The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

OK round one of interleukin2

Forums General Melanoma Community OK round one of interleukin2

  • Post
    carol b
    Participant

      Well i received 9 doses of IL2. The goal was 14, but we had to skip dose 7 because of my blood pressure and i got 2 more after that and then they decided i had enough. My heart rate finally got stabilized a day and a half later. I was delusional, Had hallucinations which continued 3 days after i got home.OH YEAH little fairies turned into beautiful butterflies .I only had 1 bad hallucinations and i was in the shower and thought i was bleeding out of my feet. The itching is terrible. The pain was tolerable with oxycodon plus a few i cant remember.

      Well i received 9 doses of IL2. The goal was 14, but we had to skip dose 7 because of my blood pressure and i got 2 more after that and then they decided i had enough. My heart rate finally got stabilized a day and a half later. I was delusional, Had hallucinations which continued 3 days after i got home.OH YEAH little fairies turned into beautiful butterflies .I only had 1 bad hallucinations and i was in the shower and thought i was bleeding out of my feet. The itching is terrible. The pain was tolerable with oxycodon plus a few i cant remember. Usually got sick at my stomach about 3 hours after each treatment.. I had absolutely no appetite. Your taste buds go on vacation, mouth sores take there place. I am to return March 1 to start all over again and im not healed from the first round. So im a little scared .Actually im terrified.surprise I don't know if its doing any good but my husband says he thinks its shrank a little. I tell him to stay positive honey,,,lol…All i know is it makes my tumor hurt like hell. I have edema in my right arm because the PICC line was in my left arm and tumor under my right arm. The started taking my blood pressure in my leg but when it started dropping they wanted to make sure it was accurate so they took it in my arm and thats what causes the edema. Personally i don't feel like i have had enough time to heal before its time to go back but i guess they know what they are doing. Well thats all the info for now.. Peace to all and prayers for each of you..

      Carol Bellinger

      Metastatic Melanoma

      Stage 4

    Viewing 7 reply threads
    • Replies
        Cate
        Participant

          Congrats on making it through your first round.  I know it isn't easy but hang in there and I'll keep my fingers crossed that you are a responder:)

          Cate
          Participant

            Congrats on making it through your first round.  I know it isn't easy but hang in there and I'll keep my fingers crossed that you are a responder:)

            MichaelFL
            Participant

              Hi Carol,

              I just wanted to give you some support in this matter and wish you the best. I am not sure if you are aware, but Jane (from Maine) is the Resident IL-2 expert at MRF. Here is her website, and she speaks from experience.

              http://www.operationsunshield.org/tipsheet.html

              There is also much good reading elsewhere on her site so you may want to "surf" it a little.

              There are others here that may be able to assist you with dealing with IL-2 as well. Jerry from Fauq comes to mind off hand. Maybe others will see your post soon and chime in.

              Good luck, and keep on truckin!

              Michael

              MichaelFL
              Participant

                Hi Carol,

                I just wanted to give you some support in this matter and wish you the best. I am not sure if you are aware, but Jane (from Maine) is the Resident IL-2 expert at MRF. Here is her website, and she speaks from experience.

                http://www.operationsunshield.org/tipsheet.html

                There is also much good reading elsewhere on her site so you may want to "surf" it a little.

                There are others here that may be able to assist you with dealing with IL-2 as well. Jerry from Fauq comes to mind off hand. Maybe others will see your post soon and chime in.

                Good luck, and keep on truckin!

                Michael

                Fen
                Participant

                  Give 'em h#ll, Carol!  You did well and I'm praying like h#ll for you!

                    carol b
                    Participant

                      good morning honey,

                      i just want to remind yoy how proud i am of you still, i saw what this cancer is doing to you from the start till the present. and i have stuck by your side threw it all and i will be there till its gone. i see how much its changed you and i see how strong you are becoming again.. we will get threw this. i;m so sorry you have to go threw this, but i will be by your side threw it all. if i could take this cancer from you i would,

                      you are my life, my love, my insperation for life.please donlt ever give up. maybe i;m selfish , but i need you.I Love You more than life itself. we have been threw hell and i know some day we will be in heaven. i just pray its no time real soon. so please try your hardest to continue with these treatments even if its just a few more, if you cant take them any more i;ll understand. maybe they can try this new drug (E7080 EISA) thats coming on the market. you heard DR PUZANOV  talk about it with great inthusisum. we put this in GODS loving hands and he will never give you more than you can handle.  just remember that i am here for you honey and allways will be,

                                                                I LOVE YOU CAROL BELLINGER,

                                                  MY HEART IS WITH YOU ……………..YOUR HUSBAND AND FRIEND (RICK)

                      Vermont_Donna
                      Participant

                        Wow Carol, what a great husband! Such a loving note to you!!!! I am glad you made it through round one relatively ok. They are not taking your blood pressure in the PICC line arm right?? I can see why in the right arm would bother you….they can take it on your forearm also, not the upper arm.

                        Good luck on round 2 and now you know what to expect. I hope you are not alone throughout all of this.

                        Warm cyber hugs,

                        Vermont_Donna, stage 3a

                        stable after 4 infusions of Ipi

                        KellieSue
                        Participant

                          Wow, what a great husband you have! I'm glad you have someone to help you through all this crap!

                          Congrats on making it through a round of IL-2. I only made it to 8 bags and it took me 3 weeks to recover at home on oxygen. I never finished the round.

                          Good luck and I hope you kick cancers butt!

                          Kellie(from Iowa) Stage IV B-RAF now

                          KellieSue
                          Participant

                            Wow, what a great husband you have! I'm glad you have someone to help you through all this crap!

                            Congrats on making it through a round of IL-2. I only made it to 8 bags and it took me 3 weeks to recover at home on oxygen. I never finished the round.

                            Good luck and I hope you kick cancers butt!

                            Kellie(from Iowa) Stage IV B-RAF now

                            Vermont_Donna
                            Participant

                              Wow Carol, what a great husband! Such a loving note to you!!!! I am glad you made it through round one relatively ok. They are not taking your blood pressure in the PICC line arm right?? I can see why in the right arm would bother you….they can take it on your forearm also, not the upper arm.

                              Good luck on round 2 and now you know what to expect. I hope you are not alone throughout all of this.

                              Warm cyber hugs,

                              Vermont_Donna, stage 3a

                              stable after 4 infusions of Ipi

                              carol b
                              Participant

                                good morning honey,

                                i just want to remind yoy how proud i am of you still, i saw what this cancer is doing to you from the start till the present. and i have stuck by your side threw it all and i will be there till its gone. i see how much its changed you and i see how strong you are becoming again.. we will get threw this. i;m so sorry you have to go threw this, but i will be by your side threw it all. if i could take this cancer from you i would,

                                you are my life, my love, my insperation for life.please donlt ever give up. maybe i;m selfish , but i need you.I Love You more than life itself. we have been threw hell and i know some day we will be in heaven. i just pray its no time real soon. so please try your hardest to continue with these treatments even if its just a few more, if you cant take them any more i;ll understand. maybe they can try this new drug (E7080 EISA) thats coming on the market. you heard DR PUZANOV  talk about it with great inthusisum. we put this in GODS loving hands and he will never give you more than you can handle.  just remember that i am here for you honey and allways will be,

                                                                          I LOVE YOU CAROL BELLINGER,

                                                            MY HEART IS WITH YOU ……………..YOUR HUSBAND AND FRIEND (RICK)

                              Fen
                              Participant

                                Give 'em h#ll, Carol!  You did well and I'm praying like h#ll for you!

                                carol b
                                Participant

                                  Thanks for all of yalls replys……I do round 2 Monday, im hating the thought of it..I would like to know how long it takes to know if the IL2 is working. According to my arm pit its doing nothing but growing. I dont understand doing this if its not going to work. Life after IL2 is no life for me. Some may take it very well but for me it was horrible. My tumor is not shrinking. If it doesnt shrink soon its gonna bust right out of my skin. i just dunno what to docrying

                                  carol b
                                  Participant

                                    Thanks for all of yalls replys……I do round 2 Monday, im hating the thought of it..I would like to know how long it takes to know if the IL2 is working. According to my arm pit its doing nothing but growing. I dont understand doing this if its not going to work. Life after IL2 is no life for me. Some may take it very well but for me it was horrible. My tumor is not shrinking. If it doesnt shrink soon its gonna bust right out of my skin. i just dunno what to docrying

                                Viewing 7 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 by MRF posting policies.