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IL-2, round 2 tomorrow- concerns
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IL-2, round 2 tomorrow- concerns

› Forums › General Melanoma Community › IL-2, round 2 tomorrow- concerns

  • Post
    • November 13, 2011 at 7:15 pm
    NYKaren
    Participant

      Hi everyone,

      Well, here we go again, back to Yale/New Haven tomorrow.  Had IL-2 in September (in hosp. one week, one week home to recover, repeat).

      They only repeat the regimen if scans show stable or improved.  Mine seem to show improved, so I'm off again.

      Hi everyone,

      Well, here we go again, back to Yale/New Haven tomorrow.  Had IL-2 in September (in hosp. one week, one week home to recover, repeat).

      They only repeat the regimen if scans show stable or improved.  Mine seem to show improved, so I'm off again.

      I'm quite concerned because although my insides seem ok for now, and nothing's lighting up on the PET, I've been noticing a few tiny new satilites on my face.  in one area, there are 3 or 4 tiny black dots, never had that before.  They weren't even there when I saw Dr. Wolchuk 2 weeks ago.  I re-read all my reports that I could get my hands on, and on the first biopsy after the recurrence, it specifically says that the mel had traveled into the local lymphatic system.  We all have a lymphatic system right below our skin.  Ironically, the very act of excisional surgery seems to have "spilled" melanoma cells into that system.  

      I keep applying Aldera and praying that this round will kill anything remaining…but there's always that worry that this really isn't it.  And it's so worrisome because there's one in my ear now…what happens if they go inside my ear where I can't see them?  All questions for Dr. Sznol tomorrow.

      So I'm very happy to go and be knocked on my ass again, and I'm anxious about  going and getting knocked on my ass again!  All natural feelings, I'm sure, just a little unerving.  

      I hope to post from the hosital–off now to buy banannas and a case of water.

      Karen

    Viewing 17 reply threads
    • Replies
        • November 14, 2011 at 1:09 am
        Fen
        Participant

          I don't have an answer to your questions, Karen, but am sending prayers and positive thoughts for your stay in the hospital.  May it go as well as possible and knock the dickens out of any little rotten melanoma cells.

          post if you feel like it.  

          Fen

          • November 14, 2011 at 1:09 am
          Fen
          Participant

            I don't have an answer to your questions, Karen, but am sending prayers and positive thoughts for your stay in the hospital.  May it go as well as possible and knock the dickens out of any little rotten melanoma cells.

            post if you feel like it.  

            Fen

            • November 14, 2011 at 1:09 am
            Fen
            Participant

              I don't have an answer to your questions, Karen, but am sending prayers and positive thoughts for your stay in the hospital.  May it go as well as possible and knock the dickens out of any little rotten melanoma cells.

              post if you feel like it.  

              Fen

              • November 14, 2011 at 1:30 am
              Rick from NC
              Participant

                Karen,

                Even though I had a complete response to IL-2, I still had some activity of lesions under my skin during treatment.  I can recall a tumor that I could feel on the front of my hip that grew smaller and smaller in the 2-3 weeks after my 3rd round until it disappeared completely.  That was so amazing, and exciting as well!

                So don't worry too much about activity of lesions at this point.  You may see more positive effects later.

                Best wishes for your 2nd round.

                Rick

                  • November 14, 2011 at 1:43 am
                  NYKaren
                  Participant

                    Thanks, Fen, and Rick, you truly make my day!

                    be well,

                    karen

                    • November 14, 2011 at 1:43 am
                    NYKaren
                    Participant

                      Thanks, Fen, and Rick, you truly make my day!

                      be well,

                      karen

                      • November 14, 2011 at 1:43 am
                      NYKaren
                      Participant

                        Thanks, Fen, and Rick, you truly make my day!

                        be well,

                        karen

                      • November 14, 2011 at 1:30 am
                      Rick from NC
                      Participant

                        Karen,

                        Even though I had a complete response to IL-2, I still had some activity of lesions under my skin during treatment.  I can recall a tumor that I could feel on the front of my hip that grew smaller and smaller in the 2-3 weeks after my 3rd round until it disappeared completely.  That was so amazing, and exciting as well!

                        So don't worry too much about activity of lesions at this point.  You may see more positive effects later.

                        Best wishes for your 2nd round.

                        Rick

                        • November 14, 2011 at 1:30 am
                        Rick from NC
                        Participant

                          Karen,

                          Even though I had a complete response to IL-2, I still had some activity of lesions under my skin during treatment.  I can recall a tumor that I could feel on the front of my hip that grew smaller and smaller in the 2-3 weeks after my 3rd round until it disappeared completely.  That was so amazing, and exciting as well!

                          So don't worry too much about activity of lesions at this point.  You may see more positive effects later.

                          Best wishes for your 2nd round.

                          Rick

                          • November 14, 2011 at 2:37 am
                          King
                          Participant

                            Hi Karen,

                            I don't have answers to your questions but wanted to wish you luck and let you know that you'll be in my thoughts.  I've never done IL-2 but know several people that have and we all seem to agree…..it's not easy but so worth it if you are a responder.

                             

                            One day at a time.

                             

                            Stay Strong

                            King

                            Stage IV  7/05  Liver mets

                            • November 14, 2011 at 2:37 am
                            King
                            Participant

                              Hi Karen,

                              I don't have answers to your questions but wanted to wish you luck and let you know that you'll be in my thoughts.  I've never done IL-2 but know several people that have and we all seem to agree…..it's not easy but so worth it if you are a responder.

                               

                              One day at a time.

                               

                              Stay Strong

                              King

                              Stage IV  7/05  Liver mets

                              • November 14, 2011 at 2:37 am
                              King
                              Participant

                                Hi Karen,

                                I don't have answers to your questions but wanted to wish you luck and let you know that you'll be in my thoughts.  I've never done IL-2 but know several people that have and we all seem to agree…..it's not easy but so worth it if you are a responder.

                                 

                                One day at a time.

                                 

                                Stay Strong

                                King

                                Stage IV  7/05  Liver mets

                                • November 14, 2011 at 3:31 am
                                cwu
                                Participant

                                  Hi Karen,

                                  I will be thinking about you and hope you have good results once you are done. Take care and please keep us updated when you can next week.

                                  Cha

                                  • November 14, 2011 at 3:31 am
                                  cwu
                                  Participant

                                    Hi Karen,

                                    I will be thinking about you and hope you have good results once you are done. Take care and please keep us updated when you can next week.

                                    Cha

                                    • November 14, 2011 at 3:31 am
                                    cwu
                                    Participant

                                      Hi Karen,

                                      I will be thinking about you and hope you have good results once you are done. Take care and please keep us updated when you can next week.

                                      Cha

                                      • November 14, 2011 at 1:58 pm
                                      Gene_S
                                      Participant

                                        I also don't have any ideas but am wishing you much success and will be keeping you in my prayers.

                                        Judy (loving wife and  caregiver of Gene Stage IV since 2010)

                                        • November 14, 2011 at 1:58 pm
                                        Gene_S
                                        Participant

                                          I also don't have any ideas but am wishing you much success and will be keeping you in my prayers.

                                          Judy (loving wife and  caregiver of Gene Stage IV since 2010)

                                          • November 14, 2011 at 1:58 pm
                                          Gene_S
                                          Participant

                                            I also don't have any ideas but am wishing you much success and will be keeping you in my prayers.

                                            Judy (loving wife and  caregiver of Gene Stage IV since 2010)

                                            • November 15, 2011 at 1:35 am
                                            carol b
                                            Participant

                                              hey,,, i should have posted the last time you were on here. As for that i can only say im sorry.. As for finding little cancer spots well i had them. As a matter of fact i had 6 of them. they just got all dried up and itchy and i just scratched them off. I completed 3 rounds of high dose IL2. I could only do 14 bags per round. I am a partial responder. I had to have surgery to get out 3 large tumers out from under my arm but the 6 in my neck went completley away. I have stable leasions on both lungs and 1 on the liver but all were stable 3 months ago, I get new scans the 22 so hopefully the IL2 did what it was suppose to and got rid of them to. As for your second round, good luck, i will be praying for you. I found the second round to be rather easy. guess it wasnt as scary and knew what to expect. My third round didnt go so well,, it was damaging my heart. i actually had to be ruched to CCU because my blood pressure dropped to 40/30. So they stopped IL2 after that but i was on my 14th bag so i did it, Thank God he watches out for stubborn dummies.. Keep an eye on blood pressure and drink lots and lots and lots of anything,,,, And dont be afraid to ask the nurse any thing at all..ANYTHING,, well thats snough from me,, good luck and i will be praying for you,,, IL2 is a great drug

                                              • November 15, 2011 at 1:35 am
                                              carol b
                                              Participant

                                                hey,,, i should have posted the last time you were on here. As for that i can only say im sorry.. As for finding little cancer spots well i had them. As a matter of fact i had 6 of them. they just got all dried up and itchy and i just scratched them off. I completed 3 rounds of high dose IL2. I could only do 14 bags per round. I am a partial responder. I had to have surgery to get out 3 large tumers out from under my arm but the 6 in my neck went completley away. I have stable leasions on both lungs and 1 on the liver but all were stable 3 months ago, I get new scans the 22 so hopefully the IL2 did what it was suppose to and got rid of them to. As for your second round, good luck, i will be praying for you. I found the second round to be rather easy. guess it wasnt as scary and knew what to expect. My third round didnt go so well,, it was damaging my heart. i actually had to be ruched to CCU because my blood pressure dropped to 40/30. So they stopped IL2 after that but i was on my 14th bag so i did it, Thank God he watches out for stubborn dummies.. Keep an eye on blood pressure and drink lots and lots and lots of anything,,,, And dont be afraid to ask the nurse any thing at all..ANYTHING,, well thats snough from me,, good luck and i will be praying for you,,, IL2 is a great drug

                                                • November 15, 2011 at 1:35 am
                                                carol b
                                                Participant

                                                  hey,,, i should have posted the last time you were on here. As for that i can only say im sorry.. As for finding little cancer spots well i had them. As a matter of fact i had 6 of them. they just got all dried up and itchy and i just scratched them off. I completed 3 rounds of high dose IL2. I could only do 14 bags per round. I am a partial responder. I had to have surgery to get out 3 large tumers out from under my arm but the 6 in my neck went completley away. I have stable leasions on both lungs and 1 on the liver but all were stable 3 months ago, I get new scans the 22 so hopefully the IL2 did what it was suppose to and got rid of them to. As for your second round, good luck, i will be praying for you. I found the second round to be rather easy. guess it wasnt as scary and knew what to expect. My third round didnt go so well,, it was damaging my heart. i actually had to be ruched to CCU because my blood pressure dropped to 40/30. So they stopped IL2 after that but i was on my 14th bag so i did it, Thank God he watches out for stubborn dummies.. Keep an eye on blood pressure and drink lots and lots and lots of anything,,,, And dont be afraid to ask the nurse any thing at all..ANYTHING,, well thats snough from me,, good luck and i will be praying for you,,, IL2 is a great drug

                                              Viewing 17 reply threads
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