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Scan results – not what we wanted

Forums General Melanoma Community Scan results – not what we wanted

  • Post
    MeNDave
    Participant

      Well, we got Dave's scan results yesterday, and they were not what we expected.  There has been growth of all existing tumors, and now there are 10 small lesions in both lungs and 11 on his liver.  We are devastated, as all of these developed in the past 6 weeks.  He was given the choice of doing Yervoy and monitor the eye issue, or move to a clinical trial somewhere else.  He did not offer the MDX-1105.

      Any suggestions, or experiences with Yervoy and liver mets would be appreciated.

      Well, we got Dave's scan results yesterday, and they were not what we expected.  There has been growth of all existing tumors, and now there are 10 small lesions in both lungs and 11 on his liver.  We are devastated, as all of these developed in the past 6 weeks.  He was given the choice of doing Yervoy and monitor the eye issue, or move to a clinical trial somewhere else.  He did not offer the MDX-1105.

      Any suggestions, or experiences with Yervoy and liver mets would be appreciated.

      Thank God for this board.  I don't know what I would do without all of you.

      Now, back to the trenches,

      Maria

    Viewing 14 reply threads
    • Replies
        Gene_S
        Participant

          So sorry to hear that your results were not good.  We were hoping that they would be great.

          My husband has liver and lung mets and is on a clinical trial for Yervoy for 1 year starting March 4, 2011.  He had several in his liver with the largest being 6 x 5 cm and it is down to 2 x 1.  He also had several in the lungs and now they are very small also with some being completely gone.  He also had one on his scalp pressing on the cervical spine at about c1-c2 area and it was unresectable as to much possibility of paralysis.  It is totally gone and there is even new cell growth where it was.  He is on the high dose 10mg/kg and goes for another maintenance dose next week on Friday.  While this is all good we also get disappointed when the scans don't show NED but at least it is working and his side effects have been minimal.  You can read more on his profile if you wish.

          I hope they find something that will work for Dave.  I will keep you in my thoughts and prayers.

          Judy (loving wife and caregiver of Gene Stage IV)

          Gene_S
          Participant

            So sorry to hear that your results were not good.  We were hoping that they would be great.

            My husband has liver and lung mets and is on a clinical trial for Yervoy for 1 year starting March 4, 2011.  He had several in his liver with the largest being 6 x 5 cm and it is down to 2 x 1.  He also had several in the lungs and now they are very small also with some being completely gone.  He also had one on his scalp pressing on the cervical spine at about c1-c2 area and it was unresectable as to much possibility of paralysis.  It is totally gone and there is even new cell growth where it was.  He is on the high dose 10mg/kg and goes for another maintenance dose next week on Friday.  While this is all good we also get disappointed when the scans don't show NED but at least it is working and his side effects have been minimal.  You can read more on his profile if you wish.

            I hope they find something that will work for Dave.  I will keep you in my thoughts and prayers.

            Judy (loving wife and caregiver of Gene Stage IV)

            Gene_S
            Participant

              So sorry to hear that your results were not good.  We were hoping that they would be great.

              My husband has liver and lung mets and is on a clinical trial for Yervoy for 1 year starting March 4, 2011.  He had several in his liver with the largest being 6 x 5 cm and it is down to 2 x 1.  He also had several in the lungs and now they are very small also with some being completely gone.  He also had one on his scalp pressing on the cervical spine at about c1-c2 area and it was unresectable as to much possibility of paralysis.  It is totally gone and there is even new cell growth where it was.  He is on the high dose 10mg/kg and goes for another maintenance dose next week on Friday.  While this is all good we also get disappointed when the scans don't show NED but at least it is working and his side effects have been minimal.  You can read more on his profile if you wish.

              I hope they find something that will work for Dave.  I will keep you in my thoughts and prayers.

              Judy (loving wife and caregiver of Gene Stage IV)

              samcanada
              Participant

                Maria,

                I'm sorry to hear your results were not what you hoped for.

                I just wanted you to know that you are in our thoughts and we are wishing you all the best with your continuing journey.

                Stay strong!

                Samantha

                samcanada
                Participant

                  Maria,

                  I'm sorry to hear your results were not what you hoped for.

                  I just wanted you to know that you are in our thoughts and we are wishing you all the best with your continuing journey.

                  Stay strong!

                  Samantha

                  samcanada
                  Participant

                    Maria,

                    I'm sorry to hear your results were not what you hoped for.

                    I just wanted you to know that you are in our thoughts and we are wishing you all the best with your continuing journey.

                    Stay strong!

                    Samantha

                    Phil S
                    Participant
                      Maria, Sorry to hear your news. I know how devastating bad scan results can be, and then it’s up to us when we are in total emotional trauma, to come up with a treatment plan. Just wanted you to know, you aren’t alone, and we hope and pray that whatever treatment Dave tries next works wonders! God bless, Valerie (Phil’s wife)

                      Phil S
                      Participant
                        Maria, Sorry to hear your news. I know how devastating bad scan results can be, and then it’s up to us when we are in total emotional trauma, to come up with a treatment plan. Just wanted you to know, you aren’t alone, and we hope and pray that whatever treatment Dave tries next works wonders! God bless, Valerie (Phil’s wife)

                        Phil S
                        Participant
                          Maria, Sorry to hear your news. I know how devastating bad scan results can be, and then it’s up to us when we are in total emotional trauma, to come up with a treatment plan. Just wanted you to know, you aren’t alone, and we hope and pray that whatever treatment Dave tries next works wonders! God bless, Valerie (Phil’s wife)

                          jim Breitfeller
                          Participant
                            Maria,
                            See if you can get Dave in a combination trial of yervoy + anti-PD1.
                            If not, try to find an anti-pd1 trial.

                            You may have to travel to get the anti- PD1.

                            Warm regards,

                            Jimmy b

                              killmel
                              Participant

                                Maria,

                                 

                                So sorry for your bad news. I agree with Jimmy.

                                 

                                For what it is worth, I would travel to the BEST melanoma specialist you can find.  Picking the next treatment for Dave is crucial…you might not get another chance since his melanoma is in a "growth" phase.

                                 

                                I think that Dr. Tony Ribas, at UCLA Medical Center is the "BEST"melanoma specialist on the West Coast. He has a wealth of information & experience dealing with Melanoma. He also has many  trials.

                                [email protected]
                                310 206-3928

                                 

                                It  is my understanding that he is recruiting for the MERCK anti-pd1 trial which Candi on her last post (3/27) indicated more patients at their 12 week scans are partial responders.

                                 

                                Good luck with your decision.

                                Mary

                                killmel
                                Participant

                                  Maria,

                                   

                                  So sorry for your bad news. I agree with Jimmy.

                                   

                                  For what it is worth, I would travel to the BEST melanoma specialist you can find.  Picking the next treatment for Dave is crucial…you might not get another chance since his melanoma is in a "growth" phase.

                                   

                                  I think that Dr. Tony Ribas, at UCLA Medical Center is the "BEST"melanoma specialist on the West Coast. He has a wealth of information & experience dealing with Melanoma. He also has many  trials.

                                  [email protected]
                                  310 206-3928

                                   

                                  It  is my understanding that he is recruiting for the MERCK anti-pd1 trial which Candi on her last post (3/27) indicated more patients at their 12 week scans are partial responders.

                                   

                                  Good luck with your decision.

                                  Mary

                                  killmel
                                  Participant

                                    Maria,

                                     

                                    So sorry for your bad news. I agree with Jimmy.

                                     

                                    For what it is worth, I would travel to the BEST melanoma specialist you can find.  Picking the next treatment for Dave is crucial…you might not get another chance since his melanoma is in a "growth" phase.

                                     

                                    I think that Dr. Tony Ribas, at UCLA Medical Center is the "BEST"melanoma specialist on the West Coast. He has a wealth of information & experience dealing with Melanoma. He also has many  trials.

                                    [email protected]
                                    310 206-3928

                                     

                                    It  is my understanding that he is recruiting for the MERCK anti-pd1 trial which Candi on her last post (3/27) indicated more patients at their 12 week scans are partial responders.

                                     

                                    Good luck with your decision.

                                    Mary

                                  jim Breitfeller
                                  Participant
                                    Maria,
                                    See if you can get Dave in a combination trial of yervoy + anti-PD1.
                                    If not, try to find an anti-pd1 trial.

                                    You may have to travel to get the anti- PD1.

                                    Warm regards,

                                    Jimmy b

                                    jim Breitfeller
                                    Participant
                                      Maria,
                                      See if you can get Dave in a combination trial of yervoy + anti-PD1.
                                      If not, try to find an anti-pd1 trial.

                                      You may have to travel to get the anti- PD1.

                                      Warm regards,

                                      Jimmy b

                                      triciad
                                      Participant

                                        Maria,

                                        I have no information to share, but I just wanted you to know that you both will be in my prayers.  It seems like you are in th middle of a rainstorm right now, but here's to hoping the rainbow (successful treatment) is right behind!  God bless!

                                        Tricia

                                        triciad
                                        Participant

                                          Maria,

                                          I have no information to share, but I just wanted you to know that you both will be in my prayers.  It seems like you are in th middle of a rainstorm right now, but here's to hoping the rainbow (successful treatment) is right behind!  God bless!

                                          Tricia

                                            Karin L
                                            Participant

                                              Praying for a rainbow for you both here too *hugs*.

                                              Karin

                                              Karin L
                                              Participant

                                                Praying for a rainbow for you both here too *hugs*.

                                                Karin

                                                Karin L
                                                Participant

                                                  Praying for a rainbow for you both here too *hugs*.

                                                  Karin

                                                triciad
                                                Participant

                                                  Maria,

                                                  I have no information to share, but I just wanted you to know that you both will be in my prayers.  It seems like you are in th middle of a rainstorm right now, but here's to hoping the rainbow (successful treatment) is right behind!  God bless!

                                                  Tricia

                                              Viewing 14 reply threads
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