National Cancer Institute (NCI) t-cell therapy clinical trial
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National Cancer Institute (NCI) t-cell therapy clinical trial

› Forums › General Melanoma Community › National Cancer Institute (NCI) t-cell therapy clinical trial

  • Post
    • February 16, 2015 at 9:10 pm
    AmandaLivingston
    Participant

    My husband is a stage 4 melanoma patient at UCSF who has been on PD-1 for the last 7 months. He has three main tumors in his liver that are being treated and with a combo of PD-1 and a couple of chemo embolization surgeries his scans have stayed mostly 'status quo' since he was diagnosed. No spread outside the liver and no major growth in the liver.

     

    We just got back from the National Cancer Intitute (NCI) and was accepted into a t-cell therapy clinical trial. It's excellent news and we're in the process doing our research and getting opinions from his melanoma specialist and interventional radiologist at UCSF just to ensure it's the right decision for right now. It seems like a slam dunk but as you all know it's a huge lifestyle shift to move across the country for such an intensive treatment.

     

    Has anyone on the forum gone through it and had a good or bad experience within the last year or two? I found threads from 2012/2013 but treatments change so quickly.

Viewing 8 reply threads
  • Replies
      • February 16, 2015 at 10:39 pm
      arthurjedi007
      Participant

      I assume you are talking about TIL? As long as your husband is strong and in decent health then I believe it is a good treatment to try. I didn't do it last November when I had the opportunity because I was warned about the need of being in strong good health. But several others have done it and may chime in.

      Artie

      • February 16, 2015 at 10:39 pm
      arthurjedi007
      Participant

      I assume you are talking about TIL? As long as your husband is strong and in decent health then I believe it is a good treatment to try. I didn't do it last November when I had the opportunity because I was warned about the need of being in strong good health. But several others have done it and may chime in.

      Artie

      • February 16, 2015 at 10:39 pm
      arthurjedi007
      Participant

      I assume you are talking about TIL? As long as your husband is strong and in decent health then I believe it is a good treatment to try. I didn't do it last November when I had the opportunity because I was warned about the need of being in strong good health. But several others have done it and may chime in.

      Artie

        • February 16, 2015 at 10:55 pm
        AmandaLivingston
        Participant

        Yes it's TIL – yeah he's 27 and in great health overall otherwise. 

        • February 16, 2015 at 10:55 pm
        AmandaLivingston
        Participant

        Yes it's TIL – yeah he's 27 and in great health overall otherwise. 

        • February 16, 2015 at 10:55 pm
        AmandaLivingston
        Participant

        Yes it's TIL – yeah he's 27 and in great health overall otherwise. 

      • February 16, 2015 at 11:09 pm
      ed williams
      Participant

      Hi Amanda, I have watched a couple of video presentation by Dr. Patrick Hwu of M.D. Anderson in Houston, Texas. He is one of the big names in the field. You can watch a video on youtube, from the summer of 2013 titled " T-cell Adoptive Therapy for Melanoma – Melanoma Education Symposium, Patrick Hwu MD." Wishing your husband the best with the treatment. Ed 

      • February 16, 2015 at 11:09 pm
      ed williams
      Participant

      Hi Amanda, I have watched a couple of video presentation by Dr. Patrick Hwu of M.D. Anderson in Houston, Texas. He is one of the big names in the field. You can watch a video on youtube, from the summer of 2013 titled " T-cell Adoptive Therapy for Melanoma – Melanoma Education Symposium, Patrick Hwu MD." Wishing your husband the best with the treatment. Ed 

      • February 16, 2015 at 11:09 pm
      ed williams
      Participant

      Hi Amanda, I have watched a couple of video presentation by Dr. Patrick Hwu of M.D. Anderson in Houston, Texas. He is one of the big names in the field. You can watch a video on youtube, from the summer of 2013 titled " T-cell Adoptive Therapy for Melanoma – Melanoma Education Symposium, Patrick Hwu MD." Wishing your husband the best with the treatment. Ed 

        • February 17, 2015 at 12:18 am
        AmandaLivingston
        Participant

        I didn't even think about YouTube thanks for the recommendation – watching it now!

        • February 17, 2015 at 12:18 am
        AmandaLivingston
        Participant

        I didn't even think about YouTube thanks for the recommendation – watching it now!

        • February 17, 2015 at 12:18 am
        AmandaLivingston
        Participant

        I didn't even think about YouTube thanks for the recommendation – watching it now!

      • February 17, 2015 at 2:55 am
      ncdaniel
      Participant

      My wife was accepted in NIH TIL program which I believe is one of the few opportunities to achieve NED status. Unforuntaley in my wifes case the tumor was removed and cells grown but we went last November for implant of the cells and they found bleeding tumors in her intestine and were not able to implant the cells. I would jump at the chance for TIL. The people at NOH are top notch people and what they are doing is giving some with Melanoma another chance. The rest of my wifes story is we returned home she went through Chemo since she could not get on PD-1 and sadly lost her battle last July. Good luck with TIL hope it works and I read your husband is NED.

      • February 17, 2015 at 2:55 am
      ncdaniel
      Participant

      My wife was accepted in NIH TIL program which I believe is one of the few opportunities to achieve NED status. Unforuntaley in my wifes case the tumor was removed and cells grown but we went last November for implant of the cells and they found bleeding tumors in her intestine and were not able to implant the cells. I would jump at the chance for TIL. The people at NOH are top notch people and what they are doing is giving some with Melanoma another chance. The rest of my wifes story is we returned home she went through Chemo since she could not get on PD-1 and sadly lost her battle last July. Good luck with TIL hope it works and I read your husband is NED.

      • February 17, 2015 at 2:55 am
      ncdaniel
      Participant

      My wife was accepted in NIH TIL program which I believe is one of the few opportunities to achieve NED status. Unforuntaley in my wifes case the tumor was removed and cells grown but we went last November for implant of the cells and they found bleeding tumors in her intestine and were not able to implant the cells. I would jump at the chance for TIL. The people at NOH are top notch people and what they are doing is giving some with Melanoma another chance. The rest of my wifes story is we returned home she went through Chemo since she could not get on PD-1 and sadly lost her battle last July. Good luck with TIL hope it works and I read your husband is NED.

        • February 17, 2015 at 2:23 pm
        Maureen038
        Participant

        My husband completed the TIL therapy in the summer of 2013. The worst part was the IL2 which is the last part of the therapy. I spent the night in his room two nights for that part. The staff is incredible and very supportive. He was not considered a responder because two lung nodules out of nine continued to grow. He immediately went on the ipi/nivo trial where everything became stable except one lung nodule that continued to grow slowly throughout the year he was on trial. He just had VATS surgery at NIH this January and is getting infusions of Opdivo( nivolumbab ) every two weeks. He feels great! Once again the staff was incredible. Your husband will be in great hands! They are extremely safety conscious and are constantly checking on the patient. Good luck!! We live in Maryland so if you need any advice or support, please private message me.

        Maureen

        • February 17, 2015 at 2:23 pm
        Maureen038
        Participant

        My husband completed the TIL therapy in the summer of 2013. The worst part was the IL2 which is the last part of the therapy. I spent the night in his room two nights for that part. The staff is incredible and very supportive. He was not considered a responder because two lung nodules out of nine continued to grow. He immediately went on the ipi/nivo trial where everything became stable except one lung nodule that continued to grow slowly throughout the year he was on trial. He just had VATS surgery at NIH this January and is getting infusions of Opdivo( nivolumbab ) every two weeks. He feels great! Once again the staff was incredible. Your husband will be in great hands! They are extremely safety conscious and are constantly checking on the patient. Good luck!! We live in Maryland so if you need any advice or support, please private message me.

        Maureen

        • February 17, 2015 at 2:23 pm
        Maureen038
        Participant

        My husband completed the TIL therapy in the summer of 2013. The worst part was the IL2 which is the last part of the therapy. I spent the night in his room two nights for that part. The staff is incredible and very supportive. He was not considered a responder because two lung nodules out of nine continued to grow. He immediately went on the ipi/nivo trial where everything became stable except one lung nodule that continued to grow slowly throughout the year he was on trial. He just had VATS surgery at NIH this January and is getting infusions of Opdivo( nivolumbab ) every two weeks. He feels great! Once again the staff was incredible. Your husband will be in great hands! They are extremely safety conscious and are constantly checking on the patient. Good luck!! We live in Maryland so if you need any advice or support, please private message me.

        Maureen

        • February 19, 2015 at 1:25 am
        tschmith
        Participant

        Hi Amanda!  I was a patient at NIH and participated in something similar to the TIL.  Your husband will receive excellent care! I wasn't considered a repsonder and began Keytruda (Pembrolizumab) shortly after the NIH trial.  The two turned out to be a good combination therapy.  I'll soon receive my 12th Keytruda infusion.  So far tumors are shrinking and some are resolved.  

        All my best to you!

        Good luck!

        Terrie

        • February 19, 2015 at 1:25 am
        tschmith
        Participant

        Hi Amanda!  I was a patient at NIH and participated in something similar to the TIL.  Your husband will receive excellent care! I wasn't considered a repsonder and began Keytruda (Pembrolizumab) shortly after the NIH trial.  The two turned out to be a good combination therapy.  I'll soon receive my 12th Keytruda infusion.  So far tumors are shrinking and some are resolved.  

        All my best to you!

        Good luck!

        Terrie

        • February 20, 2015 at 3:35 am
        AmandaLivingston
        Participant

        Wow! That's great about the Keytruda combo. He's been on keytruda for 7 months so we're hoping that will give him a boost too so I'll be sure to report back results. Thank you for responding!

        • February 20, 2015 at 3:35 am
        AmandaLivingston
        Participant

        Wow! That's great about the Keytruda combo. He's been on keytruda for 7 months so we're hoping that will give him a boost too so I'll be sure to report back results. Thank you for responding!

        • February 20, 2015 at 3:35 am
        AmandaLivingston
        Participant

        Wow! That's great about the Keytruda combo. He's been on keytruda for 7 months so we're hoping that will give him a boost too so I'll be sure to report back results. Thank you for responding!

        • February 19, 2015 at 1:25 am
        tschmith
        Participant

        Hi Amanda!  I was a patient at NIH and participated in something similar to the TIL.  Your husband will receive excellent care! I wasn't considered a repsonder and began Keytruda (Pembrolizumab) shortly after the NIH trial.  The two turned out to be a good combination therapy.  I'll soon receive my 12th Keytruda infusion.  So far tumors are shrinking and some are resolved.  

        All my best to you!

        Good luck!

        Terrie

        • February 20, 2015 at 3:37 am
        AmandaLivingston
        Participant

        Thanks for responding – that's such great news that he's stable and feeling great! We just booked all our travel so we'll be out there the first week of March. I'll report back!

        • February 20, 2015 at 3:37 am
        AmandaLivingston
        Participant

        Thanks for responding – that's such great news that he's stable and feeling great! We just booked all our travel so we'll be out there the first week of March. I'll report back!

        • February 20, 2015 at 3:37 am
        AmandaLivingston
        Participant

        Thanks for responding – that's such great news that he's stable and feeling great! We just booked all our travel so we'll be out there the first week of March. I'll report back!

        • February 20, 2015 at 3:39 am
        AmandaLivingston
        Participant

        Thanks for responding! I'm so sorry to hear about your wife – your message really made me realize that the time to do this is now because you just never know what's around the corner. I'll be sure to report back once we're on the other side.

        • February 20, 2015 at 3:39 am
        AmandaLivingston
        Participant

        Thanks for responding! I'm so sorry to hear about your wife – your message really made me realize that the time to do this is now because you just never know what's around the corner. I'll be sure to report back once we're on the other side.

        • February 20, 2015 at 3:39 am
        AmandaLivingston
        Participant

        Thanks for responding! I'm so sorry to hear about your wife – your message really made me realize that the time to do this is now because you just never know what's around the corner. I'll be sure to report back once we're on the other side.

        • March 3, 2015 at 4:52 am
        ncdaniel
        Participant

        Amanda, just wondering if you are proceeding with TIL at NIH? I know this is a big step but well worth the try.

        • March 3, 2015 at 4:52 am
        ncdaniel
        Participant

        Amanda, just wondering if you are proceeding with TIL at NIH? I know this is a big step but well worth the try.

        • March 3, 2015 at 4:52 am
        ncdaniel
        Participant

        Amanda, just wondering if you are proceeding with TIL at NIH? I know this is a big step but well worth the try.

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