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Mom going through IL-2 following radiation
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Mom going through IL-2 following radiation

› Forums › Mucosal Melanoma Community › Mom going through IL-2 following radiation

  • Post
    • March 28, 2013 at 5:08 pm
    Lyssa
    Participant

      Hi, my mom (age 71)  was recently diagnosed with stage 4 mucosal melanoma.  It started in her nose, she had polyps removed and they turned out to be melanoma.  She was sent to Rush University in Chicago and was to have surgery and radiation to her face.  However, a PET scan turned up melanoma in the bones of her spine and liver.

      Hi, my mom (age 71)  was recently diagnosed with stage 4 mucosal melanoma.  It started in her nose, she had polyps removed and they turned out to be melanoma.  She was sent to Rush University in Chicago and was to have surgery and radiation to her face.  However, a PET scan turned up melanoma in the bones of her spine and liver.

      She is currently getting IL-2.  They had her do high dose radiation to the spinal bones last Friday and then started IL-2 on Monday.  Dr. Kaufman reported that recent research is finding doing that radiation before the IL-2 may dramatically increase response rates to the IL-2.  I just found out she is going to be released from the hospital tomorrow.  She got six doses of IL-2.  I guess she had a rapid heart rate, mouth sores, and was just generally very out of it so they are stopping.  They said six is an average number of doses.  I am having trouble finding information on the number of doses, does that seem about right?

      She will have two weeks off now, then go back in for another week of IL-2.  I guess after that they will wait six weeks and give her a scan, then go from there.  Here is praying that it will work!

    Viewing 8 reply threads
    • Replies
        • March 28, 2013 at 5:19 pm
        Janner
        Participant

          My understanding is that 14 doses are the maximum they give at one hospital stay.  Certainly, not everyone will get all 14 doses based on side effects.  I'm not sure I've ever seen an "average".  I've also not seen anything that says you have decreased effectiveness if you don't do all doses.  It either seems to work or not.  So if her body would only take 6, that's what you do and go from there!  I do have some patient input on how they coped with IL-2 on my website (linked below) under Patient Perspectives.  I think there are two or three detailed accounts on helpful hints if you are interested.

          Janner

          • March 28, 2013 at 5:19 pm
          Janner
          Participant

            My understanding is that 14 doses are the maximum they give at one hospital stay.  Certainly, not everyone will get all 14 doses based on side effects.  I'm not sure I've ever seen an "average".  I've also not seen anything that says you have decreased effectiveness if you don't do all doses.  It either seems to work or not.  So if her body would only take 6, that's what you do and go from there!  I do have some patient input on how they coped with IL-2 on my website (linked below) under Patient Perspectives.  I think there are two or three detailed accounts on helpful hints if you are interested.

            Janner

            • March 28, 2013 at 5:19 pm
            Janner
            Participant

              My understanding is that 14 doses are the maximum they give at one hospital stay.  Certainly, not everyone will get all 14 doses based on side effects.  I'm not sure I've ever seen an "average".  I've also not seen anything that says you have decreased effectiveness if you don't do all doses.  It either seems to work or not.  So if her body would only take 6, that's what you do and go from there!  I do have some patient input on how they coped with IL-2 on my website (linked below) under Patient Perspectives.  I think there are two or three detailed accounts on helpful hints if you are interested.

              Janner

              • March 28, 2013 at 5:49 pm
              JerryfromFauq
              Participant

                You can read about my experiences with IL-2 in my profile.  I was told by the nurses that 7 is the average number of bags usually obtained in a weeks administration.  Most people have a lower heart rate that causes us to skip bags.  Each person can be different. 

                Do they plan to do the second week of the 1st round of IL-2 administration?   I had the mouth sores and was administered solutions that help control them.

                Do a search of the BB and the archieves for my name and c-kit.  This may well be another possibility for additional treatment if the IL-2 does not produce a complete response.  The IL-2 provided a 20 month stabilization for me.  The targeted chemo, Gleevec, has provided further 4 years of stabilizatioin since the IL-2 stopped working. 

                Good luck on a complete response for you Mom.  IL-2 is rough, but provides a complete cure in 5% of general melanoma cases.

                • March 28, 2013 at 5:49 pm
                JerryfromFauq
                Participant

                  You can read about my experiences with IL-2 in my profile.  I was told by the nurses that 7 is the average number of bags usually obtained in a weeks administration.  Most people have a lower heart rate that causes us to skip bags.  Each person can be different. 

                  Do they plan to do the second week of the 1st round of IL-2 administration?   I had the mouth sores and was administered solutions that help control them.

                  Do a search of the BB and the archieves for my name and c-kit.  This may well be another possibility for additional treatment if the IL-2 does not produce a complete response.  The IL-2 provided a 20 month stabilization for me.  The targeted chemo, Gleevec, has provided further 4 years of stabilizatioin since the IL-2 stopped working. 

                  Good luck on a complete response for you Mom.  IL-2 is rough, but provides a complete cure in 5% of general melanoma cases.

                    • March 28, 2013 at 7:30 pm
                    Lyssa
                    Participant
                      She is getting two weeks off then another round of IL-2. They are testing gor thr c-kit but I don’t know the results yet.
                      • March 28, 2013 at 7:30 pm
                      Lyssa
                      Participant
                        She is getting two weeks off then another round of IL-2. They are testing gor thr c-kit but I don’t know the results yet.
                        • March 28, 2013 at 7:30 pm
                        Lyssa
                        Participant
                          She is getting two weeks off then another round of IL-2. They are testing gor thr c-kit but I don’t know the results yet.
                          • March 28, 2013 at 7:31 pm
                          Lyssa
                          Participant
                            She is getting two weeks off then another round of IL-2. They are testing gor thr c-kit but I don’t know the results yet.
                            • March 28, 2013 at 7:31 pm
                            Lyssa
                            Participant
                              She is getting two weeks off then another round of IL-2. They are testing gor thr c-kit but I don’t know the results yet.
                              • March 28, 2013 at 7:31 pm
                              Lyssa
                              Participant
                                She is getting two weeks off then another round of IL-2. They are testing gor thr c-kit but I don’t know the results yet.
                              • March 28, 2013 at 5:49 pm
                              JerryfromFauq
                              Participant

                                You can read about my experiences with IL-2 in my profile.  I was told by the nurses that 7 is the average number of bags usually obtained in a weeks administration.  Most people have a lower heart rate that causes us to skip bags.  Each person can be different. 

                                Do they plan to do the second week of the 1st round of IL-2 administration?   I had the mouth sores and was administered solutions that help control them.

                                Do a search of the BB and the archieves for my name and c-kit.  This may well be another possibility for additional treatment if the IL-2 does not produce a complete response.  The IL-2 provided a 20 month stabilization for me.  The targeted chemo, Gleevec, has provided further 4 years of stabilizatioin since the IL-2 stopped working. 

                                Good luck on a complete response for you Mom.  IL-2 is rough, but provides a complete cure in 5% of general melanoma cases.

                                • March 28, 2013 at 6:31 pm
                                kylez
                                Participant

                                  Good luck to your Mom with her treatments.

                                  When I was 45 (I'm 48 now) the number of IL-2 bags/doses I tolerated for each of 4 cycles was, in order: 10, 7, 9 and 4. 

                                  I got very good results from it, my lungs have continued scanning clear, 3 years later now. 

                                  – Kyle

                                  • March 28, 2013 at 6:31 pm
                                  kylez
                                  Participant

                                    Good luck to your Mom with her treatments.

                                    When I was 45 (I'm 48 now) the number of IL-2 bags/doses I tolerated for each of 4 cycles was, in order: 10, 7, 9 and 4. 

                                    I got very good results from it, my lungs have continued scanning clear, 3 years later now. 

                                    – Kyle

                                    • March 28, 2013 at 6:31 pm
                                    kylez
                                    Participant

                                      Good luck to your Mom with her treatments.

                                      When I was 45 (I'm 48 now) the number of IL-2 bags/doses I tolerated for each of 4 cycles was, in order: 10, 7, 9 and 4. 

                                      I got very good results from it, my lungs have continued scanning clear, 3 years later now. 

                                      – Kyle

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