Trial Update
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Trial Update

› Forums › General Melanoma Community › Trial Update

  • Post
    • January 28, 2017 at 4:43 pm
    BrianP
    Participant

    As some of you know I started the same trial Josh did about 2 months after he started.  Just returned from my first scan at 6 weeks and basically my disease is stable since starting the trial.  All you "old timers" know this is great news.  I've said in the past that stable is a tie and a tie is a win in this game.  Having said that you all know everytime you go in that machine as much as you try to dampen expectations you all hope to get that miraculous result coming out.  The nurses and doctors were pleased with the result and say the real story will be told in six weeks at my 12 week scan.  All that remains treatment wise in the trial is the 4th ipi infusion and then 2 or 3 follow up scans. 

    I think the trial is a pretty fascinating trial.  Here's a brief explanation.  The first phase of trial is the leukapheresis which is the process in which they hook up an input and output to you and run your blood through a machine that collects your white blood cells.  Next they filter your white blood cells in an attempt to gather your memory white cells (I think they are called the B cells).  Once they have these memory cells they manipulate them inorder to make them more likely to find melanoma cells.  Once they do this manipulation they harvest these new and improved cells into about 25 – 30 billion cells.  This process takes about 8-10 weeks and when it's done you start phase II.  Phase II they reinfuse these new cells and start a 14 day period of low does IL-2 to help the infused cells in their new environment.  The low does IL-2 is just 2 self injections a day and nothing like high does IL-2.  24 hours after the white cells infusion you have your first of 4 ipi infusions.  The side effects generally are the same as Ipi alone. 

    As Josh's, probably mine, and the past trial show this isn't the cure as of right now but to me there seems like so much potential.  If you can find a way to manipulate a persons white cells to fight cancer that would be a pretty powerful tool.  Below is a link to the last trial they tried this.  As far as I can tell it is essentially the same trial Josh and I are on but I think there are some advancements in the machines and techniques of filtering and manipulating the white cells.  The first thing that jumps out at me is whether the results are that much different from ipi monotherapy.  I think the researchers are trying to make a case but I'm not sure.

    http://ascopubs.org/doi/full/10.1200/JCO.2015.65.5142

    All and all I definitely have no regrets about trying this trial and I'm pleased with the result but even as I continue to hope for that "miraculous" scan report in 6 weeks I also know realistically this isn't my last treatment.  Thanks everyone for your support on this site, even you Celeste ;).

Viewing 26 reply threads
  • Replies
      • January 28, 2017 at 5:14 pm
      BBrakhane
      Participant

      Thanks for the info on how that all works, learned a lot from that.  Hope your results continue be good!

      • January 28, 2017 at 5:14 pm
      BBrakhane
      Participant

      Thanks for the info on how that all works, learned a lot from that.  Hope your results continue be good!

        • January 30, 2017 at 1:49 am
        BrianP
        Participant

        Thanks.

        • January 30, 2017 at 1:49 am
        BrianP
        Participant

        Thanks.

        • January 30, 2017 at 1:49 am
        BrianP
        Participant

        Thanks.

      • January 28, 2017 at 5:14 pm
      BBrakhane
      Participant

      Thanks for the info on how that all works, learned a lot from that.  Hope your results continue be good!

      • January 28, 2017 at 5:35 pm
      Scooby123
      Participant
      So pleased for you Brian thats great news. I am stable for now and so thankful for ippi. Hope to hear update on next scans. Keep well hun.
      Scooby x
      • January 28, 2017 at 5:35 pm
      Scooby123
      Participant
      So pleased for you Brian thats great news. I am stable for now and so thankful for ippi. Hope to hear update on next scans. Keep well hun.
      Scooby x
        • January 30, 2017 at 1:49 am
        BrianP
        Participant

        Thanks Scooby.  You keep well also.

        • January 30, 2017 at 1:49 am
        BrianP
        Participant

        Thanks Scooby.  You keep well also.

        • January 30, 2017 at 1:49 am
        BrianP
        Participant

        Thanks Scooby.  You keep well also.

      • January 28, 2017 at 5:35 pm
      Scooby123
      Participant
      So pleased for you Brian thats great news. I am stable for now and so thankful for ippi. Hope to hear update on next scans. Keep well hun.
      Scooby x
      • January 28, 2017 at 5:46 pm
      jennunicorn
      Participant

      That is a really interesting trial, thanks for explaining Brain. Stable is great and I'm going to keep a positive outlook for the next scan showing even better results!

      • January 28, 2017 at 5:46 pm
      jennunicorn
      Participant

      That is a really interesting trial, thanks for explaining Brain. Stable is great and I'm going to keep a positive outlook for the next scan showing even better results!

        • January 30, 2017 at 1:50 am
        BrianP
        Participant

        Thanks Jenn!

        • January 30, 2017 at 1:50 am
        BrianP
        Participant

        Thanks Jenn!

        • January 30, 2017 at 1:50 am
        BrianP
        Participant

        Thanks Jenn!

      • January 28, 2017 at 5:46 pm
      jennunicorn
      Participant

      That is a really interesting trial, thanks for explaining Brain. Stable is great and I'm going to keep a positive outlook for the next scan showing even better results!

      • January 28, 2017 at 5:58 pm
      Polymath
      Participant

      Hey Brian,

      Thanks for the plain language explanation of TIL and hoping that your army of white blood cells does serious damage to mel in the next 6 weeks.  Looking forward to hearing about positive results then.  

      Gary

      • January 28, 2017 at 5:58 pm
      Polymath
      Participant

      Hey Brian,

      Thanks for the plain language explanation of TIL and hoping that your army of white blood cells does serious damage to mel in the next 6 weeks.  Looking forward to hearing about positive results then.  

      Gary

        • January 28, 2017 at 7:55 pm
        Spl25
        Participant

        Just to be clear this is a form of ACT, not TIL. It uses peripheral T-cells (T-effectors and T-memory cells) to modify the immune system. Its less invasive than TIL, and targets specific antigens overexpressed on melanoma cells. 

        • January 28, 2017 at 7:55 pm
        Spl25
        Participant

        Just to be clear this is a form of ACT, not TIL. It uses peripheral T-cells (T-effectors and T-memory cells) to modify the immune system. Its less invasive than TIL, and targets specific antigens overexpressed on melanoma cells. 

        • January 28, 2017 at 8:05 pm
        Polymath
        Participant

        Thanks for clarifying that

         

        • January 28, 2017 at 8:05 pm
        Polymath
        Participant

        Thanks for clarifying that

         

        • January 28, 2017 at 8:05 pm
        Polymath
        Participant

        Thanks for clarifying that

         

        • January 28, 2017 at 7:55 pm
        Spl25
        Participant

        Just to be clear this is a form of ACT, not TIL. It uses peripheral T-cells (T-effectors and T-memory cells) to modify the immune system. Its less invasive than TIL, and targets specific antigens overexpressed on melanoma cells. 

        • January 30, 2017 at 1:55 am
        BrianP
        Participant

        Thanks Gary.  Cancerwoman is correct.  I am doing ACT, not TIL although I even here some of the staff at MDA refer to it as TIL sometimes.  One of the big advantages is not having to resect a tumor to do the treatment.  In my current situation resection would have been very tough to do. 

        I happened to see this article yesterday which I thought was pretty cool:

        https://www.technologyreview.com/s/603502/two-infants-treated-with-universal-immune-cells-have-their-cancer-vanish/

        • January 30, 2017 at 1:55 am
        BrianP
        Participant

        Thanks Gary.  Cancerwoman is correct.  I am doing ACT, not TIL although I even here some of the staff at MDA refer to it as TIL sometimes.  One of the big advantages is not having to resect a tumor to do the treatment.  In my current situation resection would have been very tough to do. 

        I happened to see this article yesterday which I thought was pretty cool:

        https://www.technologyreview.com/s/603502/two-infants-treated-with-universal-immune-cells-have-their-cancer-vanish/

        • January 30, 2017 at 1:55 am
        BrianP
        Participant

        Thanks Gary.  Cancerwoman is correct.  I am doing ACT, not TIL although I even here some of the staff at MDA refer to it as TIL sometimes.  One of the big advantages is not having to resect a tumor to do the treatment.  In my current situation resection would have been very tough to do. 

        I happened to see this article yesterday which I thought was pretty cool:

        https://www.technologyreview.com/s/603502/two-infants-treated-with-universal-immune-cells-have-their-cancer-vanish/

      • January 28, 2017 at 5:58 pm
      Polymath
      Participant

      Hey Brian,

      Thanks for the plain language explanation of TIL and hoping that your army of white blood cells does serious damage to mel in the next 6 weeks.  Looking forward to hearing about positive results then.  

      Gary

      • January 28, 2017 at 6:15 pm
      Bubbles
      Participant

      Good to hear from you, Brian!!!  Stable is certainly good news!!  Fingers crossed that the next scans will show even more melanoma demolition by cells in fighting mode!!  Hang in there! love, c

      • January 28, 2017 at 6:15 pm
      Bubbles
      Participant

      Good to hear from you, Brian!!!  Stable is certainly good news!!  Fingers crossed that the next scans will show even more melanoma demolition by cells in fighting mode!!  Hang in there! love, c

        • January 30, 2017 at 1:58 am
        BrianP
        Participant

        Thanks Celeste!  Will be a very interesting next scan to say the least.

        • January 30, 2017 at 1:58 am
        BrianP
        Participant

        Thanks Celeste!  Will be a very interesting next scan to say the least.

        • January 30, 2017 at 1:58 am
        BrianP
        Participant

        Thanks Celeste!  Will be a very interesting next scan to say the least.

      • January 28, 2017 at 6:15 pm
      Bubbles
      Participant

      Good to hear from you, Brian!!!  Stable is certainly good news!!  Fingers crossed that the next scans will show even more melanoma demolition by cells in fighting mode!!  Hang in there! love, c

      • January 28, 2017 at 8:34 pm
      _Paul_
      Participant

      Right on Brian! 

      I agree with you, stable is a win. Anytime the mel is not advancing is a lull on the roller coaster. May yours be long and uneventful.

      – Paul

      • January 28, 2017 at 8:34 pm
      _Paul_
      Participant

      Right on Brian! 

      I agree with you, stable is a win. Anytime the mel is not advancing is a lull on the roller coaster. May yours be long and uneventful.

      – Paul

        • January 30, 2017 at 1:59 am
        BrianP
        Participant

        Thanks Paul.  Can't wait to hear you have a lull in the roller coaster. 

        • January 30, 2017 at 1:59 am
        BrianP
        Participant

        Thanks Paul.  Can't wait to hear you have a lull in the roller coaster. 

        • January 30, 2017 at 1:59 am
        BrianP
        Participant

        Thanks Paul.  Can't wait to hear you have a lull in the roller coaster. 

      • January 28, 2017 at 8:34 pm
      _Paul_
      Participant

      Right on Brian! 

      I agree with you, stable is a win. Anytime the mel is not advancing is a lull on the roller coaster. May yours be long and uneventful.

      – Paul

      • January 29, 2017 at 2:19 am
      Mat
      Participant

      Brian, thanks for the update.  Glad to hear that things are going well and look forward to hearing about the next scans.

      • January 29, 2017 at 2:19 am
      Mat
      Participant

      Brian, thanks for the update.  Glad to hear that things are going well and look forward to hearing about the next scans.

      • January 29, 2017 at 2:19 am
      Mat
      Participant

      Brian, thanks for the update.  Glad to hear that things are going well and look forward to hearing about the next scans.

        • January 29, 2017 at 4:07 pm
        Maureen038
        Participant

        That's wonderful news Brian!! Thanks for including the trial information too. As all stage 4 patients and caregivers know is that you must continually be looking for new combinations if you're not NED. My husband has been on Kadcyla for a year now( he was found to have a high amplification of her-2 mutation at Sloan Kettering for those that don't know his history). He's not NED, but he has only one nodule that has been stable for two years and a few enlarged lymph nodes that are stable too. His liver enzymes are high and may require him to temporarily stop the infusions. We believe Bill is the first melanoma patient to be given this drug so there's no data on how long it will work. We will continue to wish you and everyone on the board the very best!!!

        Maureen

         

        • January 29, 2017 at 4:23 pm
        Bubbles
        Participant

        Maureen!!  Bill's stability is awesome news, too!!!  Give that rattie a big hug of congratulations from me.  So glad to hear a report of his condition.  Hang in there!  Ratties livers have to be tough, don't they?  love, c

        • January 29, 2017 at 4:23 pm
        Bubbles
        Participant

        Maureen!!  Bill's stability is awesome news, too!!!  Give that rattie a big hug of congratulations from me.  So glad to hear a report of his condition.  Hang in there!  Ratties livers have to be tough, don't they?  love, c

        • January 29, 2017 at 4:23 pm
        Bubbles
        Participant

        Maureen!!  Bill's stability is awesome news, too!!!  Give that rattie a big hug of congratulations from me.  So glad to hear a report of his condition.  Hang in there!  Ratties livers have to be tough, don't they?  love, c

        • January 30, 2017 at 1:48 am
        BrianP
        Participant

        Maureen, 

        That's great news.  I think Bill's case is a great example why the NCI-Match trial could be a good option for those patients who have failed many of the standard treatments. 

        Brian

        • January 30, 2017 at 8:30 pm
        Maureen038
        Participant

        Thanks so much Celeste and Brian!! 

        Maureen

        • January 30, 2017 at 8:30 pm
        Maureen038
        Participant

        Thanks so much Celeste and Brian!! 

        Maureen

        • January 30, 2017 at 8:30 pm
        Maureen038
        Participant

        Thanks so much Celeste and Brian!! 

        Maureen

        • January 30, 2017 at 1:48 am
        BrianP
        Participant

        Maureen, 

        That's great news.  I think Bill's case is a great example why the NCI-Match trial could be a good option for those patients who have failed many of the standard treatments. 

        Brian

        • January 30, 2017 at 1:48 am
        BrianP
        Participant

        Maureen, 

        That's great news.  I think Bill's case is a great example why the NCI-Match trial could be a good option for those patients who have failed many of the standard treatments. 

        Brian

        • January 29, 2017 at 4:07 pm
        Maureen038
        Participant

        That's wonderful news Brian!! Thanks for including the trial information too. As all stage 4 patients and caregivers know is that you must continually be looking for new combinations if you're not NED. My husband has been on Kadcyla for a year now( he was found to have a high amplification of her-2 mutation at Sloan Kettering for those that don't know his history). He's not NED, but he has only one nodule that has been stable for two years and a few enlarged lymph nodes that are stable too. His liver enzymes are high and may require him to temporarily stop the infusions. We believe Bill is the first melanoma patient to be given this drug so there's no data on how long it will work. We will continue to wish you and everyone on the board the very best!!!

        Maureen

         

        • January 29, 2017 at 4:07 pm
        Maureen038
        Participant

        That's wonderful news Brian!! Thanks for including the trial information too. As all stage 4 patients and caregivers know is that you must continually be looking for new combinations if you're not NED. My husband has been on Kadcyla for a year now( he was found to have a high amplification of her-2 mutation at Sloan Kettering for those that don't know his history). He's not NED, but he has only one nodule that has been stable for two years and a few enlarged lymph nodes that are stable too. His liver enzymes are high and may require him to temporarily stop the infusions. We believe Bill is the first melanoma patient to be given this drug so there's no data on how long it will work. We will continue to wish you and everyone on the board the very best!!!

        Maureen

         

      • January 30, 2017 at 2:23 am
      Jahendry12
      Participant

      Stable is good! Praying for continued stability or even a miraculous scan in 6 weeks. 

      • January 30, 2017 at 2:23 am
      Jahendry12
      Participant

      Stable is good! Praying for continued stability or even a miraculous scan in 6 weeks. 

      • January 30, 2017 at 2:23 am
      Jahendry12
      Participant

      Stable is good! Praying for continued stability or even a miraculous scan in 6 weeks. 

      • January 30, 2017 at 6:53 pm
      jenny22
      Participant

      Brian- Jsut wanted to add to the others…Congrats on STABLE……and yes that is most definitely in the WIN COLUMN.

      Hoping for more good news on next scans.

      best,

      jenny

      • January 30, 2017 at 6:53 pm
      jenny22
      Participant

      Brian- Jsut wanted to add to the others…Congrats on STABLE……and yes that is most definitely in the WIN COLUMN.

      Hoping for more good news on next scans.

      best,

      jenny

      • January 30, 2017 at 6:53 pm
      jenny22
      Participant

      Brian- Jsut wanted to add to the others…Congrats on STABLE……and yes that is most definitely in the WIN COLUMN.

      Hoping for more good news on next scans.

      best,

      jenny

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