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IPI Week 108

Forums General Melanoma Community IPI Week 108

  • Post
    Jerry from Cape Cod
    Participant

      Hello All,

      I've been laying low for awhile, but thought it might be a time for an update.

      I've just reached my 108th week of participation in the IPI "Brain" trial.  It's a bit overwhelming with all the knowledge I've gained about Melanoma since my "move up" to Stage IV in January of '09 to still be an active participant.

      Hello All,

      I've been laying low for awhile, but thought it might be a time for an update.

      I've just reached my 108th week of participation in the IPI "Brain" trial.  It's a bit overwhelming with all the knowledge I've gained about Melanoma since my "move up" to Stage IV in January of '09 to still be an active participant.

      The MRI was consistent with the last done 3 months ago.  3 small "enhancing" lesions (too small to measure) in the brain. The docs are about ready to call them necrosis.  The remains of the radiated tumor in my C-spine is slowly shrinking away as my body disposes of the dead tissue.

      The mets on the left adrenal and the small bowel disappeared along with the majority of lung mets over a year ago.

      One pesky met in the left lower lobe obstructed a bronchial tube and caused the formation of a couple of small semi permanent pneumonias.  In the last month two bronchoscopes were done on the lobe.  The first, a flexible clearly showed the lesion in a very accessible location.  A week later a rigid tube scope was performed to attempt to remove the entire met.  Unfortunately there were some unforeseen difficulties and only about 2/3rds of the met could be harvested.  In addition the bronchial tube and lower lobe were "compromised" so the decision was made to remover the lower left lobe with a VATS procedure to be done in two weeks..

      The bottom line is once the lung procedure is complete I should have no active disease.  HOLY S*iT BATMAN!!!!

      The other good news is that I will remain in the IPI trial and continue on maintenance.

       

      Jerry from Cape Cod

    Viewing 23 reply threads
    • Replies
        lhaley
        Participant

          While reading your fantastic news tears of joy are rolling down my cheeks. 108 weeks and complete success is within your grasp!! 

          I'm sorry that the last few weeks have been so trying and you still have one more difficult procedure to go but WOW!

          With all of the bad news posts of late yours is sure a great mood elevator!

          Linda

          lhaley
          Participant

            While reading your fantastic news tears of joy are rolling down my cheeks. 108 weeks and complete success is within your grasp!! 

            I'm sorry that the last few weeks have been so trying and you still have one more difficult procedure to go but WOW!

            With all of the bad news posts of late yours is sure a great mood elevator!

            Linda

            NicOz
            Participant

              Holy $hit Batman is right! 🙂

              *sigh* Guess I'll be forced to raise a glass to you from across the pond tonight (2 hours 'til beer o'clock!) Way to kick butt, Jer!!

              Nic

              xxx

                Jerry from Cape Cod
                Participant

                  like anyone is successful in "forcing" you to do anything.  *G*

                  Hugs,

                  Jerry from Cape Cod

                   

                  Jerry from Cape Cod
                  Participant

                    like anyone is successful in "forcing" you to do anything.  *G*

                    Hugs,

                    Jerry from Cape Cod

                     

                  NicOz
                  Participant

                    Holy $hit Batman is right! 🙂

                    *sigh* Guess I'll be forced to raise a glass to you from across the pond tonight (2 hours 'til beer o'clock!) Way to kick butt, Jer!!

                    Nic

                    xxx

                    jag
                    Participant

                      Nice work IPI, Jerry's Body, and Jerry's Brain! Way to go!

                      jag
                      Participant

                        Nice work IPI, Jerry's Body, and Jerry's Brain! Way to go!

                        Rocco
                        Participant

                          Way to go super hero! 

                          Congrats on the continued response from ipi.   Best wishes for an uneventful VATs procedure and speedy recovery!

                          -Rocco, Stage IV, ipi responder (so far!)

                            Vermont_Donna
                            Participant

                              Glad to hear this news Jerry! How long is the ipi trial that you are in?? Hope the VATS goes smoothly!

                              Vermont_Donna, stage 3a, stable after 4infusions of Ipi

                              Jerry from Cape Cod
                              Participant

                                Hi Donna,

                                Same question I asked yesterday.  The answer is "unknown" however, it's suspected the BMS might want to keep responders in the program so they can have better control of the dosage, schedule, scans and followups with a group even if / after FDA approval. 

                                So we are just going with the flow.

                                Jerry from Cape Cod

                                Jerry from Cape Cod
                                Participant

                                  Hi Donna,

                                  Same question I asked yesterday.  The answer is "unknown" however, it's suspected the BMS might want to keep responders in the program so they can have better control of the dosage, schedule, scans and followups with a group even if / after FDA approval. 

                                  So we are just going with the flow.

                                  Jerry from Cape Cod

                                  Vermont_Donna
                                  Participant

                                    Glad to hear this news Jerry! How long is the ipi trial that you are in?? Hope the VATS goes smoothly!

                                    Vermont_Donna, stage 3a, stable after 4infusions of Ipi

                                  Rocco
                                  Participant

                                    Way to go super hero! 

                                    Congrats on the continued response from ipi.   Best wishes for an uneventful VATs procedure and speedy recovery!

                                    -Rocco, Stage IV, ipi responder (so far!)

                                    Sharyn
                                    Participant

                                      Fabulous news, Jerry! I want to be like you!!! I haven't heard anything back from Montreal about my ipi trial, despite several attempts to contact them. It seems BMS is stuck on whether I can have my week 24 CT scan here in Nfld, and not have to go to Montreal. I really don't understand why they're being so GD picky for a compassionate use trial! Anyway, hopefully I'll hear something soon. As for you, congratulations!! I hope one day I'll be able to brag about my own week 108, and you'll be congratulating me. Keep up the super duper response!

                                      Hugs

                                      Sharyn

                                      Sharyn
                                      Participant

                                        Fabulous news, Jerry! I want to be like you!!! I haven't heard anything back from Montreal about my ipi trial, despite several attempts to contact them. It seems BMS is stuck on whether I can have my week 24 CT scan here in Nfld, and not have to go to Montreal. I really don't understand why they're being so GD picky for a compassionate use trial! Anyway, hopefully I'll hear something soon. As for you, congratulations!! I hope one day I'll be able to brag about my own week 108, and you'll be congratulating me. Keep up the super duper response!

                                        Hugs

                                        Sharyn

                                        jim Breitfeller
                                        Participant

                                          Jerry,

                                          Contrats!!!!! you deserve it.

                                           

                                          Once Yervoy is FDA approved, you will see it as a the "NEW Gold Standard of Care" for Cancer. In combination with other immunotherapies, you will start hearing the word CURED!!!!

                                          Warm Regards,

                                           

                                          Jimmy B

                                          jim Breitfeller
                                          Participant

                                            Jerry,

                                            Contrats!!!!! you deserve it.

                                             

                                            Once Yervoy is FDA approved, you will see it as a the "NEW Gold Standard of Care" for Cancer. In combination with other immunotherapies, you will start hearing the word CURED!!!!

                                            Warm Regards,

                                             

                                            Jimmy B

                                            ValinMtl
                                            Participant

                                               JERRY…after the lung procedure…that means you're NED..yeaahhhhh.  That's what all us stage IV aspire to be…I want to be just like YOU!!  Like Sharyn, I'm waiting to see if I'm still eligible to continue..I pray so.  Val

                                              ValinMtl
                                              Participant

                                                 JERRY…after the lung procedure…that means you're NED..yeaahhhhh.  That's what all us stage IV aspire to be…I want to be just like YOU!!  Like Sharyn, I'm waiting to see if I'm still eligible to continue..I pray so.  Val

                                                ChristineL
                                                Participant

                                                  Jerry,

                                                  So great to hear from you, and that you are kickin' butt!  What a relief.  As always, I'm thinking of you.

                                                  Best,

                                                  ChristineL

                                                  ChristineL
                                                  Participant

                                                    Jerry,

                                                    So great to hear from you, and that you are kickin' butt!  What a relief.  As always, I'm thinking of you.

                                                    Best,

                                                    ChristineL

                                                    triciad
                                                    Participant

                                                      Jerry,

                                                      I love these types of stories…congratulations!  I am so happy to hear about your success; you are so helpful to everyone on this board; you definitely deserve this!  You are in my prayers for a successful VATS.

                                                      Keep the good news rolling!

                                                      Tricia

                                                      triciad
                                                      Participant

                                                        Jerry,

                                                        I love these types of stories…congratulations!  I am so happy to hear about your success; you are so helpful to everyone on this board; you definitely deserve this!  You are in my prayers for a successful VATS.

                                                        Keep the good news rolling!

                                                        Tricia

                                                        King
                                                        Participant

                                                          Jerry,

                                                           

                                                          Thanks for the update!  You are amazing…week 108..wow!  Wishing you a quick recovery from the VAT.  You are an inspiration to all.

                                                           

                                                          Stay Strong
                                                          King

                                                          Stage IV 7/05 Liver mets

                                                          King
                                                          Participant

                                                            Jerry,

                                                             

                                                            Thanks for the update!  You are amazing…week 108..wow!  Wishing you a quick recovery from the VAT.  You are an inspiration to all.

                                                             

                                                            Stay Strong
                                                            King

                                                            Stage IV 7/05 Liver mets

                                                            swissie
                                                            Participant

                                                              Wow Jerry, this is really great news.

                                                              I wonder if you are the longest responder here. How many timres did you get the medication now?

                                                              I had to end my trial (10mg/kg) after 8 rounds (in week 72). My fatigue was getting to much in the way of a normal life.
                                                              After reviewing the latest scan results I also found out that I had an enlarged spleen, so I am happy I ended the trial.

                                                              All the best for you!

                                                                Jerry from Cape Cod
                                                                Participant

                                                                  Hi Swissie,

                                                                  I know of a few longer term responders.  HIPPA restricts a lot of interchange.  At least one peaks in here every once in awhile. 

                                                                  I'm sorry to hear that your side effects were so severe.  Are you still stable/responding?

                                                                  Jerry from Cape Cod

                                                                  swissie
                                                                  Participant

                                                                    I was tumor-free before I started. "Only" stage IIIB. I guess I will never know if it worked or not (if I ever would have gotten tumors without the ipi).

                                                                    But I hope to have enough ipi in my body to keep me clean forever!

                                                                    All the best,
                                                                    Sabine

                                                                    Jerry from Cape Cod
                                                                    Participant

                                                                      Sabine,

                                                                      I'm happy to hear that you are doing well.  The researchers don't really know how long the blocker will work BUT if you tolerated all those rounds it's probably still in your future "arsenal" if anything should happen.  I also believe that we are at the very beginning of a lot of new science that will benefit all of us with Melanoma.

                                                                      Best,

                                                                      Jerry from Cape Cod

                                                                      Jerry from Cape Cod
                                                                      Participant

                                                                        Sabine,

                                                                        I'm happy to hear that you are doing well.  The researchers don't really know how long the blocker will work BUT if you tolerated all those rounds it's probably still in your future "arsenal" if anything should happen.  I also believe that we are at the very beginning of a lot of new science that will benefit all of us with Melanoma.

                                                                        Best,

                                                                        Jerry from Cape Cod

                                                                        swissie
                                                                        Participant

                                                                          I was tumor-free before I started. "Only" stage IIIB. I guess I will never know if it worked or not (if I ever would have gotten tumors without the ipi).

                                                                          But I hope to have enough ipi in my body to keep me clean forever!

                                                                          All the best,
                                                                          Sabine

                                                                          Jerry from Cape Cod
                                                                          Participant

                                                                            Hi Swissie,

                                                                            I know of a few longer term responders.  HIPPA restricts a lot of interchange.  At least one peaks in here every once in awhile. 

                                                                            I'm sorry to hear that your side effects were so severe.  Are you still stable/responding?

                                                                            Jerry from Cape Cod

                                                                          swissie
                                                                          Participant

                                                                            Wow Jerry, this is really great news.

                                                                            I wonder if you are the longest responder here. How many timres did you get the medication now?

                                                                            I had to end my trial (10mg/kg) after 8 rounds (in week 72). My fatigue was getting to much in the way of a normal life.
                                                                            After reviewing the latest scan results I also found out that I had an enlarged spleen, so I am happy I ended the trial.

                                                                            All the best for you!

                                                                            Jim M.
                                                                            Participant

                                                                              That's awesome Jerry! Sounds like you turned your body into an Ipi arsenal!!

                                                                               God Bless,

                                                                               Jim M.

                                                                               Stage 3C

                                                                               4 rounds of Ipi

                                                                              Jim M.
                                                                              Participant

                                                                                That's awesome Jerry! Sounds like you turned your body into an Ipi arsenal!!

                                                                                 God Bless,

                                                                                 Jim M.

                                                                                 Stage 3C

                                                                                 4 rounds of Ipi

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