TIL update
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TIL update

› Forums › General Melanoma Community › TIL update

  • Post
    • October 3, 2012 at 5:36 pm
    Phil S
    Participant
    We got good news this week, Phil’s scans on Monday showed that his brain MRI is fine, his lung tumors are stable, and his stomach cavity tumors are shrinking slowly. These scans were almost 5 months after Phil received his T cells during the TIL trial in Houston. So we are cautiously pleased with these results and now get another three months with no treatment before his next scans to enjoy our kids and a much anticipated trip to Orlando. Phil’s blood counts have rebounded nicely and he will most likely out walk us all at the Disney parks.

    Just to encourage any stage 4 people who need a story of hope, Phil needed an emergency craniotomy a year ago, had WBR, six rounds of biochemo, and TIL, so from September 2011 to June 2012 he had non stop treatment! But, the great thing about TIL is once it’s done you just hope the immune system takes over! Phil has been feeling well and hasn’t had any treatment since the second round of high dose IL2 (part of the TIL trial) the first week of June. So, to us having the whole summer and now the whole Fall without treatment and with stable disease is an answer to our prayers. So to all the warriors in the battle, keep fighting, you just never know with this disease. And, to all the warriors who are looking down on us, your courage has inspired us and we have not forgotten you! God bless, Valerie (Phil’s wife)

Viewing 29 reply threads
  • Replies
      • October 3, 2012 at 5:45 pm
      aldakota22
      Participant

      Great post.Always happy to read these stories of hope.Go enjoy your trip to Orlando.In my prayers that  you have kicked melanomas butt. Beat the Beast.  Al

      • October 3, 2012 at 5:45 pm
      aldakota22
      Participant

      Great post.Always happy to read these stories of hope.Go enjoy your trip to Orlando.In my prayers that  you have kicked melanomas butt. Beat the Beast.  Al

      • October 3, 2012 at 5:45 pm
      aldakota22
      Participant

      Great post.Always happy to read these stories of hope.Go enjoy your trip to Orlando.In my prayers that  you have kicked melanomas butt. Beat the Beast.  Al

      • October 3, 2012 at 5:51 pm
      susanr
      Participant

      Good For You !!!!!  I love It !!!!!!  Love to hear stories like this !!!!!  Thank You for posting This !!!!!!!!!

      • October 3, 2012 at 5:51 pm
      susanr
      Participant

      Good For You !!!!!  I love It !!!!!!  Love to hear stories like this !!!!!  Thank You for posting This !!!!!!!!!

      • October 3, 2012 at 5:51 pm
      susanr
      Participant

      Good For You !!!!!  I love It !!!!!!  Love to hear stories like this !!!!!  Thank You for posting This !!!!!!!!!

      • October 3, 2012 at 7:05 pm
      Swanee
      Participant

      Thank you so much for sharing and posting update of Phil's progress. I needed to hear this today as it appears, I too, may be traveling this treatment path  and have been scouring the board for any success stories for this TIL treatment, so your post is very timely for myself.  Congratulations to both of you (the caregiver and the patient) on this melanoma success story.   Wishing you continued good health and a fabulous time on your family trip to Orlando!  Blessings and courage to all who continue in this battle.    Swanee

      • October 3, 2012 at 7:05 pm
      Swanee
      Participant

      Thank you so much for sharing and posting update of Phil's progress. I needed to hear this today as it appears, I too, may be traveling this treatment path  and have been scouring the board for any success stories for this TIL treatment, so your post is very timely for myself.  Congratulations to both of you (the caregiver and the patient) on this melanoma success story.   Wishing you continued good health and a fabulous time on your family trip to Orlando!  Blessings and courage to all who continue in this battle.    Swanee

      • October 3, 2012 at 7:05 pm
      Swanee
      Participant

      Thank you so much for sharing and posting update of Phil's progress. I needed to hear this today as it appears, I too, may be traveling this treatment path  and have been scouring the board for any success stories for this TIL treatment, so your post is very timely for myself.  Congratulations to both of you (the caregiver and the patient) on this melanoma success story.   Wishing you continued good health and a fabulous time on your family trip to Orlando!  Blessings and courage to all who continue in this battle.    Swanee

      • October 3, 2012 at 7:28 pm
      rrrule32
      Participant

      Hi Valerie,

      I've looked at Phil's profile and I'm just curious, did he only have one brain tumor?  Was the TIL treatment done in Houston for a clinical trial?  I have a fiance with 5 brain mets.  She underwent radiation and is now on Vemurafenib.  I would like to get her in a clinical trial involving the TIL treatment but her brain mets exclude her. 

      Thank you,

      Travis

        • October 3, 2012 at 8:24 pm
        Phil S
        Participant
        Travis, Phil had three brain tumors and did WBR after his craniotomy removed the bleeding tumor. His other brain tumors responded to radiation and he has been stable in his brain since NoVemBER 2011.We went
        to Md Anderson for biochemo, and they offered us the TILtrial this Spring. Getting into TIL, is all about timing, having them remove a tumor, hoping the T cells grow, and having stable brain when they have the slot available. Please email me directly with any questions, it’s definitely worth pursuing at MDAnderson. Also, if her HLAA2 blood test is positive, she may also have a greater chance to get into the trial.
        • October 4, 2012 at 1:28 pm
        rrrule32
        Participant

        Thank you, Valerie.  I was just curious because I called them and they said because she had 5 brain tumors that she wouldn't qualify for these TIL clinical trials.  Even if those 5 tumors are stable, their limit is 3.  That's why I was curious how many Phil had.  Thank you for providing me with that information.  Good luck to you two and hopefully the good news keeps rolling in.

        • October 5, 2012 at 2:42 am
        Phil S
        Participant
        Just to clarify, my understanding is that the TIL trial at the NIH has the 3 brain tumor cap. I have known of people offered TIL with over three brain mets at MDAnderson in Houston, they are much more lenient with this issue. The key is “stable” brain mets and then it’s doctor’s discretion, MDAnderson likes to think outside the box and they recognize that brain mets are a fact of life with regards to melanoma. Best of luck,, Valerie
        • October 5, 2012 at 2:42 am
        Phil S
        Participant
        Just to clarify, my understanding is that the TIL trial at the NIH has the 3 brain tumor cap. I have known of people offered TIL with over three brain mets at MDAnderson in Houston, they are much more lenient with this issue. The key is “stable” brain mets and then it’s doctor’s discretion, MDAnderson likes to think outside the box and they recognize that brain mets are a fact of life with regards to melanoma. Best of luck,, Valerie
        • October 5, 2012 at 2:42 am
        Phil S
        Participant
        Just to clarify, my understanding is that the TIL trial at the NIH has the 3 brain tumor cap. I have known of people offered TIL with over three brain mets at MDAnderson in Houston, they are much more lenient with this issue. The key is “stable” brain mets and then it’s doctor’s discretion, MDAnderson likes to think outside the box and they recognize that brain mets are a fact of life with regards to melanoma. Best of luck,, Valerie
        • October 4, 2012 at 1:28 pm
        rrrule32
        Participant

        Thank you, Valerie.  I was just curious because I called them and they said because she had 5 brain tumors that she wouldn't qualify for these TIL clinical trials.  Even if those 5 tumors are stable, their limit is 3.  That's why I was curious how many Phil had.  Thank you for providing me with that information.  Good luck to you two and hopefully the good news keeps rolling in.

        • October 4, 2012 at 1:28 pm
        rrrule32
        Participant

        Thank you, Valerie.  I was just curious because I called them and they said because she had 5 brain tumors that she wouldn't qualify for these TIL clinical trials.  Even if those 5 tumors are stable, their limit is 3.  That's why I was curious how many Phil had.  Thank you for providing me with that information.  Good luck to you two and hopefully the good news keeps rolling in.

        • October 3, 2012 at 8:24 pm
        Phil S
        Participant
        Travis, Phil had three brain tumors and did WBR after his craniotomy removed the bleeding tumor. His other brain tumors responded to radiation and he has been stable in his brain since NoVemBER 2011.We went
        to Md Anderson for biochemo, and they offered us the TILtrial this Spring. Getting into TIL, is all about timing, having them remove a tumor, hoping the T cells grow, and having stable brain when they have the slot available. Please email me directly with any questions, it’s definitely worth pursuing at MDAnderson. Also, if her HLAA2 blood test is positive, she may also have a greater chance to get into the trial.
        • October 3, 2012 at 8:24 pm
        Phil S
        Participant
        Travis, Phil had three brain tumors and did WBR after his craniotomy removed the bleeding tumor. His other brain tumors responded to radiation and he has been stable in his brain since NoVemBER 2011.We went
        to Md Anderson for biochemo, and they offered us the TILtrial this Spring. Getting into TIL, is all about timing, having them remove a tumor, hoping the T cells grow, and having stable brain when they have the slot available. Please email me directly with any questions, it’s definitely worth pursuing at MDAnderson. Also, if her HLAA2 blood test is positive, she may also have a greater chance to get into the trial.
      • October 3, 2012 at 7:28 pm
      rrrule32
      Participant

      Hi Valerie,

      I've looked at Phil's profile and I'm just curious, did he only have one brain tumor?  Was the TIL treatment done in Houston for a clinical trial?  I have a fiance with 5 brain mets.  She underwent radiation and is now on Vemurafenib.  I would like to get her in a clinical trial involving the TIL treatment but her brain mets exclude her. 

      Thank you,

      Travis

      • October 3, 2012 at 7:28 pm
      rrrule32
      Participant

      Hi Valerie,

      I've looked at Phil's profile and I'm just curious, did he only have one brain tumor?  Was the TIL treatment done in Houston for a clinical trial?  I have a fiance with 5 brain mets.  She underwent radiation and is now on Vemurafenib.  I would like to get her in a clinical trial involving the TIL treatment but her brain mets exclude her. 

      Thank you,

      Travis

      • October 3, 2012 at 11:12 pm
      TSchulz
      Participant

      Congratulations on the positive scan results. I am so happy the TIL cells are chewing away at those pesky melanoma cells.  Like Phil, I did the TIL treatment at NIH about the same time and haven't had to undergo any further treatment to this point – after being on some treatment regimen for almost a full year up to that point.  It is a little strange not having "anything to do" after the past year, but I think I'll adjust.  

      All the best of luck that the treatment continues to work for him and your whole family.  Enjoy your deserved vacation.  

      Troy

        • October 4, 2012 at 1:08 am
        NYKaren
        Participant
        Great news, Valerie. I’m so happy for you both.
        Enjoy Disney.
        Be well,
        Karen
        • October 4, 2012 at 1:08 am
        NYKaren
        Participant
        Great news, Valerie. I’m so happy for you both.
        Enjoy Disney.
        Be well,
        Karen
        • October 4, 2012 at 1:08 am
        NYKaren
        Participant
        Great news, Valerie. I’m so happy for you both.
        Enjoy Disney.
        Be well,
        Karen
      • October 3, 2012 at 11:12 pm
      TSchulz
      Participant

      Congratulations on the positive scan results. I am so happy the TIL cells are chewing away at those pesky melanoma cells.  Like Phil, I did the TIL treatment at NIH about the same time and haven't had to undergo any further treatment to this point – after being on some treatment regimen for almost a full year up to that point.  It is a little strange not having "anything to do" after the past year, but I think I'll adjust.  

      All the best of luck that the treatment continues to work for him and your whole family.  Enjoy your deserved vacation.  

      Troy

      • October 3, 2012 at 11:12 pm
      TSchulz
      Participant

      Congratulations on the positive scan results. I am so happy the TIL cells are chewing away at those pesky melanoma cells.  Like Phil, I did the TIL treatment at NIH about the same time and haven't had to undergo any further treatment to this point – after being on some treatment regimen for almost a full year up to that point.  It is a little strange not having "anything to do" after the past year, but I think I'll adjust.  

      All the best of luck that the treatment continues to work for him and your whole family.  Enjoy your deserved vacation.  

      Troy

      • October 4, 2012 at 1:44 am
      Angela C
      Participant

      Congrats, Valerie and Phil!! I'm so happy to hear that you got a good report! I'll continue to pray for both of you and hope you get even better news at your next follow up. Have a great time at Disney. You guys deserve it!!

      ~Angela

      • October 4, 2012 at 1:44 am
      Angela C
      Participant

      Congrats, Valerie and Phil!! I'm so happy to hear that you got a good report! I'll continue to pray for both of you and hope you get even better news at your next follow up. Have a great time at Disney. You guys deserve it!!

      ~Angela

      • October 4, 2012 at 1:44 am
      Angela C
      Participant

      Congrats, Valerie and Phil!! I'm so happy to hear that you got a good report! I'll continue to pray for both of you and hope you get even better news at your next follow up. Have a great time at Disney. You guys deserve it!!

      ~Angela

      • October 4, 2012 at 5:33 pm
      JerryfromFauq
      Participant

      Whoopee!

      • October 4, 2012 at 5:33 pm
      JerryfromFauq
      Participant

      Whoopee!

      • October 4, 2012 at 5:33 pm
      JerryfromFauq
      Participant

      Whoopee!

      • October 5, 2012 at 3:26 pm
      Ali
      Participant

      YAY!!!  Disney World sounds like just the place to celebrate!  Hope your news continues to to be good.  So, so happy about this!!!

      Ali

      • October 5, 2012 at 3:26 pm
      Ali
      Participant

      YAY!!!  Disney World sounds like just the place to celebrate!  Hope your news continues to to be good.  So, so happy about this!!!

      Ali

      • October 5, 2012 at 3:26 pm
      Ali
      Participant

      YAY!!!  Disney World sounds like just the place to celebrate!  Hope your news continues to to be good.  So, so happy about this!!!

      Ali

      • October 6, 2012 at 5:52 am
      swissfarm7
      Participant

      Glad things are going so well!  I'm relatively new to this board and am not familiar with many of the acronyms referenced here.  What are WBR and TIL? 

      Best,

      Colleen

       

      • October 6, 2012 at 5:52 am
      swissfarm7
      Participant

      Glad things are going so well!  I'm relatively new to this board and am not familiar with many of the acronyms referenced here.  What are WBR and TIL? 

      Best,

      Colleen

       

      • October 6, 2012 at 5:52 am
      swissfarm7
      Participant

      Glad things are going so well!  I'm relatively new to this board and am not familiar with many of the acronyms referenced here.  What are WBR and TIL? 

      Best,

      Colleen

       

      • October 15, 2012 at 10:53 am
      shellebrownies
      Participant

      Glad to hear from you and Phil, Valerie. Been thinking of you two of late and wondering how you were faring. : )

      I am thrilled to hear that you have found such a promising treatment and will pray that he continues to improve. 

      Hugs to you all!

      Michelle

      • October 15, 2012 at 10:53 am
      shellebrownies
      Participant

      Glad to hear from you and Phil, Valerie. Been thinking of you two of late and wondering how you were faring. : )

      I am thrilled to hear that you have found such a promising treatment and will pray that he continues to improve. 

      Hugs to you all!

      Michelle

        • October 17, 2012 at 6:51 pm
        Phil S
        Participant
        Michelle, Thanks for the positive and encouraging post. I have also wondered how you and your children are doing, glad to see you still check in on us, I often pray for all the caregivers who have lost someone to melanoma. You are a strong lady! God bless, Valerie
        • October 17, 2012 at 6:51 pm
        Phil S
        Participant
        Michelle, Thanks for the positive and encouraging post. I have also wondered how you and your children are doing, glad to see you still check in on us, I often pray for all the caregivers who have lost someone to melanoma. You are a strong lady! God bless, Valerie
        • October 17, 2012 at 6:51 pm
        Phil S
        Participant
        Michelle, Thanks for the positive and encouraging post. I have also wondered how you and your children are doing, glad to see you still check in on us, I often pray for all the caregivers who have lost someone to melanoma. You are a strong lady! God bless, Valerie
      • October 15, 2012 at 10:53 am
      shellebrownies
      Participant

      Glad to hear from you and Phil, Valerie. Been thinking of you two of late and wondering how you were faring. : )

      I am thrilled to hear that you have found such a promising treatment and will pray that he continues to improve. 

      Hugs to you all!

      Michelle

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