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What to Do

Forums General Melanoma Community What to Do

  • Post
    JoshF
    Participant

      So brain MRI was stable. That means TIL would be a go. I'm having 2nd thoughts. Is TIL my best option at beating this or getting into trial like Paul is looking at. I guess I'd like to ask Paul if he'd do TIL again. How tough was it? It's tough decision because it's a long time away from my kids…. What are response rates…is the juice worth the squeeze? I'm really torn…somebody give me some guidance.

      Josh

    Viewing 41 reply threads
    • Replies
        Bubbles
        Participant

          Do you have a good number of cells? Paul's difficulty (though I certainly don't want speak for him) was certainly compounded by fewer than was preferred.  If you do have a good number of bad ass melanoma fighting cells ready to infused…this is a window…go for it!!!  Have they offered you any other alternatives?  Love you, Joshie!!  Hang tough.  c

          Bubbles
          Participant

            Do you have a good number of cells? Paul's difficulty (though I certainly don't want speak for him) was certainly compounded by fewer than was preferred.  If you do have a good number of bad ass melanoma fighting cells ready to infused…this is a window…go for it!!!  Have they offered you any other alternatives?  Love you, Joshie!!  Hang tough.  c

              JoshF
              Participant

                I have about 100 million frozen. What they will expand that to is unknown at this point. I'm nervous about that.

                Bubbles
                Participant

                  When will the final number be known?  How long before you would be actually be getting treatment?

                  JoshF
                  Participant

                    Actual infusion on Feb 7th. I'm not sure when final count would be done. My guess is by 31st…once they start lymphodepletion

                    JoshF
                    Participant

                      Actual infusion on Feb 7th. I'm not sure when final count would be done. My guess is by 31st…once they start lymphodepletion

                      Bubbles
                      Participant

                        Do you know why it would take 3 weeks?  Does it take that long to grow cells?  If I were in your shoes….I would say yes to the dress…aka…the cells.  BUT!!!!  I would talk to my local doc.  What is their best advice apart from the current treatment?  I would look at all the various options we have all put forward.  Of those….what sounds possible/interesting to you?  Is there something?  I'll research anything you say.  THEN….call that contact.  What do they have to say?  What is their timeframe?  This is not the time to play nice….one by one.  This is the time to go nuts!  Let's take this moment and make hay with any option we can.  Who has the best deal?  The best odds?   The best timeframe?

                        Bubbles
                        Participant

                          Do you know why it would take 3 weeks?  Does it take that long to grow cells?  If I were in your shoes….I would say yes to the dress…aka…the cells.  BUT!!!!  I would talk to my local doc.  What is their best advice apart from the current treatment?  I would look at all the various options we have all put forward.  Of those….what sounds possible/interesting to you?  Is there something?  I'll research anything you say.  THEN….call that contact.  What do they have to say?  What is their timeframe?  This is not the time to play nice….one by one.  This is the time to go nuts!  Let's take this moment and make hay with any option we can.  Who has the best deal?  The best odds?   The best timeframe?

                          Bubbles
                          Participant

                            Do you know why it would take 3 weeks?  Does it take that long to grow cells?  If I were in your shoes….I would say yes to the dress…aka…the cells.  BUT!!!!  I would talk to my local doc.  What is their best advice apart from the current treatment?  I would look at all the various options we have all put forward.  Of those….what sounds possible/interesting to you?  Is there something?  I'll research anything you say.  THEN….call that contact.  What do they have to say?  What is their timeframe?  This is not the time to play nice….one by one.  This is the time to go nuts!  Let's take this moment and make hay with any option we can.  Who has the best deal?  The best odds?   The best timeframe?

                            JoshF
                            Participant

                              Actual infusion on Feb 7th. I'm not sure when final count would be done. My guess is by 31st…once they start lymphodepletion

                              Bubbles
                              Participant

                                When will the final number be known?  How long before you would be actually be getting treatment?

                                Bubbles
                                Participant

                                  When will the final number be known?  How long before you would be actually be getting treatment?

                                  JoshF
                                  Participant

                                    I have about 100 million frozen. What they will expand that to is unknown at this point. I'm nervous about that.

                                    JoshF
                                    Participant

                                      I have about 100 million frozen. What they will expand that to is unknown at this point. I'm nervous about that.

                                    Bubbles
                                    Participant

                                      Do you have a good number of cells? Paul's difficulty (though I certainly don't want speak for him) was certainly compounded by fewer than was preferred.  If you do have a good number of bad ass melanoma fighting cells ready to infused…this is a window…go for it!!!  Have they offered you any other alternatives?  Love you, Joshie!!  Hang tough.  c

                                      snow white
                                      Participant

                                        Glad to hear that the brain is stable, that is great!!  I am anxious to hear what Paul has to say.  I had a chance to speak to him about it yesterday, it sounds like his experience was intense, especially given he wasn't able to receive the second and third bag.  But, I know everyone is diff rent.  Is there any chance that you could get it touch with Hamid's office for at least some type of phone consultation?  Just throwing out ideas, not that he is the "save all" for everyone, just a good source of info. Thinking and praying for some kind of answer for you Josh.  Thanks for staying in touch on the board, it means alot 🙂

                                        xo Jen

                                        snow white
                                        Participant

                                          Glad to hear that the brain is stable, that is great!!  I am anxious to hear what Paul has to say.  I had a chance to speak to him about it yesterday, it sounds like his experience was intense, especially given he wasn't able to receive the second and third bag.  But, I know everyone is diff rent.  Is there any chance that you could get it touch with Hamid's office for at least some type of phone consultation?  Just throwing out ideas, not that he is the "save all" for everyone, just a good source of info. Thinking and praying for some kind of answer for you Josh.  Thanks for staying in touch on the board, it means alot 🙂

                                          xo Jen

                                          snow white
                                          Participant

                                            Glad to hear that the brain is stable, that is great!!  I am anxious to hear what Paul has to say.  I had a chance to speak to him about it yesterday, it sounds like his experience was intense, especially given he wasn't able to receive the second and third bag.  But, I know everyone is diff rent.  Is there any chance that you could get it touch with Hamid's office for at least some type of phone consultation?  Just throwing out ideas, not that he is the "save all" for everyone, just a good source of info. Thinking and praying for some kind of answer for you Josh.  Thanks for staying in touch on the board, it means alot 🙂

                                            xo Jen

                                            tschmith
                                            Participant

                                              Josh, I'm kind of hesitant to tell my story because it's kind unique, but first I want you to know that you are in my prayers.  So….I was kind of in your boat but going in the opposite direction.  I had melanoma here there and everywhere.  I was going to try IL2 but an opportunity arose at NIH. I didn't have a met that was big enough for TIL so they did a core biopsy from a mass surrounding my ribs.  It failed to grow enough cells so they enrolled me in a trial called MAGE TCR.  The procedure is much like TIL however they removed white blood cells during apherisis and re-engineered them with a retro virus and IL2.  They used chemo to take me to neutropenia and then gave me back my cells with a boost of IL2.  I was able to receive 6 bags (or 8…honestly, I don't remember).  A fever developed/infection but they got it under control.  The cancer slowed for a bit (not even two months) but then some progression. I was crushed. They didn't consider it a success, but on the other hand I was only the third person to do the trial. My doctor, Evan Lipson (Johns Hopkins), said we need to get you into Merck's extended access program for Pembro.  Hopkins didn't have it but Georgetown did with Dr. Michael Atkins. It worked. They considered it a combination since the treatments were so close together.  It's not your typical combination but a combination just the same. I've been off treatment since June of 2015 and am still NED. I don't know if this helps, but I felt it would be good to share it with you.  

                                              Hope and Faith

                                              Terrie

                                              tschmith
                                              Participant

                                                Josh, I'm kind of hesitant to tell my story because it's kind unique, but first I want you to know that you are in my prayers.  So….I was kind of in your boat but going in the opposite direction.  I had melanoma here there and everywhere.  I was going to try IL2 but an opportunity arose at NIH. I didn't have a met that was big enough for TIL so they did a core biopsy from a mass surrounding my ribs.  It failed to grow enough cells so they enrolled me in a trial called MAGE TCR.  The procedure is much like TIL however they removed white blood cells during apherisis and re-engineered them with a retro virus and IL2.  They used chemo to take me to neutropenia and then gave me back my cells with a boost of IL2.  I was able to receive 6 bags (or 8…honestly, I don't remember).  A fever developed/infection but they got it under control.  The cancer slowed for a bit (not even two months) but then some progression. I was crushed. They didn't consider it a success, but on the other hand I was only the third person to do the trial. My doctor, Evan Lipson (Johns Hopkins), said we need to get you into Merck's extended access program for Pembro.  Hopkins didn't have it but Georgetown did with Dr. Michael Atkins. It worked. They considered it a combination since the treatments were so close together.  It's not your typical combination but a combination just the same. I've been off treatment since June of 2015 and am still NED. I don't know if this helps, but I felt it would be good to share it with you.  

                                                Hope and Faith

                                                Terrie

                                                tschmith
                                                Participant

                                                  Josh, I'm kind of hesitant to tell my story because it's kind unique, but first I want you to know that you are in my prayers.  So….I was kind of in your boat but going in the opposite direction.  I had melanoma here there and everywhere.  I was going to try IL2 but an opportunity arose at NIH. I didn't have a met that was big enough for TIL so they did a core biopsy from a mass surrounding my ribs.  It failed to grow enough cells so they enrolled me in a trial called MAGE TCR.  The procedure is much like TIL however they removed white blood cells during apherisis and re-engineered them with a retro virus and IL2.  They used chemo to take me to neutropenia and then gave me back my cells with a boost of IL2.  I was able to receive 6 bags (or 8…honestly, I don't remember).  A fever developed/infection but they got it under control.  The cancer slowed for a bit (not even two months) but then some progression. I was crushed. They didn't consider it a success, but on the other hand I was only the third person to do the trial. My doctor, Evan Lipson (Johns Hopkins), said we need to get you into Merck's extended access program for Pembro.  Hopkins didn't have it but Georgetown did with Dr. Michael Atkins. It worked. They considered it a combination since the treatments were so close together.  It's not your typical combination but a combination just the same. I've been off treatment since June of 2015 and am still NED. I don't know if this helps, but I felt it would be good to share it with you.  

                                                  Hope and Faith

                                                  Terrie

                                                  _Paul_
                                                  Participant

                                                    Josh,

                                                    My email is [email protected] and my phone number is 425-590-7393. It would be great to talk to you. Seriously.

                                                    – Paul

                                                    _Paul_
                                                    Participant

                                                      Josh,

                                                      My email is [email protected] and my phone number is 425-590-7393. It would be great to talk to you. Seriously.

                                                      – Paul

                                                      _Paul_
                                                      Participant

                                                        Josh,

                                                        My email is [email protected] and my phone number is 425-590-7393. It would be great to talk to you. Seriously.

                                                        – Paul

                                                        ed williams
                                                        Participant

                                                          Hi Josh, the best link to data that I have on T-cell adoptive therapy is from MD Anderson and Dr. Patrick Hwu who brought the program to MD Anderson. The video is from 2013 sorry that I have nothing more current from him. He is speaking at the Angeles Clinic. Best Wishes!!!Ed  https://www.youtube.com/watch?v=yGzJzzGj5Jw

                                                          ed williams
                                                          Participant

                                                            Hi Josh, the best link to data that I have on T-cell adoptive therapy is from MD Anderson and Dr. Patrick Hwu who brought the program to MD Anderson. The video is from 2013 sorry that I have nothing more current from him. He is speaking at the Angeles Clinic. Best Wishes!!!Ed  https://www.youtube.com/watch?v=yGzJzzGj5Jw

                                                            ed williams
                                                            Participant

                                                              Hi Josh, the best link to data that I have on T-cell adoptive therapy is from MD Anderson and Dr. Patrick Hwu who brought the program to MD Anderson. The video is from 2013 sorry that I have nothing more current from him. He is speaking at the Angeles Clinic. Best Wishes!!!Ed  https://www.youtube.com/watch?v=yGzJzzGj5Jw

                                                              momof4boys
                                                              Participant
                                                                Josh is there any way you could at least talk to Hamid office to see if there is anything they could do for you and then choose from the two? Or you could try the Til and keep Hamid in your back pocket if it doesn’t work. Tough decisions and I’m sure you’ve already thought about these. Good to hear from you. Best I can say is what does your gut tell you?
                                                                momof4boys
                                                                Participant
                                                                  Josh is there any way you could at least talk to Hamid office to see if there is anything they could do for you and then choose from the two? Or you could try the Til and keep Hamid in your back pocket if it doesn’t work. Tough decisions and I’m sure you’ve already thought about these. Good to hear from you. Best I can say is what does your gut tell you?
                                                                    jpg
                                                                    Participant

                                                                      I guess keep in mind that TIL doesn't have a trial to prove it is successful, we have stories of the good and the bad.  Time and good quality life outweigh all.

                                                                      jpg
                                                                      Participant

                                                                        I guess keep in mind that TIL doesn't have a trial to prove it is successful, we have stories of the good and the bad.  Time and good quality life outweigh all.

                                                                        jpg
                                                                        Participant

                                                                          I guess keep in mind that TIL doesn't have a trial to prove it is successful, we have stories of the good and the bad.  Time and good quality life outweigh all.

                                                                        momof4boys
                                                                        Participant
                                                                          Josh is there any way you could at least talk to Hamid office to see if there is anything they could do for you and then choose from the two? Or you could try the Til and keep Hamid in your back pocket if it doesn’t work. Tough decisions and I’m sure you’ve already thought about these. Good to hear from you. Best I can say is what does your gut tell you?
                                                                          maperny
                                                                          Participant

                                                                            Josh,

                                                                            The final number of cells were known on the day for us.  It was only 4 billion, an extremely small number but we went ahead anyway, it was the lowest they had ever actually gone ahead with.  The trial had two arms with the IL-2 both low dose and high dose.  juan got low dose which was a daily injection over two weeks.  He had done high-dose before so we knew what that was like.  i will say that our experience at MDA when Juan did high-dose was that they were all over it and the symptoms, no letting him leave hospital until fully recovered etc.

                                                                            we wanted to do TIL because the success rate is about 50% I think for those who are well enough to do it and who harvest cells.  There are specific examples of people who have become NED, I think even on this board. So it is actually a treatment that has been proven to work.   It cannot be done by everyone of course.  Additionally, this particular protocol combined it with Keytruda so three weeks after T-cell infusion was first Keytruda infusion.  I think that is key as well.

                                                                            obviously it did not work for Juan, but I think if they are already telling you they have about 100billion cells at this stage then that sounds fantastic to me.  I would see about getting the immunitherapy immediately afterwards or whether you could do something with Dr Hamid after you have recovered.

                                                                            the one final thought I have is whether you should see about Y-90 or something to shrink the liver tumours a bit first.  It may not be an option per MDA, it may not be worth it as you have mets in a lot of other places and you would not want to delay TIL for that reason, plus the liver treatment may weaken you so that TIL would then be difficult afterwards.  sorry if I am further confusing things, just wanted you to have all aspects to think through and ask about.

                                                                            if you have time, it is a quick read.   Look up Changing the Game Plan – the story of Trey Rood.  

                                                                            Bottom-line, not everyone gets the chance to do TIL, they only want to put the people through it who have a good chance,  That is my honest opinion.  Juan even asked the other day if he could try again but obviously not an option for us.

                                                                            Good luck

                                                                            Maria

                                                                             

                                                                            maperny
                                                                            Participant

                                                                              Josh,

                                                                              The final number of cells were known on the day for us.  It was only 4 billion, an extremely small number but we went ahead anyway, it was the lowest they had ever actually gone ahead with.  The trial had two arms with the IL-2 both low dose and high dose.  juan got low dose which was a daily injection over two weeks.  He had done high-dose before so we knew what that was like.  i will say that our experience at MDA when Juan did high-dose was that they were all over it and the symptoms, no letting him leave hospital until fully recovered etc.

                                                                              we wanted to do TIL because the success rate is about 50% I think for those who are well enough to do it and who harvest cells.  There are specific examples of people who have become NED, I think even on this board. So it is actually a treatment that has been proven to work.   It cannot be done by everyone of course.  Additionally, this particular protocol combined it with Keytruda so three weeks after T-cell infusion was first Keytruda infusion.  I think that is key as well.

                                                                              obviously it did not work for Juan, but I think if they are already telling you they have about 100billion cells at this stage then that sounds fantastic to me.  I would see about getting the immunitherapy immediately afterwards or whether you could do something with Dr Hamid after you have recovered.

                                                                              the one final thought I have is whether you should see about Y-90 or something to shrink the liver tumours a bit first.  It may not be an option per MDA, it may not be worth it as you have mets in a lot of other places and you would not want to delay TIL for that reason, plus the liver treatment may weaken you so that TIL would then be difficult afterwards.  sorry if I am further confusing things, just wanted you to have all aspects to think through and ask about.

                                                                              if you have time, it is a quick read.   Look up Changing the Game Plan – the story of Trey Rood.  

                                                                              Bottom-line, not everyone gets the chance to do TIL, they only want to put the people through it who have a good chance,  That is my honest opinion.  Juan even asked the other day if he could try again but obviously not an option for us.

                                                                              Good luck

                                                                              Maria

                                                                               

                                                                              maperny
                                                                              Participant

                                                                                Josh,

                                                                                The final number of cells were known on the day for us.  It was only 4 billion, an extremely small number but we went ahead anyway, it was the lowest they had ever actually gone ahead with.  The trial had two arms with the IL-2 both low dose and high dose.  juan got low dose which was a daily injection over two weeks.  He had done high-dose before so we knew what that was like.  i will say that our experience at MDA when Juan did high-dose was that they were all over it and the symptoms, no letting him leave hospital until fully recovered etc.

                                                                                we wanted to do TIL because the success rate is about 50% I think for those who are well enough to do it and who harvest cells.  There are specific examples of people who have become NED, I think even on this board. So it is actually a treatment that has been proven to work.   It cannot be done by everyone of course.  Additionally, this particular protocol combined it with Keytruda so three weeks after T-cell infusion was first Keytruda infusion.  I think that is key as well.

                                                                                obviously it did not work for Juan, but I think if they are already telling you they have about 100billion cells at this stage then that sounds fantastic to me.  I would see about getting the immunitherapy immediately afterwards or whether you could do something with Dr Hamid after you have recovered.

                                                                                the one final thought I have is whether you should see about Y-90 or something to shrink the liver tumours a bit first.  It may not be an option per MDA, it may not be worth it as you have mets in a lot of other places and you would not want to delay TIL for that reason, plus the liver treatment may weaken you so that TIL would then be difficult afterwards.  sorry if I am further confusing things, just wanted you to have all aspects to think through and ask about.

                                                                                if you have time, it is a quick read.   Look up Changing the Game Plan – the story of Trey Rood.  

                                                                                Bottom-line, not everyone gets the chance to do TIL, they only want to put the people through it who have a good chance,  That is my honest opinion.  Juan even asked the other day if he could try again but obviously not an option for us.

                                                                                Good luck

                                                                                Maria

                                                                                 

                                                                                debwray
                                                                                Participant

                                                                                  Hi Josh,

                                                                                  All I can add to the info pot is that my specialist hospital registered to start TIL trials in the UK some time ago but looks like they have not started recruiting . Could be due to cash/ other therapies or wanting to see more results from the states. This article reviews http://www.touchoncology.com/articles/cancer-immunotherapy-interleukin-2-current-status-and-future-developments-0/page/3/0 and some of the references may give you outcome stats to help weigh things up. The other person you might consider talking to is Catherine Poole from Melanoma Foundation International. I gained the impression she has followed a number of patients through TIL trials- and may have insights that are helpful for you.

                                                                                  [email protected]

                                                                                  http://melanomainternational.org/2015/05/til-therapy-for-melanoma-magic-bullet-or/#.WH9_ZhuLTIU

                                                                                  It really stinks having to scramble at difficult and stressful times to find the info needed to make such important choices. Sorry, I have no answers for you but hope you and the family can gather enough information to be comfortable in the choices you make going forward. Best of luck Josh- we are all routing for you…

                                                                                  Deb PS   Hugs

                                                                                  debwray
                                                                                  Participant

                                                                                    Hi Josh,

                                                                                    All I can add to the info pot is that my specialist hospital registered to start TIL trials in the UK some time ago but looks like they have not started recruiting . Could be due to cash/ other therapies or wanting to see more results from the states. This article reviews http://www.touchoncology.com/articles/cancer-immunotherapy-interleukin-2-current-status-and-future-developments-0/page/3/0 and some of the references may give you outcome stats to help weigh things up. The other person you might consider talking to is Catherine Poole from Melanoma Foundation International. I gained the impression she has followed a number of patients through TIL trials- and may have insights that are helpful for you.

                                                                                    [email protected]

                                                                                    http://melanomainternational.org/2015/05/til-therapy-for-melanoma-magic-bullet-or/#.WH9_ZhuLTIU

                                                                                    It really stinks having to scramble at difficult and stressful times to find the info needed to make such important choices. Sorry, I have no answers for you but hope you and the family can gather enough information to be comfortable in the choices you make going forward. Best of luck Josh- we are all routing for you…

                                                                                    Deb PS   Hugs

                                                                                    debwray
                                                                                    Participant

                                                                                      Hi Josh,

                                                                                      All I can add to the info pot is that my specialist hospital registered to start TIL trials in the UK some time ago but looks like they have not started recruiting . Could be due to cash/ other therapies or wanting to see more results from the states. This article reviews http://www.touchoncology.com/articles/cancer-immunotherapy-interleukin-2-current-status-and-future-developments-0/page/3/0 and some of the references may give you outcome stats to help weigh things up. The other person you might consider talking to is Catherine Poole from Melanoma Foundation International. I gained the impression she has followed a number of patients through TIL trials- and may have insights that are helpful for you.

                                                                                      [email protected]

                                                                                      http://melanomainternational.org/2015/05/til-therapy-for-melanoma-magic-bullet-or/#.WH9_ZhuLTIU

                                                                                      It really stinks having to scramble at difficult and stressful times to find the info needed to make such important choices. Sorry, I have no answers for you but hope you and the family can gather enough information to be comfortable in the choices you make going forward. Best of luck Josh- we are all routing for you…

                                                                                      Deb PS   Hugs

                                                                                      maperny
                                                                                      Participant

                                                                                        oh and also.  Awesome news about the brain met!!

                                                                                        maperny
                                                                                        Participant

                                                                                          oh and also.  Awesome news about the brain met!!

                                                                                          maperny
                                                                                          Participant

                                                                                            oh and also.  Awesome news about the brain met!!

                                                                                            momof4boys
                                                                                            Participant
                                                                                              Josh, have you searched Til here on the forum? There are some good stories and info on there. The post I was just reading was from a few years back and I don’t know how they are doing now but read it, people that have been through it are the best to look to.
                                                                                              momof4boys
                                                                                              Participant
                                                                                                Josh, have you searched Til here on the forum? There are some good stories and info on there. The post I was just reading was from a few years back and I don’t know how they are doing now but read it, people that have been through it are the best to look to.
                                                                                                momof4boys
                                                                                                Participant
                                                                                                  Josh, have you searched Til here on the forum? There are some good stories and info on there. The post I was just reading was from a few years back and I don’t know how they are doing now but read it, people that have been through it are the best to look to.
                                                                                                  tschmith
                                                                                                  Participant

                                                                                                    Josh, one more thing about my trial at NIH.  I was on schedule to do Interleukin 2 but my doctors felt that I should try TIL first (ended up a gene transfer type of deal) in the event that some side effect of IL2 would prohibit me from at least attempting TIL or a TIL like therapy.  We were weighing the success rates.  

                                                                                                    Praying for you, Josh.

                                                                                                    Terrie

                                                                                                    tschmith
                                                                                                    Participant

                                                                                                      Josh, one more thing about my trial at NIH.  I was on schedule to do Interleukin 2 but my doctors felt that I should try TIL first (ended up a gene transfer type of deal) in the event that some side effect of IL2 would prohibit me from at least attempting TIL or a TIL like therapy.  We were weighing the success rates.  

                                                                                                      Praying for you, Josh.

                                                                                                      Terrie

                                                                                                      tschmith
                                                                                                      Participant

                                                                                                        Josh, one more thing about my trial at NIH.  I was on schedule to do Interleukin 2 but my doctors felt that I should try TIL first (ended up a gene transfer type of deal) in the event that some side effect of IL2 would prohibit me from at least attempting TIL or a TIL like therapy.  We were weighing the success rates.  

                                                                                                        Praying for you, Josh.

                                                                                                        Terrie

                                                                                                        BrianP
                                                                                                        Participant

                                                                                                          Josh,

                                                                                                          Vruti told me on one of my trips to MDA that by her estimates they are seeing about a 40% response rate for untreated patients and a 30% response rate for pretreated patients with their TIL at MDA. 

                                                                                                          Brian

                                                                                                          BrianP
                                                                                                          Participant

                                                                                                            Josh,

                                                                                                            Vruti told me on one of my trips to MDA that by her estimates they are seeing about a 40% response rate for untreated patients and a 30% response rate for pretreated patients with their TIL at MDA. 

                                                                                                            Brian

                                                                                                            BrianP
                                                                                                            Participant

                                                                                                              Josh,

                                                                                                              Vruti told me on one of my trips to MDA that by her estimates they are seeing about a 40% response rate for untreated patients and a 30% response rate for pretreated patients with their TIL at MDA. 

                                                                                                              Brian

                                                                                                                JoshF
                                                                                                                Participant

                                                                                                                  That's interesting because if you watch the link Ed sent, Dr Hwu's speech contradicts this. Just goes to show the varying opinions out there. 30% response rate for treatment of that magnitude…not sure I'd go that route.

                                                                                                                  How you doing on the ACT trial? I was really hoping that was my magic bullett….

                                                                                                                  JoshF
                                                                                                                  Participant

                                                                                                                    That's interesting because if you watch the link Ed sent, Dr Hwu's speech contradicts this. Just goes to show the varying opinions out there. 30% response rate for treatment of that magnitude…not sure I'd go that route.

                                                                                                                    How you doing on the ACT trial? I was really hoping that was my magic bullett….

                                                                                                                    JoshF
                                                                                                                    Participant

                                                                                                                      That's interesting because if you watch the link Ed sent, Dr Hwu's speech contradicts this. Just goes to show the varying opinions out there. 30% response rate for treatment of that magnitude…not sure I'd go that route.

                                                                                                                      How you doing on the ACT trial? I was really hoping that was my magic bullett….

                                                                                                                      BrianP
                                                                                                                      Participant

                                                                                                                        I haven't watched Ed's link so I'll go back and take a look at that.  Not sure how scientific Vruti's 40/30 was but that's what she shared with me.

                                                                                                                        I go back next week for the 3rd Ipi and 1st scan since startting.  Feeling good.  Only side effect so far was a pretty good rash for about 10 days after the initial infusion.  Since then nothing.  Still keeping you in my daily prayers.  Hang tough.

                                                                                                                        BrianP
                                                                                                                        Participant

                                                                                                                          I haven't watched Ed's link so I'll go back and take a look at that.  Not sure how scientific Vruti's 40/30 was but that's what she shared with me.

                                                                                                                          I go back next week for the 3rd Ipi and 1st scan since startting.  Feeling good.  Only side effect so far was a pretty good rash for about 10 days after the initial infusion.  Since then nothing.  Still keeping you in my daily prayers.  Hang tough.

                                                                                                                          ed williams
                                                                                                                          Participant

                                                                                                                            Hi Brian and Josh, I have some more for you if you are up to it. This one features Dr. Steven Rosenberg of the NIH who I believe trained Dr. Hwu before he went to MD Anderson. If you go to the 1.14 hr mark of the documentary it starts to talk about Immunotherapy and Dr.Rosenberg research. Dr. Jim Allison and Ipi are featured as well around the 1.22hr mark. Best Wishes!!!Ed https://www.youtube.com/watch?v=yQMlzXcwsdQ

                                                                                                                            ed williams
                                                                                                                            Participant

                                                                                                                              Hi Brian and Josh, I have some more for you if you are up to it. This one features Dr. Steven Rosenberg of the NIH who I believe trained Dr. Hwu before he went to MD Anderson. If you go to the 1.14 hr mark of the documentary it starts to talk about Immunotherapy and Dr.Rosenberg research. Dr. Jim Allison and Ipi are featured as well around the 1.22hr mark. Best Wishes!!!Ed https://www.youtube.com/watch?v=yQMlzXcwsdQ

                                                                                                                              ed williams
                                                                                                                              Participant

                                                                                                                                Hi Brian and Josh, I have some more for you if you are up to it. This one features Dr. Steven Rosenberg of the NIH who I believe trained Dr. Hwu before he went to MD Anderson. If you go to the 1.14 hr mark of the documentary it starts to talk about Immunotherapy and Dr.Rosenberg research. Dr. Jim Allison and Ipi are featured as well around the 1.22hr mark. Best Wishes!!!Ed https://www.youtube.com/watch?v=yQMlzXcwsdQ

                                                                                                                                Mat
                                                                                                                                Participant

                                                                                                                                  Brian, good to hear!

                                                                                                                                  Mat
                                                                                                                                  Participant

                                                                                                                                    Brian, good to hear!

                                                                                                                                    Mat
                                                                                                                                    Participant

                                                                                                                                      Brian, good to hear!

                                                                                                                                      BrianP
                                                                                                                                      Participant

                                                                                                                                        I haven't watched Ed's link so I'll go back and take a look at that.  Not sure how scientific Vruti's 40/30 was but that's what she shared with me.

                                                                                                                                        I go back next week for the 3rd Ipi and 1st scan since startting.  Feeling good.  Only side effect so far was a pretty good rash for about 10 days after the initial infusion.  Since then nothing.  Still keeping you in my daily prayers.  Hang tough.

                                                                                                                                      Scooby123
                                                                                                                                      Participant

                                                                                                                                        Hi Josh so good to hear from you Hun. Pleased brain stable and you have a option on treatment. The guys have given you a lot to think about. Sorry I do not know much about Till treatment only learning from others on this wounderful sight. I want you to know I am praying for you and sending hugs.

                                                                                                                                        scooby

                                                                                                                                        Scooby123
                                                                                                                                        Participant

                                                                                                                                          Hi Josh so good to hear from you Hun. Pleased brain stable and you have a option on treatment. The guys have given you a lot to think about. Sorry I do not know much about Till treatment only learning from others on this wounderful sight. I want you to know I am praying for you and sending hugs.

                                                                                                                                          scooby

                                                                                                                                          Scooby123
                                                                                                                                          Participant

                                                                                                                                            Hi Josh so good to hear from you Hun. Pleased brain stable and you have a option on treatment. The guys have given you a lot to think about. Sorry I do not know much about Till treatment only learning from others on this wounderful sight. I want you to know I am praying for you and sending hugs.

                                                                                                                                            scooby

                                                                                                                                            Scooby123
                                                                                                                                            Participant

                                                                                                                                              Hi Josh so good to hear from you Hun. Pleased brain stable and you have a option on treatment. The guys have given you a lot to think about. Sorry I do not know much about Till treatment only learning from others on this wounderful sight. I want you to know I am praying for you and sending hugs.

                                                                                                                                              scooby

                                                                                                                                              Scooby123
                                                                                                                                              Participant

                                                                                                                                                Hi Josh so good to hear from you Hun. Pleased brain stable and you have a option on treatment. The guys have given you a lot to think about. Sorry I do not know much about Till treatment only learning from others on this wounderful sight. I want you to know I am praying for you and sending hugs.

                                                                                                                                                scooby

                                                                                                                                                Scooby123
                                                                                                                                                Participant

                                                                                                                                                  Hi Josh so good to hear from you Hun. Pleased brain stable and you have a option on treatment. The guys have given you a lot to think about. Sorry I do not know much about Till treatment only learning from others on this wounderful sight. I want you to know I am praying for you and sending hugs.

                                                                                                                                                  scooby

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