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Phil S Joins the Roll Call Club

Forums Mucosal Melanoma Community Phil S Joins the Roll Call Club

  • Post
    Phil S
    Participant

      While, the month of July proved to be challenging, when Phil's "routine" Pet/Cat and MRI scans at Dana Farber showed a lung nodule that turned out to be melanoma.  Just a quick recap, Phil's case is somewhat unique (mucosal, rectum) melanoma, and he had initial surgery in Feb 2010, then one year of interferon.  He did great on interferon, and we really felt it kept his aggressive melanoma (mucosal, deep primary, very high mitotic rate) at bay for the eighteen months he stayed at stage 3.  Others can disagree, and we will never know for sure, but two months a

      While, the month of July proved to be challenging, when Phil's "routine" Pet/Cat and MRI scans at Dana Farber showed a lung nodule that turned out to be melanoma.  Just a quick recap, Phil's case is somewhat unique (mucosal, rectum) melanoma, and he had initial surgery in Feb 2010, then one year of interferon.  He did great on interferon, and we really felt it kept his aggressive melanoma (mucosal, deep primary, very high mitotic rate) at bay for the eighteen months he stayed at stage 3.  Others can disagree, and we will never know for sure, but two months after completing his year of interferon, the lung tumor was found.  Since, he was clean on all scans except for that one lung nodule, he had his right middle lobe removed on July 14th, and they got all the tumor and clean margins, no lymph node involvement. 

      Phil is also Braf,C-kit, and HLA 02 negative, so future options are limited.  Stage IV NED, also limits clinical trial involvement, but we aren't complaining, thankful that surgery was an option.  We pushed for Leukine, and he is starting on Monday, praying that this drug can keep him stable for awhile.  We frequent this bulletin daily and get wonderful information and hope from all the people who share their experiences on this Board, especially Jerry (another stage IV mucosal melanoma case) who battles on, despite last year's fight with a horse.  Jerry is a true inspiration to us. 

      We grieve with all those who have lost love ones to this disease.  We understand how everyone can and does feel sad, angry, scared, frustrated, disappointed, and hopeless when melanoma once again takes a front seat in their lives.  We truly emphasize with all the familes with young children (our kids are six and eight years old) and how fighting melanoma takes away part of their childhood, or at least part of the summer.  But, one thing I have learned in the past 18 months, is that people are resilient even children, and on a personal note, our kids are doing really well.  Phil is plugging along, lung surgery was fairly easy for him, and he is ready for the next step, hoping leukine boosts his immune system.  And, I have rallied too, after some dark moments especially at night, to again help my husband begin another battle with the beast.  Take Care!  Valerie (Phil's wife)

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    • Replies
        Teodora
        Guest

          Hi Valerie,

          I am sorry to hear about Phil's progression but I am sure he will fight this and be as successful  as Jerry .I am paying special attention to all "mucosal" postings as I obviously relate to this as being one myself.

          Did Dana Farber recommend Interferon?We met Dr.Hodi on July 20th and I made it clear I will not do this treatment as I do not think it is suitable for me and he said he does not recommend it either in my case.I am doing instead a breaky procedure/local vaginal radiation/ for my recurrence.

          I am glad that Phil did well  with the surgery and I hope he feels well ,recovered and  in good spirits.

          My best wishes to you and Phill.

          Teodora

           

          Teodora
          Guest

            Hi Valerie,

            I am sorry to hear about Phil's progression but I am sure he will fight this and be as successful  as Jerry .I am paying special attention to all "mucosal" postings as I obviously relate to this as being one myself.

            Did Dana Farber recommend Interferon?We met Dr.Hodi on July 20th and I made it clear I will not do this treatment as I do not think it is suitable for me and he said he does not recommend it either in my case.I am doing instead a breaky procedure/local vaginal radiation/ for my recurrence.

            I am glad that Phil did well  with the surgery and I hope he feels well ,recovered and  in good spirits.

            My best wishes to you and Phill.

            Teodora

             

              Phil S
              Participant
                Teodora, No Dana Farber did not recommend interferon, my husband and I pushed for it, as watch and wait isn’t in our personalities. Our local oncologist (we live in upstate NY, Saratoga area) prescribed and monitored the interferon. Dr Hodi, was fine with us doing interferon, as our personal decision. My husband is fairly young and other than having melanoma, he is extremely fit and healthy. Now that we are stage IV, without a lot of other options, and after reading and researching, we also advocated to start leukine. Again, Dr Hodi, said fine, he knows we have to feel like we are doing something to fight reoccurrence. The odds that it might help aren’t great, but we just hope that the odds could swing in our favor for once.

                Best of luck to you in your fight. I have kept up on your story, knowing that you also have mucosal melanoma and are going to Dana Farber. They handled everything so well for us, when they found Phil’s lung tumor, scan results the same afternoon as tests, and lung surgery a week later. We feel we are in good hands. God bless! Valerie

                Phil S
                Participant
                  Teodora, No Dana Farber did not recommend interferon, my husband and I pushed for it, as watch and wait isn’t in our personalities. Our local oncologist (we live in upstate NY, Saratoga area) prescribed and monitored the interferon. Dr Hodi, was fine with us doing interferon, as our personal decision. My husband is fairly young and other than having melanoma, he is extremely fit and healthy. Now that we are stage IV, without a lot of other options, and after reading and researching, we also advocated to start leukine. Again, Dr Hodi, said fine, he knows we have to feel like we are doing something to fight reoccurrence. The odds that it might help aren’t great, but we just hope that the odds could swing in our favor for once.

                  Best of luck to you in your fight. I have kept up on your story, knowing that you also have mucosal melanoma and are going to Dana Farber. They handled everything so well for us, when they found Phil’s lung tumor, scan results the same afternoon as tests, and lung surgery a week later. We feel we are in good hands. God bless! Valerie

                  Teodora
                  Guest

                    Valerie,

                    I see that Phil starts Leukine on August 8.Please keep us posted on how he is doing  whilst on this treatment.

                    I am glad to hear that you feel  in good hands with Dana Farber;if anybody understands mucosal that would be Dr. Hodi, I have been told.

                    Good Luck once again with Phil's treatment and let's hope it will keep  the beast at bay.

                    Teodora

                    Teodora
                    Guest

                      Valerie,

                      I see that Phil starts Leukine on August 8.Please keep us posted on how he is doing  whilst on this treatment.

                      I am glad to hear that you feel  in good hands with Dana Farber;if anybody understands mucosal that would be Dr. Hodi, I have been told.

                      Good Luck once again with Phil's treatment and let's hope it will keep  the beast at bay.

                      Teodora

                    washoegal
                    Participant

                      Valerie,

                      Thanks for the update.  Sounds like you have your head and your heart in the right place to take on the battle.  Good luck with the Leukine, I hope it does the trick and the side effects are minimum.  Keep us posted.

                      Mary

                      Stage 3

                      washoegal
                      Participant

                        Valerie,

                        Thanks for the update.  Sounds like you have your head and your heart in the right place to take on the battle.  Good luck with the Leukine, I hope it does the trick and the side effects are minimum.  Keep us posted.

                        Mary

                        Stage 3

                        Charlie S
                        Participant

                          Hi Valerie.  Has Phil been tested for the C-Kit Mutation?  A lot of times Mucosal will have that mutation, then  Gleevec can be a course of action.

                          Cheers,

                          Charlie S

                          Charlie S
                          Participant

                            Hi Valerie.  Has Phil been tested for the C-Kit Mutation?  A lot of times Mucosal will have that mutation, then  Gleevec can be a course of action.

                            Cheers,

                            Charlie S

                              Charlie S
                              Participant

                                oh, duh, nevermind, re reading your post I see he has.

                                Charlie S
                                Participant

                                  oh, duh, nevermind, re reading your post I see he has.

                                Harry in Fair Oaks
                                Participant

                                  I also was Stage IV NED after the removal of a lung nodule.  That was in 2000.  I then did a 36 cycle clinical trial of leukine (that's almost 3 years).  I tolerated it well – a bit of a hassle giving myself the shots, but almost no side-effects after the first 2 cycles.

                                  The MM did return earlier this year.  But perhaps the leukine kept it at bay for the 10 years.  Buying time is what it's all about. 

                                  Best wishes,

                                  Harry

                                  Harry in Fair Oaks
                                  Participant

                                    I also was Stage IV NED after the removal of a lung nodule.  That was in 2000.  I then did a 36 cycle clinical trial of leukine (that's almost 3 years).  I tolerated it well – a bit of a hassle giving myself the shots, but almost no side-effects after the first 2 cycles.

                                    The MM did return earlier this year.  But perhaps the leukine kept it at bay for the 10 years.  Buying time is what it's all about. 

                                    Best wishes,

                                    Harry

                                    shellebrownies
                                    Participant

                                      Valerie,

                                      So sorry to hear that Phil had some new activity, but glad that they were able to get it out. I will of course pray that he remains stable and NED for a long time to come! : )

                                      Michelle, wife of Don

                                      shellebrownies
                                      Participant

                                        Valerie,

                                        So sorry to hear that Phil had some new activity, but glad that they were able to get it out. I will of course pray that he remains stable and NED for a long time to come! : )

                                        Michelle, wife of Don

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