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IL2 update

Forums Caregiver Community IL2 update

  • Post
    carol b
    Participant

      I got a wonderful response from the IL2. The first week I could only do 9 bags of the drug. The 5 days i had to recover were not enough. i went back n got another 6 bags. Its all my body could handle. My heart rate bottomed out both times. But my Doc says i done good. He had only hoped I would get at least half of the 28 bags that ya need to fully get the effect of IL2. I got 15 bags so he was happy. To me it was horrible but totally worth it. My 3 tumors in my neck have disappeared. Well they aren't budging out anymore. The huge one under my arm is about half its size now.

      I got a wonderful response from the IL2. The first week I could only do 9 bags of the drug. The 5 days i had to recover were not enough. i went back n got another 6 bags. Its all my body could handle. My heart rate bottomed out both times. But my Doc says i done good. He had only hoped I would get at least half of the 28 bags that ya need to fully get the effect of IL2. I got 15 bags so he was happy. To me it was horrible but totally worth it. My 3 tumors in my neck have disappeared. Well they aren't budging out anymore. The huge one under my arm is about half its size now. Maybe 2 inches wide compared to around 6 inches. We are excited about IL2 working. Doc says im not out of the woods yet but at least it is working. He says my on immune system has kicked in and i should be seeing the tumors shrink even more as the days pass. As far as being back to self after 2 weeks, it didn't happen for me. Im into my fourth week at home and just now feeling some sort of normal. I was extremely weak when i got home and couldn't eat because of nausea, even though i had meds for that. Everything liquid tasted like tinfoil. I realize now i should have listened to you guys on here when you said DRINK water water water.. ….. I took most of every ones advice with me to the hospital.. I Thank God for you all. Even with all the love and support i had with my family and my caregivers{ husband and sister} I would not have gotten thru the IL2 without your words of wisdom and the strength that you all have and for that I Thank You All. Words cant express how much I feel for you. One bit of advice to a caregiver out there, force liquid at all times even if its just a sip. Being dehydrated and the IL2 is not a good combination and no the IV is not enough. And one more thing, if ya see the patient acting weird or saying wired thing or are seeing things notify someone immediately…It can become permanent if not acted upon. Luckily for me my hallucinations were pink fairies and butterflies it could have been the exact oppistie.They continued for about 2 days after i got home and slowly started fading away. I get a PET scan in May and hopefully it hasnt spread anywhere else. I do another round of IL2 the end of May and im scared to death to do it but i will. I have a wonderful team that takes care of me. I can only say good things about Vanderbilt and its employs. Well thats my update. And once again Thank you all. My prayers are with you all that whatever treatment you get or are getting works and gives you back the HOPE that we seem to lose with this terrible disease.

      Carol b

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    • Replies
        Vermont_Donna
        Participant

          Dear Carol,

          I am so happy for you…..you did really GREAT!!!! You have some really good information here for people too. I am wishing you clear scans in May and that you are NED forever!

          Hugs from snowy and cold Vermont,

          Vermont_Donna, stage 3a

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            carol b
            Participant

              Thank you so much the wonderful wish. I could not have made it without finding friends here on yhis board..I pray all is well with you. Thank you again so much for careing.

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              carol b
              Participant

                Thank you so much the wonderful wish. I could not have made it without finding friends here on yhis board..I pray all is well with you. Thank you again so much for careing.

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              Vermont_Donna
              Participant

                Dear Carol,

                I am so happy for you…..you did really GREAT!!!! You have some really good information here for people too. I am wishing you clear scans in May and that you are NED forever!

                Hugs from snowy and cold Vermont,

                Vermont_Donna, stage 3a

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                lhaley
                Participant

                  Carol,

                  Sounds like your having a terrific response, especially since you've only had it for the first round.  I can imagine how horrible you've been feeling but to see such a response should help you through the next round!

                  So so happy for you, thanks for the great advice for others,

                  Linda

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                  lhaley
                  Participant

                    Carol,

                    Sounds like your having a terrific response, especially since you've only had it for the first round.  I can imagine how horrible you've been feeling but to see such a response should help you through the next round!

                    So so happy for you, thanks for the great advice for others,

                    Linda

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                    ValinMtl
                    Participant

                      Congratulations on getting through 15 bags!!  I am sure it wasn't easy but you trooped on.  Sounds like you are responding very well, your words of advice will be duly noted here.  Take care and make you have good results in May.  Val Stage IV

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                      ValinMtl
                      Participant

                        Congratulations on getting through 15 bags!!  I am sure it wasn't easy but you trooped on.  Sounds like you are responding very well, your words of advice will be duly noted here.  Take care and make you have good results in May.  Val Stage IV

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                        Fen
                        Participant

                          Absolutely wonderful news!! I got goosebumps.  Get back in there in May and kick a**.

                          Fen

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                          Fen
                          Participant

                            Absolutely wonderful news!! I got goosebumps.  Get back in there in May and kick a**.

                            Fen

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                            Gwen in Maine
                            Participant

                              So happy for you!

                              Gwen in Maine, 3C

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                              Gwen in Maine
                              Participant

                                So happy for you!

                                Gwen in Maine, 3C

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                                alicia
                                Participant
                                  Your such a trooper!!!!! So happy to hear you are responding that is great news. My family will continue to pray for you and cheering for more great news. Happy thoughts and warm wishes. And that’s great you had pretty things in your hallucinations lol:). God bless

                                  Alicia B stage3a w/ 3 primaries

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                                  alicia
                                  Participant
                                    Your such a trooper!!!!! So happy to hear you are responding that is great news. My family will continue to pray for you and cheering for more great news. Happy thoughts and warm wishes. And that’s great you had pretty things in your hallucinations lol:). God bless

                                    Alicia B stage3a w/ 3 primaries

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                                    Rick from NC
                                    Participant

                                      Carol, it's so nice to hear about your great initial response!  I also had lots of side effects, including a vivid visual hallucination.  Don't worry too much if you can't handle a lot of doses.   I recall that in one of my rounds of IL-2, I had 11 doses in the first cycle, but then could only manage 4 in the 2nd cycle!  Yet, I had a complete response after 3 rounds.  That was in 1992, and I'm still NED 19 years later.  Hang in there!

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                                      Rick from NC
                                      Participant

                                        Carol, it's so nice to hear about your great initial response!  I also had lots of side effects, including a vivid visual hallucination.  Don't worry too much if you can't handle a lot of doses.   I recall that in one of my rounds of IL-2, I had 11 doses in the first cycle, but then could only manage 4 in the 2nd cycle!  Yet, I had a complete response after 3 rounds.  That was in 1992, and I'm still NED 19 years later.  Hang in there!

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                                        chet
                                        Participant

                                          I'm happy that you're responding to IL-2! Be positive, you can do it.

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                                          chet
                                          Participant

                                            I'm happy that you're responding to IL-2! Be positive, you can do it.

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