TIL – 0

Forums General Melanoma Community TIL – 0

  • Post
    _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
        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 ๐Ÿ™‚

          xo Jen

            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

              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

                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

                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 ๐Ÿ™‚

                  xo Jen

                  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 ๐Ÿ™‚

                    xo Jen

                    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

                      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

                        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

                          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!

                             

                            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!

                               

                              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!

                                 

                                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

                                  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

                                    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

                                      cancersnewnormal
                                      Participant

                                        "Some make better vicitms than others"  ๐Ÿ˜‰  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!

                                        cancersnewnormal
                                        Participant

                                          "Some make better vicitms than others"  ๐Ÿ˜‰  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!

                                          cancersnewnormal
                                          Participant

                                            "Some make better vicitms than others"  ๐Ÿ˜‰  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!

                                            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

                                              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

                                                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

                                                  Scooby123
                                                  Participant

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

                                                    scooby

                                                    Scooby123
                                                    Participant

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

                                                      scooby

                                                      Scooby123
                                                      Participant

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

                                                        scooby

                                                        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

                                                          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

                                                            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
                                                          • You must be logged in to reply to this topic.
                                                          About the MRF Patient Forum

                                                          The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                          The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide byย MRF posting policies.

                                                          Popular Topics