TIL – 0
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TIL – 0

› Forums › General Melanoma Community › TIL – 0

  • Post
    • December 28, 2016 at 4:45 am
    _Paul_
    Participant

    It has been quite the ride. Turns out my intestines were severely impacted with weeks of crap from the painkillers I had been receiving. And my pain was increasing until I ended up on Dilaudid drip. I could not eat for a few days because of excessive bloating and nausea Even trying to swallow oral meds made me heave.

    Opiates bind with receptors in the intestines and everything stops. After trying several types of laxative, the one that got the ball rolling is an injection that prevents the opiates from binding to the receptors. Kinda like pathway inhibitors.

    However at least it prepared me for the nausea to come from the high dose IL-2, starting tomorrow.

    The TIL infusion gave me extreme shivers which required wrapping me in warm blankets like a South Park character, cranking the heat in the room, and 25ml of Demerol. This n spite of a yield of only 15 billion cells, ten times less than I hoped for.

    My temperature spiked to 102, but all in all a walk in the park compared to the days of not eating and the from the extreme bloating. 

    The last two days my appetite returned and I have been mercilessly cracking jokes with the nurses. Some make better victims than others. Heh, heh, heh.

    Tomorrow is the main event. I will try and keep posting.

    – Paul

Viewing 23 reply threads
  • Replies
      • December 28, 2016 at 6:41 am
      snow white
      Participant

      So happy to see your post!  What a nighmare you have been through.  Thats fantastic that you are feeling a bit better after all you have been through.  LOL~I am sure the nurses are loving your jokes (NOT) jk.  My dad was doing the same thing once he felt better, it does help to lighten the mood a bit.  Hoping the main event tomorrow goes smoothly.  Postive thoughts coming your way!!!!  Hang in there 🙂

      xo Jen

        • December 28, 2016 at 12:59 pm
        tschmith
        Participant

        You are so strong!  Superman!

        I went through a TIL-like trial at NIH followed by IL2.  It really wasn't as bad as I thought it would be.

        Praying for you!

        Terrie

        • December 28, 2016 at 12:59 pm
        tschmith
        Participant

        You are so strong!  Superman!

        I went through a TIL-like trial at NIH followed by IL2.  It really wasn't as bad as I thought it would be.

        Praying for you!

        Terrie

        • December 28, 2016 at 12:59 pm
        tschmith
        Participant

        You are so strong!  Superman!

        I went through a TIL-like trial at NIH followed by IL2.  It really wasn't as bad as I thought it would be.

        Praying for you!

        Terrie

      • December 28, 2016 at 6:41 am
      snow white
      Participant

      So happy to see your post!  What a nighmare you have been through.  Thats fantastic that you are feeling a bit better after all you have been through.  LOL~I am sure the nurses are loving your jokes (NOT) jk.  My dad was doing the same thing once he felt better, it does help to lighten the mood a bit.  Hoping the main event tomorrow goes smoothly.  Postive thoughts coming your way!!!!  Hang in there 🙂

      xo Jen

      • December 28, 2016 at 6:41 am
      snow white
      Participant

      So happy to see your post!  What a nighmare you have been through.  Thats fantastic that you are feeling a bit better after all you have been through.  LOL~I am sure the nurses are loving your jokes (NOT) jk.  My dad was doing the same thing once he felt better, it does help to lighten the mood a bit.  Hoping the main event tomorrow goes smoothly.  Postive thoughts coming your way!!!!  Hang in there 🙂

      xo Jen

      • December 28, 2016 at 7:09 pm
      Patrisa
      Participant

      Paul,

      you are by far the coolest person on this forum, i have nothing but admiration for you…

      How calmly and with a sense of humor you are taking it, you inspire me to work on my outlook on life… Thank you for that…

      And thank you for posting, cause we  worry, wait and HOPE every day for some good news from you and every one else dealing with this c..p

      But as i have said it before, you are one tough guy, you and your zest for life will get you through it…

      Will be thinking of you (and others)!

      Love, 

      Patrisa

      • December 28, 2016 at 7:09 pm
      Patrisa
      Participant

      Paul,

      you are by far the coolest person on this forum, i have nothing but admiration for you…

      How calmly and with a sense of humor you are taking it, you inspire me to work on my outlook on life… Thank you for that…

      And thank you for posting, cause we  worry, wait and HOPE every day for some good news from you and every one else dealing with this c..p

      But as i have said it before, you are one tough guy, you and your zest for life will get you through it…

      Will be thinking of you (and others)!

      Love, 

      Patrisa

      • December 28, 2016 at 7:09 pm
      Patrisa
      Participant

      Paul,

      you are by far the coolest person on this forum, i have nothing but admiration for you…

      How calmly and with a sense of humor you are taking it, you inspire me to work on my outlook on life… Thank you for that…

      And thank you for posting, cause we  worry, wait and HOPE every day for some good news from you and every one else dealing with this c..p

      But as i have said it before, you are one tough guy, you and your zest for life will get you through it…

      Will be thinking of you (and others)!

      Love, 

      Patrisa

      • December 28, 2016 at 9:50 pm
      jbronicki
      Participant

      Will be sending out prayers/thoughts/good vibes your way Paul.  So many of us here always think about how you are doing and glad to hear that tomorrow is a step in right direction.  Humor is always preferred in these situations!  I told my dentist last fall when I got my first root canal and he asked me if I preferred to be put under that "I find consciousness to be highly overrated!".  

      Many prayers and wishes for quick action!

       

      • December 28, 2016 at 9:50 pm
      jbronicki
      Participant

      Will be sending out prayers/thoughts/good vibes your way Paul.  So many of us here always think about how you are doing and glad to hear that tomorrow is a step in right direction.  Humor is always preferred in these situations!  I told my dentist last fall when I got my first root canal and he asked me if I preferred to be put under that "I find consciousness to be highly overrated!".  

      Many prayers and wishes for quick action!

       

      • December 28, 2016 at 9:50 pm
      jbronicki
      Participant

      Will be sending out prayers/thoughts/good vibes your way Paul.  So many of us here always think about how you are doing and glad to hear that tomorrow is a step in right direction.  Humor is always preferred in these situations!  I told my dentist last fall when I got my first root canal and he asked me if I preferred to be put under that "I find consciousness to be highly overrated!".  

      Many prayers and wishes for quick action!

       

      • December 29, 2016 at 12:09 am
      Polymath
      Participant

      Hi Paul,

      Your attitude is an inspiration to all of us in the fight.  May the new year bring you joy and satisfaction as you slay the beast.

      Gary

      • December 29, 2016 at 12:09 am
      Polymath
      Participant

      Hi Paul,

      Your attitude is an inspiration to all of us in the fight.  May the new year bring you joy and satisfaction as you slay the beast.

      Gary

      • December 29, 2016 at 12:09 am
      Polymath
      Participant

      Hi Paul,

      Your attitude is an inspiration to all of us in the fight.  May the new year bring you joy and satisfaction as you slay the beast.

      Gary

      • December 29, 2016 at 4:19 pm
      cancersnewnormal
      Participant

      "Some make better vicitms than others"  😉  And I'm sure they love seeing patients regain a sense of humor and sass!  : )  Happy to hear you were able to swap from being literally full of crap to the far more pleasant figurative sense! Hope the "main event" hasn't held any unpleasant surprises!

      • December 29, 2016 at 4:19 pm
      cancersnewnormal
      Participant

      "Some make better vicitms than others"  😉  And I'm sure they love seeing patients regain a sense of humor and sass!  : )  Happy to hear you were able to swap from being literally full of crap to the far more pleasant figurative sense! Hope the "main event" hasn't held any unpleasant surprises!

      • December 29, 2016 at 4:19 pm
      cancersnewnormal
      Participant

      "Some make better vicitms than others"  😉  And I'm sure they love seeing patients regain a sense of humor and sass!  : )  Happy to hear you were able to swap from being literally full of crap to the far more pleasant figurative sense! Hope the "main event" hasn't held any unpleasant surprises!

      • December 29, 2016 at 4:23 pm
      maperny
      Participant

      Hi Paul,

      You have got this, I bet those ninja T-cells are already starting their work, hence the shivers!

      Thinking of you as you start the IL-2.  It will be over before you know it and you'll be home ready for 2017 very soon!

      maria

      • December 29, 2016 at 4:23 pm
      maperny
      Participant

      Hi Paul,

      You have got this, I bet those ninja T-cells are already starting their work, hence the shivers!

      Thinking of you as you start the IL-2.  It will be over before you know it and you'll be home ready for 2017 very soon!

      maria

      • December 29, 2016 at 4:23 pm
      maperny
      Participant

      Hi Paul,

      You have got this, I bet those ninja T-cells are already starting their work, hence the shivers!

      Thinking of you as you start the IL-2.  It will be over before you know it and you'll be home ready for 2017 very soon!

      maria

      • December 29, 2016 at 7:16 pm
      Scooby123
      Participant

      Glad you feeling much better and good luck with treatment . Keep cracking them jokes.

      scooby

      • December 29, 2016 at 7:16 pm
      Scooby123
      Participant

      Glad you feeling much better and good luck with treatment . Keep cracking them jokes.

      scooby

      • December 29, 2016 at 7:16 pm
      Scooby123
      Participant

      Glad you feeling much better and good luck with treatment . Keep cracking them jokes.

      scooby

      • December 30, 2016 at 1:33 am
      Bubbles
      Participant

      Sounds like you are rock'in it out, Paulster!!!  I know you have been utterly miserable…but the strength of your spirit remains as bright and joyful as ever.  Hang tough, dear friend!!! love, c

      • December 30, 2016 at 1:33 am
      Bubbles
      Participant

      Sounds like you are rock'in it out, Paulster!!!  I know you have been utterly miserable…but the strength of your spirit remains as bright and joyful as ever.  Hang tough, dear friend!!! love, c

      • December 30, 2016 at 1:33 am
      Bubbles
      Participant

      Sounds like you are rock'in it out, Paulster!!!  I know you have been utterly miserable…but the strength of your spirit remains as bright and joyful as ever.  Hang tough, dear friend!!! love, c

Viewing 23 reply threads
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