The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Dave from Ormond

Forum Replies Created

Viewing 11 reply threads
  • Replies
      Dave from Ormond
      Participant

        I did the Ipi/Yervoy last year and the oncologist deemed it a failure.  He started me on Braf/MEK in May.  I had a scan last week and out of the 15 internal metasteses I had, 11 are "resolved", 1 shrunk more than 1 cm and the other 4 in my brain are still in question as I'm getting a Brain MRI next week.  They were too small to show up on the PET scan.

        My Doctor seems to think that the Yervoy is actually helping the Braf/MEK as I had some spots disappear very early on with the Braf/MEK.  Either way, the Braf/MEK is definitely working and I'm glad to hear that the expected extension of wellness is 25 months, not just 10.

        Good luck to your husband!

        Dave

        Dave from Ormond
        Participant

          I did the Ipi/Yervoy last year and the oncologist deemed it a failure.  He started me on Braf/MEK in May.  I had a scan last week and out of the 15 internal metasteses I had, 11 are "resolved", 1 shrunk more than 1 cm and the other 4 in my brain are still in question as I'm getting a Brain MRI next week.  They were too small to show up on the PET scan.

          My Doctor seems to think that the Yervoy is actually helping the Braf/MEK as I had some spots disappear very early on with the Braf/MEK.  Either way, the Braf/MEK is definitely working and I'm glad to hear that the expected extension of wellness is 25 months, not just 10.

          Good luck to your husband!

          Dave

          Dave from Ormond
          Participant

            I did the Ipi/Yervoy last year and the oncologist deemed it a failure.  He started me on Braf/MEK in May.  I had a scan last week and out of the 15 internal metasteses I had, 11 are "resolved", 1 shrunk more than 1 cm and the other 4 in my brain are still in question as I'm getting a Brain MRI next week.  They were too small to show up on the PET scan.

            My Doctor seems to think that the Yervoy is actually helping the Braf/MEK as I had some spots disappear very early on with the Braf/MEK.  Either way, the Braf/MEK is definitely working and I'm glad to hear that the expected extension of wellness is 25 months, not just 10.

            Good luck to your husband!

            Dave

            Dave from Ormond
            Participant

              You have stage IV, not 3 or 2.  So from what my oncologists tell me, you're going to have more and more spots pop up inside you, just like I did.  Cutting it out is such a temporary fix as is a cyber knife.  Radiation on your lungs may be a better alternative.  But there are bettter options out there for a Stage IV patient.

              I don't recommend Yervoy, because it didn't work for me AND I got every side effect possible.

              Ask your Oncologist about getting on B-Raf/MEK.  76% chance it will shrink, stabiliize or cure your Melanoma.  I just started taking this again………..due to some issues with taking it to start with and changing doses and such.  One of the other good parts is that you will know in 8 weeks whether or not it's working.  Then you can go pursue other options.

              Make smart choices!  I know it's hard to do with all the different opinions and new options.

              Good luck to you!

              Dave from Ormond
              Participant

                You have stage IV, not 3 or 2.  So from what my oncologists tell me, you're going to have more and more spots pop up inside you, just like I did.  Cutting it out is such a temporary fix as is a cyber knife.  Radiation on your lungs may be a better alternative.  But there are bettter options out there for a Stage IV patient.

                I don't recommend Yervoy, because it didn't work for me AND I got every side effect possible.

                Ask your Oncologist about getting on B-Raf/MEK.  76% chance it will shrink, stabiliize or cure your Melanoma.  I just started taking this again………..due to some issues with taking it to start with and changing doses and such.  One of the other good parts is that you will know in 8 weeks whether or not it's working.  Then you can go pursue other options.

                Make smart choices!  I know it's hard to do with all the different opinions and new options.

                Good luck to you!

                Dave from Ormond
                Participant

                  You have stage IV, not 3 or 2.  So from what my oncologists tell me, you're going to have more and more spots pop up inside you, just like I did.  Cutting it out is such a temporary fix as is a cyber knife.  Radiation on your lungs may be a better alternative.  But there are bettter options out there for a Stage IV patient.

                  I don't recommend Yervoy, because it didn't work for me AND I got every side effect possible.

                  Ask your Oncologist about getting on B-Raf/MEK.  76% chance it will shrink, stabiliize or cure your Melanoma.  I just started taking this again………..due to some issues with taking it to start with and changing doses and such.  One of the other good parts is that you will know in 8 weeks whether or not it's working.  Then you can go pursue other options.

                  Make smart choices!  I know it's hard to do with all the different opinions and new options.

                  Good luck to you!

                  Dave from Ormond
                  Participant

                    I finished my fourth dose of Yervoy last November.  From my experience and from what I've read of others, nobody typically develops a spring in their step by the 3rd dose.  It was at my 3rd treatment where I lost my spring in my step.  The first one was fine, second one got rougher and the third was down right painful.

                    I'm not trying to be the bearer of bad news, but you need to be prepared for the worst.  The only consist thing about Yervoy is that EVERYONE has unique reactions, side effects, and results.  Call the manufacturer.  Sign up for their online support.  Get a 2nd Doctor's opinion.  

                    What your doctor told you sounds like he is ill informed about Ipi/Yervoy and you may want to seek others opinions.

                    Dave from Ormond
                    Participant

                      I finished my fourth dose of Yervoy last November.  From my experience and from what I've read of others, nobody typically develops a spring in their step by the 3rd dose.  It was at my 3rd treatment where I lost my spring in my step.  The first one was fine, second one got rougher and the third was down right painful.

                      I'm not trying to be the bearer of bad news, but you need to be prepared for the worst.  The only consist thing about Yervoy is that EVERYONE has unique reactions, side effects, and results.  Call the manufacturer.  Sign up for their online support.  Get a 2nd Doctor's opinion.  

                      What your doctor told you sounds like he is ill informed about Ipi/Yervoy and you may want to seek others opinions.

                      Dave from Ormond
                      Participant

                        I finished my fourth dose of Yervoy last November.  From my experience and from what I've read of others, nobody typically develops a spring in their step by the 3rd dose.  It was at my 3rd treatment where I lost my spring in my step.  The first one was fine, second one got rougher and the third was down right painful.

                        I'm not trying to be the bearer of bad news, but you need to be prepared for the worst.  The only consist thing about Yervoy is that EVERYONE has unique reactions, side effects, and results.  Call the manufacturer.  Sign up for their online support.  Get a 2nd Doctor's opinion.  

                        What your doctor told you sounds like he is ill informed about Ipi/Yervoy and you may want to seek others opinions.

                        Dave from Ormond
                        Participant

                          Geez, that's some uplifting news for people going through the trials and tribulations of battling Melanoma.  

                          Dave from Ormond
                          Participant

                            Geez, that's some uplifting news for people going through the trials and tribulations of battling Melanoma.  

                            Dave from Ormond
                            Participant

                              Geez, that's some uplifting news for people going through the trials and tribulations of battling Melanoma.  

                              Dave from Ormond
                              Participant

                                Thanks for all the help everyone!  I really appreciate it.

                                One question:  On the Social Security Disablity website they say you have to be not working to even apply.  I am currently still working.  Can I still apply and get approved?

                                Thanks again.

                                Dave from Ormond
                                Participant

                                  Thanks for all the help everyone!  I really appreciate it.

                                  One question:  On the Social Security Disablity website they say you have to be not working to even apply.  I am currently still working.  Can I still apply and get approved?

                                  Thanks again.

                                  Dave from Ormond
                                  Participant

                                    Thanks for all the help everyone!  I really appreciate it.

                                    One question:  On the Social Security Disablity website they say you have to be not working to even apply.  I am currently still working.  Can I still apply and get approved?

                                    Thanks again.

                                Viewing 11 reply threads