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Question:

Forums General Melanoma Community Question:

  • Post
    himynameiskevin
    Participant

      I was just told I have a met to brain as well has my lungs and liver. They swithched the plan of attack to radiation for three days on my brain. Followed by Interleukin 2 in about a week. I'm worried and seeking answers, to feel hopeful. So my question is, has Interleukin 2 ever worked? For anyone? Any success stories you may have heard of?

      I was just told I have a met to brain as well has my lungs and liver. They swithched the plan of attack to radiation for three days on my brain. Followed by Interleukin 2 in about a week. I'm worried and seeking answers, to feel hopeful. So my question is, has Interleukin 2 ever worked? For anyone? Any success stories you may have heard of?

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    • Replies
        Fen
        Participant

           

          What kind of radiation?  Cyberknife?  From what I've read on the board, it is best to zap the tumor only initially rather than do whole brain radiation (WBR). 

          IL-2 sounds like a good choice.  Are you comfortable with your doctors now?

           

          Keep us posted

          Fen

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            Fen
            Participant

               

              Forgot to add that there are success stories with IL-2,  If you can do a search for posts by JanefromMaine you will find them.  Also – her website is operationsunsheild.  You could google that.

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              himynameiskevin
              Participant

                it's stereotactic radiation. i start today. little nervous. i'm mosty concerned about the IL-2 which probably starts in 1 week. I do like the doctor I am seeing now. He makes me feel pretty optomistic. If i could just get rid of these inner demons. Thank you everyone for the feedback. I'll keep you updated.

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                himynameiskevin
                Participant

                  it's stereotactic radiation. i start today. little nervous. i'm mosty concerned about the IL-2 which probably starts in 1 week. I do like the doctor I am seeing now. He makes me feel pretty optomistic. If i could just get rid of these inner demons. Thank you everyone for the feedback. I'll keep you updated.

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                Rebecca and Bob
                Participant

                  Hi Kevin,

                   

                  Sorry your joining our group, but what a great group of people. I think your plan is good. You wanted to hear from IL-2 folks. My husband did IL-2 in April 2008 lung mets. He responded and did 6 rounds of it. He appeared to be a complete responder but then small intestinal mets appeared a year later. Those were surgically removed. He had scans last week and is now 13 months disease free. There are also new articles about IL-2 working on brain mets. My husband has been a Stage IV melanoma survivor since April 2008. He was originally Stage III January of 2007.

                  Good luck on your treatment and I will send good thoughts and prayers your way. IL-2 is tough but there are some mighty tough women on this board who made it through and you are young, you can do it. My husband was 41 when he did IL-2. I hope to keep him around for a very long time.

                  Rebecca

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                    Sharon in Reno
                    Participant

                      This is  always a hard choice to make…which treatment to do & when to do it. My docotor always tells me "brain first, then body". I am 53 and have been in full ballte gear for over a yr now. Just found out I had a brain tumor on June 21 and by July 01 I was having brain surgery, then 2 wks later did 3 saps of the Cyberknife/SRS, then weened off of  steroids. Now onto the body. I had a lump under letft arm, then last wk's CT scan found 2 small lesions on left side of back kinda close to other lump by #4 half of rib (that I lost in lung surgery)…so…surgery set for Aug.31….so far scar count is at 27…

                      Again, IL-2 is rough but she can do it,. I always like the surgery first then go from there, cut those suckers out. She can do it!!!, Love, Sharon in Reno Stage IV

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                    Kim K
                    Participant

                      I am a complete responder to IL-2.  Yes, you do get sick but they have drugs for all that and you wind up sleeping through most.  Jane from Main has the IL-2 tip sheet which I used and added to.  It is doable and when you are finished, you rapidly recover and it is over with.  You respond or don't.  If you partially respond they give you enough of a break to actually consider doing it again = lol.

                      I did 13 and then 10 bags for a total of 23.  It works best with minimal mets, so once your brain is clear, it is worth it.  If you fall in the 6% club who have a complete response, the chances of you being here for 5 years are terriffic.  In addition, 60% of that 6% are still setting the survival curve ex 20 yrs. plus!  Nothing to this date compares to that long term.  If you are healthy enough to try it, go for it.  At least you will find out pretty quickly if it works for your or not.

                      Best of luck, sounds like a good game plan,

                      Kim K – NED with IL-2 stage IV, 2 mos.

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                        Kim K
                        Participant

                          Mane or however you spell that state….. lol.  Enjoying my wine :P

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                        killmel
                        Participant

                          Hi Kevin,

                          So sorry to hear the news aboout your brain met…………that is so hard to take.

                          How was your visit with Dr. Daniels. Are you under his care for brain radiation & IL2.????

                          Did he offer you any clinical trials???

                          Hope everthing goes well for you.

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                            himynameiskevin
                            Participant

                              Dr. Daniels is really nice and caring. I'm glad to be seeing him. I will be under his care for the IL-2, no other clinical trials yet. As for the radiation, I'll be under Dr. Voltp. Who is just about the most informative and friendliest doctor I've encountered. For the first time in exactly one month, I left the hospital feeling better on the way out. Great guy.

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                              himynameiskevin
                              Participant

                                Dr. Daniels is really nice and caring. I'm glad to be seeing him. I will be under his care for the IL-2, no other clinical trials yet. As for the radiation, I'll be under Dr. Voltp. Who is just about the most informative and friendliest doctor I've encountered. For the first time in exactly one month, I left the hospital feeling better on the way out. Great guy.

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                              killmel
                              Participant

                                Hi Kevin,

                                So sorry to hear the news aboout your brain met…………that is so hard to take.

                                How was your visit with Dr. Daniels. Are you under his care for brain radiation & IL2.????

                                Did he offer you any clinical trials???

                                Hope everthing goes well for you.

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                                KatyWI
                                Participant

                                  Kevin,

                                  I'm another IL-2 veteran, chiming in with encouragement.  It does work for some people.  I was a partial responder – it zapped all the non-operable tumors and left me with one, tidy, neat subQ to surgically clean up, and I've been NED for four months.  Rough side effects, but I've already forgotten most of the bad parts.  IL-2 is definitely worth trying.

                                  KatyWI

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                                  KatyWI
                                  Participant

                                    Kevin,

                                    I'm another IL-2 veteran, chiming in with encouragement.  It does work for some people.  I was a partial responder – it zapped all the non-operable tumors and left me with one, tidy, neat subQ to surgically clean up, and I've been NED for four months.  Rough side effects, but I've already forgotten most of the bad parts.  IL-2 is definitely worth trying.

                                    KatyWI

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                                    killmel
                                    Participant

                                      Hi Kevin,

                                       

                                      You are young & I know you will do well.

                                      I have never heard of stereotactic radiation. Is that gamma knife????

                                      Do you have to wear a halo screwed into your heard or are you having a mask made for the procedure???

                                      I appreciate the answers to my questions because I am always trying to learn what is available & new technology.

                                      Best of  luck 

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                                        himynameiskevin
                                        Participant

                                          You know, I didn't hear gamma or cyber knife at all. I'm not sure if it's much different, if it's different at all. Whatever they're doing, they seem very optimistic. Say it shouldn't be a problem at all. I will be having a mask made on wednesday. Thank you for the postive thoughts.

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                                          killmel
                                          Participant

                                            Kevin, thanks for info..please keep us posted how your treatment/radiation goes. We are care & support you.

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                                            killmel
                                            Participant

                                              Kevin, thanks for info..please keep us posted how your treatment/radiation goes. We are care & support you.

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                                              himynameiskevin
                                              Participant

                                                You know, I didn't hear gamma or cyber knife at all. I'm not sure if it's much different, if it's different at all. Whatever they're doing, they seem very optimistic. Say it shouldn't be a problem at all. I will be having a mask made on wednesday. Thank you for the postive thoughts.

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                                              killmel
                                              Participant

                                                Hi Kevin,

                                                 

                                                You are young & I know you will do well.

                                                I have never heard of stereotactic radiation. Is that gamma knife????

                                                Do you have to wear a halo screwed into your heard or are you having a mask made for the procedure???

                                                I appreciate the answers to my questions because I am always trying to learn what is available & new technology.

                                                Best of  luck 

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