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ALL LEG CUTANEOUS METS and SUB Q”S GONE WITH IPI!!!

Forums Cutaneous Melanoma Community ALL LEG CUTANEOUS METS and SUB Q”S GONE WITH IPI!!!

  • Post
    Vermont_Donna
    Participant

      Hi,

      Hi,

      I hadnt posted my good news but someone asked me to….I had 50 to 60 cutaneous and sub q mets scattered over my right leg, concentrated around my knee and a few close to my groin before I started Ipi on December 1st. My melanoma was grwoing daily, I could count new lesions, the size of a pencil eraser or a tad smaller every day and the sub q lums were purplish on the skin and underneath were painful lumpy areas the size of a quarter or bigger. I started IPI December 1st and for the next three weeks tumors were still appearing. After the second infusion, while I had some new tumors that appearing still, I noticed one of my smallest mets developed a "crust" and then within a week ir flaked off and underneath the met was almost gone. The news was too good to be true…I waited til my next infusion to show my oncologist. He was pleased but also noted the new melanomas but comforted my by saying that new lesions appearing int he first 12 weeks was "acceptable" per the protocol, meaning it didnt mean that Ipi wasnt working yet, and that the sponser Bristol Myers Squibb wasnt going to toss me out of the trial. 

      After infusion three major changes to my melanoma lesions started happening. First of all, NO NEW ONES popped up and second, my present melanomas started "reabsorbing". No other ones crusted over and flaked off like the first one. More were reabsorbing by infusion #4 and by the time I went for my PET/CT scan two weeks after my 4th infusion, ALL the melanoma tumors were ALL GONE. I showed the oncologist my leg and he was very impressed. The sub q's were still palpable but smaller and they didnt hurt. My PET/CT showed no new melanoma anywhere, it did show some moderately hypermetabolic activity in my external iliac lymph nodes (in the right nodal basin where my groin lymph dissection was done)……my doctor thought that this reflected inflammation reaction to the Ipi charging up my immune system.

      I am currently in the 12 weeks "watch and wait" part of the clinical trial. My symptoms have been increased fatigue, so I rest/sleep more, ie a daily nap when I can manage, some nausea (not daily but when it hits me it really hits me, maybe once a week), some whitening on my skin (noticeable to my doctor and under a blacklight), a rash all over my body after the 14th week, not itchy, and not that noticeable to anyone but me. I think that is about it for side effects. I am very pleased needless to say!!! I asked what the "durable response" is and my oncologist said he could predict that, but he is hoping "forever"!!!!

       

      I am B-Raf negative by the way, and have had melanoma since March 2006. Read my profile if interested for an accounting of all the treatments I have done. Many treatments perhaps delayed re-occurence but Ipi (besides resection where possible) is the only thing that has effectively "worked" to eradicate my melanomas. I hope this gives others HOPE for themselves!

      Vermont_Donna, stage 3a

      currently stable after 4 infusions of Ipi

    Viewing 35 reply threads
    • Replies
        Vermont_Donna
        Participant

          I apologize for the spelling errors….my oncologist COULDNT predict durable response is what I meant to say!

          Donna

          Vermont_Donna
          Participant

            I apologize for the spelling errors….my oncologist COULDNT predict durable response is what I meant to say!

            Donna

            Jerry from Cape Cod
            Participant

              GREAT news Donna,

              Thanks for sharing

              Jerry from Cape Cod

              Jerry from Cape Cod
              Participant

                GREAT news Donna,

                Thanks for sharing

                Jerry from Cape Cod

                Wahoo and Yippee Skippee!  You deserve thie awesome news after the struggles you have dealt with.  Congratulations. 

                Are you doing the happy dance as you run dig through the snow???  You can go spray something in the snow to celebrate. 

                I will pray that you have continued response.

                Surrounding you with love and light,

                Shelly

                Wahoo and Yippee Skippee!  You deserve thie awesome news after the struggles you have dealt with.  Congratulations. 

                Are you doing the happy dance as you run dig through the snow???  You can go spray something in the snow to celebrate. 

                I will pray that you have continued response.

                Surrounding you with love and light,

                Shelly

                KellieSue
                Participant

                  Oh that is just fantasic news! So happy for you! I'm hoping your scans show continued dead melanoma!!!

                  Kellie(from Iowa) Stage IV on B-raf

                  KellieSue
                  Participant

                    Oh that is just fantasic news! So happy for you! I'm hoping your scans show continued dead melanoma!!!

                    Kellie(from Iowa) Stage IV on B-raf

                    Bonnie Lea
                    Participant

                      Oh Donna from the Maple woods of Vermont

                       

                      I am SOOOOOOO Happy to hear this news.  I hope everyone who is here reads your news and shouts  hip hip hooray both for you (natch) and for life itself.

                      Bonnie Lea
                      Participant

                        Oh Donna from the Maple woods of Vermont

                         

                        I am SOOOOOOO Happy to hear this news.  I hope everyone who is here reads your news and shouts  hip hip hooray both for you (natch) and for life itself.

                        ValinMtl
                        Participant

                          Hi neighbour…I'm just delighted to hear this, such good news after you have gone through so much!  I pray it is forever and ever amen,  Val xx

                          ValinMtl
                          Participant

                            Hi neighbour…I'm just delighted to hear this, such good news after you have gone through so much!  I pray it is forever and ever amen,  Val xx

                            lhaley
                            Participant

                              Just love your news!!!!  I hope your response has removed melanoma from your worries!!  From what I understand ippi is one of those drugs that can be readministered if it comes back.

                              You bring hope to everyone!!  The board has been so slow lately but I hope you have many many readers so people know of your success!

                              Linda

                              Stage IV stable

                              lhaley
                              Participant

                                Just love your news!!!!  I hope your response has removed melanoma from your worries!!  From what I understand ippi is one of those drugs that can be readministered if it comes back.

                                You bring hope to everyone!!  The board has been so slow lately but I hope you have many many readers so people know of your success!

                                Linda

                                Stage IV stable

                                Sherron
                                Participant

                                  Donna – This is terrific news…I am so happy for you…..!!!!!

                                  Take Care,

                                  Sherron, wife to Jim FOREVER

                                  Sherron
                                  Participant

                                    Donna – This is terrific news…I am so happy for you…..!!!!!

                                    Take Care,

                                    Sherron, wife to Jim FOREVER

                                    dian in spokane
                                    Participant

                                      wow donna! fantastic!!

                                      dian in spokane
                                      Participant

                                        wow donna! fantastic!!

                                        molly
                                        Participant

                                          Donna, so happy for your great news!!

                                          molly

                                            Laurie from maine
                                            Participant

                                              HOOORAY!!!!  what wonderful news – how amazing!!! You must be floating how wonderful, enjoy!!

                                              laurie from maine

                                              Laurie from maine
                                              Participant

                                                HOOORAY!!!!  what wonderful news – how amazing!!! You must be floating how wonderful, enjoy!!

                                                laurie from maine

                                              molly
                                              Participant

                                                Donna, so happy for your great news!!

                                                molly

                                                jag
                                                Participant

                                                  Fantastic Donna, The really  great thing is that you will have a durable response if IPI continues to work.

                                                  Take a break, relax and celebrate.

                                                  John

                                                  jag
                                                  Participant

                                                    Fantastic Donna, The really  great thing is that you will have a durable response if IPI continues to work.

                                                    Take a break, relax and celebrate.

                                                    John

                                                    Jim M.
                                                    Participant

                                                      That is awesome news Donna. Miracles do happen, large and small. I predict your durable response to be forever!!

                                                       God Bless,

                                                       Jim M.

                                                      Jim M.
                                                      Participant

                                                        That is awesome news Donna. Miracles do happen, large and small. I predict your durable response to be forever!!

                                                         God Bless,

                                                         Jim M.

                                                        Rocco
                                                        Participant

                                                          Wow Donna!  This is fantastic news!  I'm so happy for you.  This post really made my day. 

                                                           

                                                          Rocco – Ipi responder in NH

                                                          Rocco
                                                          Participant

                                                            Wow Donna!  This is fantastic news!  I'm so happy for you.  This post really made my day. 

                                                             

                                                            Rocco – Ipi responder in NH

                                                            triciad
                                                            Participant

                                                              Donna,

                                                              Congratulations!  Great news like this is so uplifting for everyone here.  Thank you for posting this wonderful news, and I pray you will never see another melanoma again! 

                                                              Tricia

                                                              triciad
                                                              Participant

                                                                Donna,

                                                                Congratulations!  Great news like this is so uplifting for everyone here.  Thank you for posting this wonderful news, and I pray you will never see another melanoma again! 

                                                                Tricia

                                                                Rebecca and Bob
                                                                Participant

                                                                  Donna,

                                                                   

                                                                  What great news thanks for the detailed info. It's nice to know how long it took to start working. Hopefully forever is how long it will stay away, it must have been amazing to see it going away.

                                                                   

                                                                  Rebecca

                                                                  Rebecca and Bob
                                                                  Participant

                                                                    Donna,

                                                                     

                                                                    What great news thanks for the detailed info. It's nice to know how long it took to start working. Hopefully forever is how long it will stay away, it must have been amazing to see it going away.

                                                                     

                                                                    Rebecca

                                                                    SusanE
                                                                    Participant

                                                                      Hi Donna! So happy to hear your news! FANTASTIC!!

                                                                       

                                                                      questions- did your wounds finally heal? Was it the wound vac that made the difference? Blood type- are you HLA positive? I think it is HLA*0201 or something like that…. Jerry is braf negative too but HLA positive. He was negative for ckit too. Did you test for ckit?

                                                                       

                                                                      Take care and I hope to hear from you. Keep up the good work!!!

                                                                      Hugs and hugs,

                                                                      Susan

                                                                        Vermont_Donna
                                                                        Participant

                                                                          Hi Susan,

                                                                          No the leg wounds are not healed (9 months for one and 5 months for the second) although they are healing very slowly. They still are open, draining lymph fluid, so I bandage them daily and am using Santyl, an enzyme debrider, daily, to help eliminate the "slough" that the cells generate daily that interferes with the development of granulation (healing) tissue. I am hoping that by summer, that maybe, just maybe I can go swimming in the lake this year! The wound vac did not work for me as the wounds were/are producing too much "slough" or exudate. I know, gross. The healing has been compromised by the radiation treaments and the ILP I did. So the blood vessels have all been shut down/compromised etc. Thats why it is such slow healing. I am also exercising now, two to three days a week at the gym with a personal trainer and that is increasing blood flow to the area, which will help. I also try to eat 80 grams of protein a day (something I wasnt doing before).

                                                                          I do not know if I am HLA positive or ckit positive, and am not sure what those things would mean. It is confusing for me about those things.

                                                                          Where is Jerry at regarding treatments?? Hope you are all doing well!

                                                                          Vermont_Donna

                                                                          killmel
                                                                          Participant

                                                                            Hang in there Donna the wounds will get better

                                                                            killmel
                                                                            Participant

                                                                              Hang in there Donna the wounds will get better

                                                                              Vermont_Donna
                                                                              Participant

                                                                                Hi Susan,

                                                                                No the leg wounds are not healed (9 months for one and 5 months for the second) although they are healing very slowly. They still are open, draining lymph fluid, so I bandage them daily and am using Santyl, an enzyme debrider, daily, to help eliminate the "slough" that the cells generate daily that interferes with the development of granulation (healing) tissue. I am hoping that by summer, that maybe, just maybe I can go swimming in the lake this year! The wound vac did not work for me as the wounds were/are producing too much "slough" or exudate. I know, gross. The healing has been compromised by the radiation treaments and the ILP I did. So the blood vessels have all been shut down/compromised etc. Thats why it is such slow healing. I am also exercising now, two to three days a week at the gym with a personal trainer and that is increasing blood flow to the area, which will help. I also try to eat 80 grams of protein a day (something I wasnt doing before).

                                                                                I do not know if I am HLA positive or ckit positive, and am not sure what those things would mean. It is confusing for me about those things.

                                                                                Where is Jerry at regarding treatments?? Hope you are all doing well!

                                                                                Vermont_Donna

                                                                              SusanE
                                                                              Participant

                                                                                Hi Donna! So happy to hear your news! FANTASTIC!!

                                                                                 

                                                                                questions- did your wounds finally heal? Was it the wound vac that made the difference? Blood type- are you HLA positive? I think it is HLA*0201 or something like that…. Jerry is braf negative too but HLA positive. He was negative for ckit too. Did you test for ckit?

                                                                                 

                                                                                Take care and I hope to hear from you. Keep up the good work!!!

                                                                                Hugs and hugs,

                                                                                Susan

                                                                                JenC
                                                                                Participant
                                                                                  I am so happy for you! Excellent news!
                                                                                  JenC
                                                                                  JenC
                                                                                  Participant
                                                                                    I am so happy for you! Excellent news!
                                                                                    JenC
                                                                                    Sharyn
                                                                                    Participant

                                                                                      YAAAAY DONNA!!! I am soooo happy for you! All of my sub-qs disappeared with ipi too, and like you, I am also B-RAF negative. I wonder if that has something to do with ipi's effectiveness on us? I have a CT scan this afternoon, so I'll soon know what kind of havoc ipi has wreaked on my lung met. I'm at the end of the 12-24 week time off, and hope to resume soon. I kind of got sidetracked with the craniotomy and SRS. But if the brain mets are stable or shrunk or gone, I'll be soon back on ipi. You make sure you celebrate big time! I really think we're on to something promising here!!

                                                                                      Hugs

                                                                                      Sharyn

                                                                                      Sharyn
                                                                                      Participant

                                                                                        YAAAAY DONNA!!! I am soooo happy for you! All of my sub-qs disappeared with ipi too, and like you, I am also B-RAF negative. I wonder if that has something to do with ipi's effectiveness on us? I have a CT scan this afternoon, so I'll soon know what kind of havoc ipi has wreaked on my lung met. I'm at the end of the 12-24 week time off, and hope to resume soon. I kind of got sidetracked with the craniotomy and SRS. But if the brain mets are stable or shrunk or gone, I'll be soon back on ipi. You make sure you celebrate big time! I really think we're on to something promising here!!

                                                                                        Hugs

                                                                                        Sharyn

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