Another set of scans 6 weeks later and from there settle on another 6 weeks or moving to a 12 week schedule.

                        I hope that helps Artie.  Like I said, I'm still praying for your current plan, but have you thought about where you would go for TIL?  Do you have a resectable tumor in mind that would be used for the harvest?  Food for thought…

                        Best, Joe

                        RJoeyB
                        Participant

                          Hi Artie,

                          Still praying for the PD-1 and radiation for you, of course, but to answer your question…  at NIH, the rough schedule was:

                          1) Intake visit.

                          2) Harvest surgery, about a week later.  You'll also have apheresis a.k.a. leukapheresis to extract white blood cells for measurement and use in growing the harvested cells.

                          3) Grow cells — probably closer to 4-5 weeks than 6, but of course this is variable.  Also note that cells don't always grow, I've heard a rough estimate (very rough) that they get a viable batch about 80% of the time.  But typically they know within 7-10 days if the batch will grow and grow at an acceptable rate.  I had some complications here, the first batch grew too slowly but then later on sped up and could have been used, and the ones from a second harvest grew in three weeks and were ready to go early.

                          4) Assuming a viable batch, figure on being back to the hospital 4-5 weeks after harvest (and again, MDA and Moffitt could be different) for prep, like placement of chest catheter, etc., then starting lymphoidepletion.  Typically that's 2 days of cyclophosphamide followed by 5 days of fludarabine (very precise schedule, every 21 hours).  Some trials have added total body irradiation (TBI) into their experimental arms, but not interfering with the lymphoidepletion schedule.  Most importantly here, before starting any lymphodepletion they have a formal certification process to ensure that the TIL cells are indeed ready (they don't want to lymphodeplete without a way to reconstitute!)

                          5) Like clockwork, on day 0, your WBC will also hit 0 and you get your cells.  The infusion is uneventful, but momentous (take a picture of that bag of what looks like chicken broth ;-).  It takes about 20 minutes.

                          6) Within hours is the first IV bolus of IL-2.  Each subsequent dose will be every 8 hours, continuing for up to 15 doses, so figure 3-5 days of IL-2 dosing and another two days for recovery from IL-2.  From admission to discharge, the stay is about 2.5 weeks.

                          7) I saw a subcutaneous tumor in my right temple start to shrink before I was discharged, but everyone is different, and they don't always expect that.

                          8) First scans were 6 weeks after infusion day (so more like 5 weeks after discharge).

                          9) Even if they don't see results then, doesn't mean it hasn't worked, but they may do another apheresis to measure the WBC and TIL activity in the blood.  My chest catheter came out at this appointment, too.  They left it in just for the apheresis, even though apheresis can be done without the catheter.

                          10) Another set of scans 6 weeks later and from there settle on another 6 weeks or moving to a 12 week schedule.

                          I hope that helps Artie.  Like I said, I'm still praying for your current plan, but have you thought about where you would go for TIL?  Do you have a resectable tumor in mind that would be used for the harvest?  Food for thought…

                          Best, Joe

                          Bubbles
                          Participant

                            Hey Artie,

                            Joe certainly has better answers for you than I do.  Just wishing you well and hoping that Plan B will not be needed, but I don't blame you for getting your thoughts together.  Here are a couple of posts from Alisa who recently went through the TIL process:

                            http://joshalisa.blogspot.com/2014/08/trial-recap.html

                            and on her first scans is responding well:

                            http://joshalisa.blogspot.com/2014/09/again.html

                            Yours, celeste

                              arthurjedi007
                              Participant

                                Thanks Celeste. Always good to hear of successes with this stuff.

                                Artie

                                arthurjedi007
                                Participant

                                  Thanks Celeste. Always good to hear of successes with this stuff.

                                  Artie

                                  arthurjedi007
                                  Participant

                                    Thanks Celeste. Always good to hear of successes with this stuff.

                                    Artie

                                  Bubbles
                                  Participant

                                    Hey Artie,

                                    Joe certainly has better answers for you than I do.  Just wishing you well and hoping that Plan B will not be needed, but I don't blame you for getting your thoughts together.  Here are a couple of posts from Alisa who recently went through the TIL process:

                                    http://joshalisa.blogspot.com/2014/08/trial-recap.html

                                    and on her first scans is responding well:

                                    http://joshalisa.blogspot.com/2014/09/again.html

                                    Yours, celeste

                                    Bubbles
                                    Participant

                                      Hey Artie,

                                      Joe certainly has better answers for you than I do.  Just wishing you well and hoping that Plan B will not be needed, but I don't blame you for getting your thoughts together.  Here are a couple of posts from Alisa who recently went through the TIL process:

                                      http://joshalisa.blogspot.com/2014/08/trial-recap.html

                                      and on her first scans is responding well:

                                      http://joshalisa.blogspot.com/2014/09/again.html

                                      Yours, celeste

                                      tlynnbeach5
                                      Participant

                                        Not sure but  I was sorry to hear of your side effects.  Have you heard of Doterra DDR?  It's a natural essential oil that has a 70% rate of shrinking tumors and clearing cancer.

                                        Also, Rick Simpson oil has a very high success rate for late stage cancer.  Unfortunately the govn't is not letting the word get out, cause they don't make as much money when the product works!  Rick Simpson has helped 5000 become free of late stage cancer, I recently learned.

                                        I have symptoms of a tumor that are no longer present b/c of Doterra!   But you have to drink a lot of water with it.

                                        Both of the above have no real side effects or are hard on the body b/c they are natural.

                                        Good luck:)

                                        tlynnbeach5
                                        Participant

                                          Not sure but  I was sorry to hear of your side effects.  Have you heard of Doterra DDR?  It's a natural essential oil that has a 70% rate of shrinking tumors and clearing cancer.

                                          Also, Rick Simpson oil has a very high success rate for late stage cancer.  Unfortunately the govn't is not letting the word get out, cause they don't make as much money when the product works!  Rick Simpson has helped 5000 become free of late stage cancer, I recently learned.

                                          I have symptoms of a tumor that are no longer present b/c of Doterra!   But you have to drink a lot of water with it.

                                          Both of the above have no real side effects or are hard on the body b/c they are natural.

                                          Good luck:)

                                            Janner
                                            Participant

                                              Doterra was just sanctioned by the FDA today for false claims of curing cancer and other ailments.  Actually, I think it was a rep from the MLM company who has actually been making those claims.  That you?

                                              Janner
                                              Participant

                                                Doterra was just sanctioned by the FDA today for false claims of curing cancer and other ailments.  Actually, I think it was a rep from the MLM company who has actually been making those claims.  That you?

                                                Janner
                                                Participant

                                                  Doterra was just sanctioned by the FDA today for false claims of curing cancer and other ailments.  Actually, I think it was a rep from the MLM company who has actually been making those claims.  That you?

                                                  arthurjedi007
                                                  Participant

                                                    Never heard of it. I expect there are lots of things in nature that can help us with this stupid disease. But I do like pd1 a lot. Radiation not so much but it kept the disease from paralyzing me last winter. Surgery I don't like at all but you gotta do what you gotta do. Other meds I don't like so much either although ipi was good. The taf/mek pills not so much but no where near as bad as zel was for me.

                                                    I'm suprised today that I can lift my left foot pretty good while sitting. The past 4 days I couldn't do it at all. So something must be going right so I'm glad for that.

                                                    Artie

                                                     

                                                    arthurjedi007
                                                    Participant

                                                      Never heard of it. I expect there are lots of things in nature that can help us with this stupid disease. But I do like pd1 a lot. Radiation not so much but it kept the disease from paralyzing me last winter. Surgery I don't like at all but you gotta do what you gotta do. Other meds I don't like so much either although ipi was good. The taf/mek pills not so much but no where near as bad as zel was for me.

                                                      I'm suprised today that I can lift my left foot pretty good while sitting. The past 4 days I couldn't do it at all. So something must be going right so I'm glad for that.

                                                      Artie

                                                       

                                                      arthurjedi007
                                                      Participant

                                                        Never heard of it. I expect there are lots of things in nature that can help us with this stupid disease. But I do like pd1 a lot. Radiation not so much but it kept the disease from paralyzing me last winter. Surgery I don't like at all but you gotta do what you gotta do. Other meds I don't like so much either although ipi was good. The taf/mek pills not so much but no where near as bad as zel was for me.

                                                        I'm suprised today that I can lift my left foot pretty good while sitting. The past 4 days I couldn't do it at all. So something must be going right so I'm glad for that.

                                                        Artie

                                                         

                                                      tlynnbeach5
                                                      Participant

                                                        Not sure but  I was sorry to hear of your side effects.  Have you heard of Doterra DDR?  It's a natural essential oil that has a 70% rate of shrinking tumors and clearing cancer.

                                                        Also, Rick Simpson oil has a very high success rate for late stage cancer.  Unfortunately the govn't is not letting the word get out, cause they don't make as much money when the product works!  Rick Simpson has helped 5000 become free of late stage cancer, I recently learned.

                                                        I have symptoms of a tumor that are no longer present b/c of Doterra!   But you have to drink a lot of water with it.

                                                        Both of the above have no real side effects or are hard on the body b/c they are natural.

                                                        Good luck:)

                                                        JerryfromFauq
                                                        Participant

                                                          I have a couple of NIH articles I'll try to post if the MRF will allow it.

                                                          http://www.cancer.gov/ncicancerbulletin/050112/page4

                                                          NCI Cancer Bulletin for May 1, 2012 – National Cancer Institute

                                                          This is part one. If it goes I will try part two of their articlesetin for May 1, 2012 – National Cancer Institute

                                                          JerryfromFauq
                                                          Participant

                                                            I have a couple of NIH articles I'll try to post if the MRF will allow it.

                                                            http://www.cancer.gov/ncicancerbulletin/050112/page4

                                                            NCI Cancer Bulletin for May 1, 2012 – National Cancer Institute

                                                            This is part one. If it goes I will try part two of their articlesetin for May 1, 2012 – National Cancer Institute

                                                            JerryfromFauq
                                                            Participant

                                                              I have a couple of NIH articles I'll try to post if the MRF will allow it.

                                                              http://www.cancer.gov/ncicancerbulletin/050112/page4

                                                              NCI Cancer Bulletin for May 1, 2012 – National Cancer Institute

                                                              This is part one. If it goes I will try part two of their articlesetin for May 1, 2012 – National Cancer Institute

                                                              kylez
                                                              Participant

                                                                Artie,

                                                                You had to pause on PD1 for something like a month, right? I hope your plan A shifts back in gear for you quickly again.  

                                                                There's a company backing TIL called Lion Biotechnologies I'd never heard of. They list several TIL trials at both NCI and Moffitt, http://lbio.com/clinical-development/. It seems they're the licensee of the NCI/NIH TIL research. For whatever that info is worth in terms of thinking about the treatment. They say they plan to open a large phase 3 trial for TIL in 2015. 

                                                                I hope that your foot improves back on the PD1 again. 

                                                                Kyle

                                                                kylez
                                                                Participant

                                                                  Artie,

                                                                  You had to pause on PD1 for something like a month, right? I hope your plan A shifts back in gear for you quickly again.  

                                                                  There's a company backing TIL called Lion Biotechnologies I'd never heard of. They list several TIL trials at both NCI and Moffitt, http://lbio.com/clinical-development/. It seems they're the licensee of the NCI/NIH TIL research. For whatever that info is worth in terms of thinking about the treatment. They say they plan to open a large phase 3 trial for TIL in 2015. 

                                                                  I hope that your foot improves back on the PD1 again. 

                                                                  Kyle

                                                                  kylez
                                                                  Participant

                                                                    Artie,

                                                                    You had to pause on PD1 for something like a month, right? I hope your plan A shifts back in gear for you quickly again.  

                                                                    There's a company backing TIL called Lion Biotechnologies I'd never heard of. They list several TIL trials at both NCI and Moffitt, http://lbio.com/clinical-development/. It seems they're the licensee of the NCI/NIH TIL research. For whatever that info is worth in terms of thinking about the treatment. They say they plan to open a large phase 3 trial for TIL in 2015. 

                                                                    I hope that your foot improves back on the PD1 again. 

                                                                    Kyle

                                                                      arthurjedi007
                                                                      Participant

                                                                        Nope I haven't had to miss any pd1 yet. I kind of juggled docs a little and post poned scans. Granted I couldn't have finished radiation last Monday and supposedly been at my long distance doc Tuesday for scans. With my spine issues I do not fly and I was wiped out from the radiation anyway. So scans are in a couple weeks and for the first time I'm actually kind of looking forward to them.

                                                                        Also there seems to be a difference of opinion of when people should stay on pd1. My long distance doc says you can't continue if anything is growing. That kind of makes sense and his alternative is those 2 chemo meds I posted about not long ago. Then my local doc is saying I have to stay on pd1 because there is nothing else. I like pd1 though and am hoping with the radiation my next scans will be really awesome. If there is anything growing I expect it to be the 2 tumors that were in the report but the doc didn't talk about them so they didn't get radiated although maybe the pd1 has got them in line too. We shall see. If not I would think it reasonable to radiate them too and continue on pd1 for at least 1 more scan cycle. But that's just me speculating and thoughts on what may not even be an issue.

                                                                        Lion Biotechnologies did post something on this forum last winter sometime. Good to hear they are helping with TIL.

                                                                        Artie

                                                                        arthurjedi007
                                                                        Participant

                                                                          Nope I haven't had to miss any pd1 yet. I kind of juggled docs a little and post poned scans. Granted I couldn't have finished radiation last Monday and supposedly been at my long distance doc Tuesday for scans. With my spine issues I do not fly and I was wiped out from the radiation anyway. So scans are in a couple weeks and for the first time I'm actually kind of looking forward to them.

                                                                          Also there seems to be a difference of opinion of when people should stay on pd1. My long distance doc says you can't continue if anything is growing. That kind of makes sense and his alternative is those 2 chemo meds I posted about not long ago. Then my local doc is saying I have to stay on pd1 because there is nothing else. I like pd1 though and am hoping with the radiation my next scans will be really awesome. If there is anything growing I expect it to be the 2 tumors that were in the report but the doc didn't talk about them so they didn't get radiated although maybe the pd1 has got them in line too. We shall see. If not I would think it reasonable to radiate them too and continue on pd1 for at least 1 more scan cycle. But that's just me speculating and thoughts on what may not even be an issue.

                                                                          Lion Biotechnologies did post something on this forum last winter sometime. Good to hear they are helping with TIL.

                                                                          Artie

                                                                          arthurjedi007
                                                                          Participant

                                                                            Nope I haven't had to miss any pd1 yet. I kind of juggled docs a little and post poned scans. Granted I couldn't have finished radiation last Monday and supposedly been at my long distance doc Tuesday for scans. With my spine issues I do not fly and I was wiped out from the radiation anyway. So scans are in a couple weeks and for the first time I'm actually kind of looking forward to them.

                                                                            Also there seems to be a difference of opinion of when people should stay on pd1. My long distance doc says you can't continue if anything is growing. That kind of makes sense and his alternative is those 2 chemo meds I posted about not long ago. Then my local doc is saying I have to stay on pd1 because there is nothing else. I like pd1 though and am hoping with the radiation my next scans will be really awesome. If there is anything growing I expect it to be the 2 tumors that were in the report but the doc didn't talk about them so they didn't get radiated although maybe the pd1 has got them in line too. We shall see. If not I would think it reasonable to radiate them too and continue on pd1 for at least 1 more scan cycle. But that's just me speculating and thoughts on what may not even be an issue.

                                                                            Lion Biotechnologies did post something on this forum last winter sometime. Good to hear they are helping with TIL.

                                                                            Artie

                                                                          eturner
                                                                          Participant

                                                                            Artie,

                                                                            My husband has a tumor (on of many) on L5 and it involves the S1 nerve root this leads to pain in the lower leg and top of foot.. He had radiation on the area two weeks ago and is still having pain in the foot.. I think once a tumor attacks that nerve there will be lasting effects even after the radiation. Please know I am thinking of you and praying for the best.

                                                                             

                                                                            Emily 

                                                                            eturner
                                                                            Participant

                                                                              Artie,

                                                                              My husband has a tumor (on of many) on L5 and it involves the S1 nerve root this leads to pain in the lower leg and top of foot.. He had radiation on the area two weeks ago and is still having pain in the foot.. I think once a tumor attacks that nerve there will be lasting effects even after the radiation. Please know I am thinking of you and praying for the best.

                                                                               

                                                                              Emily 

                                                                                Phil S
                                                                                Participant

                                                                                  Artie,  My husband, Phil had TIL in Houston in May 2012, and was scanned 6 weeks after T cell infusion, then again 6 weeks later.  Both initial scans showed tumor shrinkage.  He is now on scans every 4 to 5 months, and his tumors have been stable for the past 2 years.  He is doing great!!  Wishing you all the best,  Valerie 

                                                                                  Phil S
                                                                                  Participant

                                                                                    Artie,  My husband, Phil had TIL in Houston in May 2012, and was scanned 6 weeks after T cell infusion, then again 6 weeks later.  Both initial scans showed tumor shrinkage.  He is now on scans every 4 to 5 months, and his tumors have been stable for the past 2 years.  He is doing great!!  Wishing you all the best,  Valerie 

                                                                                    Phil S
                                                                                    Participant

                                                                                      Artie,  My husband, Phil had TIL in Houston in May 2012, and was scanned 6 weeks after T cell infusion, then again 6 weeks later.  Both initial scans showed tumor shrinkage.  He is now on scans every 4 to 5 months, and his tumors have been stable for the past 2 years.  He is doing great!!  Wishing you all the best,  Valerie 

                                                                                      arthurjedi007
                                                                                      Participant

                                                                                        Good to hear of your husband's success with TIL and that it showed shrinkage so soon. Thanks.

                                                                                        Artie

                                                                                        arthurjedi007
                                                                                        Participant

                                                                                          Good to hear of your husband's success with TIL and that it showed shrinkage so soon. Thanks.

                                                                                          Artie

                                                                                          arthurjedi007
                                                                                          Participant

                                                                                            Good to hear of your husband's success with TIL and that it showed shrinkage so soon. Thanks.

                                                                                            Artie

                                                                                            arthurjedi007
                                                                                            Participant

                                                                                              Thank you. I'm very suprised today I can lift my left foot pretty good while sitting. For the past 4 days I couldn't lift it at all while sitting. So I dunno what is going on. I do know the radiation I got was close to the CNS of the head and spine. So maybe some affects from that and I just have to let my body heal and hope for the best. Last week for 3 days I couldn't turn my head to the left or right then Saturday it cleared up fine and is still fine. So I dunno. Strange stuff.

                                                                                              I hope your husband gets better.

                                                                                              Artie

                                                                                               

                                                                                              arthurjedi007
                                                                                              Participant

                                                                                                Thank you. I'm very suprised today I can lift my left foot pretty good while sitting. For the past 4 days I couldn't lift it at all while sitting. So I dunno what is going on. I do know the radiation I got was close to the CNS of the head and spine. So maybe some affects from that and I just have to let my body heal and hope for the best. Last week for 3 days I couldn't turn my head to the left or right then Saturday it cleared up fine and is still fine. So I dunno. Strange stuff.

                                                                                                I hope your husband gets better.

                                                                                                Artie

                                                                                                 

                                                                                                arthurjedi007
                                                                                                Participant

                                                                                                  Thank you. I'm very suprised today I can lift my left foot pretty good while sitting. For the past 4 days I couldn't lift it at all while sitting. So I dunno what is going on. I do know the radiation I got was close to the CNS of the head and spine. So maybe some affects from that and I just have to let my body heal and hope for the best. Last week for 3 days I couldn't turn my head to the left or right then Saturday it cleared up fine and is still fine. So I dunno. Strange stuff.

                                                                                                  I hope your husband gets better.

                                                                                                  Artie

                                                                                                   

                                                                                                eturner
                                                                                                Participant

                                                                                                  Artie,

                                                                                                  My husband has a tumor (on of many) on L5 and it involves the S1 nerve root this leads to pain in the lower leg and top of foot.. He had radiation on the area two weeks ago and is still having pain in the foot.. I think once a tumor attacks that nerve there will be lasting effects even after the radiation. Please know I am thinking of you and praying for the best.

                                                                                                   

                                                                                                  Emily 

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