Yervoy users past & present

Forums General Melanoma Community Yervoy users past & present

  • Post
    Jewel
    Participant

      Ken is going to have his 4th dose of Yervoy tomorrow. How long was it before you had a scan? From my understanding it is really the one taken 3 months after that they determine a responce? True, False, your experiences. Ken went into this with resected disease, but the node was bleeding and the size of a fist. Thanks for any and all help. They are also talking about possible maintanance doses?

      Jewel

    Viewing 8 reply threads
    • Replies
        Gene_S
        Participant

          Hello Jewel,

          My husband started Yervoy clinical trial with GM-CSF in March 2011.  He had some sub q's and an unresectable tumour pushing on the spine up at the C1-C2 level.  We watched the sub q's get smaller and disappear as well as the unresectable one.  He also had lesions in his liver and lungs and was Stage IV.  After the initial 4 treatments he went onto maintenance doses and remained on it for over 2 years.  He has been NED since Oct. 2012 but didn't go off of the treatment until Dec. 2013.

          We knew the Yervoy was working as we watched it work and at about 16 weeks or so his eyebrows, mustache and beard hair turned white which made the onc so happy as he said more proof it was working.  You can read about him on his profile page if you would like. I believe the scans happen about every 12 weeks.  We also watched his LDH levels return to normal and they were very high.

          My husband also takes Vitamin D3 (which is actually a hormone) daily and did through his treatment as the Vitamin D3 levels where we live are very low in most as we don't have enough sunshine.

          Here is hoping that Yervoy works for him.

          Judy (loving wife of Gene Stage IV and now NED)

          Gene_S
          Participant

            Hello Jewel,

            My husband started Yervoy clinical trial with GM-CSF in March 2011.  He had some sub q's and an unresectable tumour pushing on the spine up at the C1-C2 level.  We watched the sub q's get smaller and disappear as well as the unresectable one.  He also had lesions in his liver and lungs and was Stage IV.  After the initial 4 treatments he went onto maintenance doses and remained on it for over 2 years.  He has been NED since Oct. 2012 but didn't go off of the treatment until Dec. 2013.

            We knew the Yervoy was working as we watched it work and at about 16 weeks or so his eyebrows, mustache and beard hair turned white which made the onc so happy as he said more proof it was working.  You can read about him on his profile page if you would like. I believe the scans happen about every 12 weeks.  We also watched his LDH levels return to normal and they were very high.

            My husband also takes Vitamin D3 (which is actually a hormone) daily and did through his treatment as the Vitamin D3 levels where we live are very low in most as we don't have enough sunshine.

            Here is hoping that Yervoy works for him.

            Judy (loving wife of Gene Stage IV and now NED)

            Gene_S
            Participant

              Hello Jewel,

              My husband started Yervoy clinical trial with GM-CSF in March 2011.  He had some sub q's and an unresectable tumour pushing on the spine up at the C1-C2 level.  We watched the sub q's get smaller and disappear as well as the unresectable one.  He also had lesions in his liver and lungs and was Stage IV.  After the initial 4 treatments he went onto maintenance doses and remained on it for over 2 years.  He has been NED since Oct. 2012 but didn't go off of the treatment until Dec. 2013.

              We knew the Yervoy was working as we watched it work and at about 16 weeks or so his eyebrows, mustache and beard hair turned white which made the onc so happy as he said more proof it was working.  You can read about him on his profile page if you would like. I believe the scans happen about every 12 weeks.  We also watched his LDH levels return to normal and they were very high.

              My husband also takes Vitamin D3 (which is actually a hormone) daily and did through his treatment as the Vitamin D3 levels where we live are very low in most as we don't have enough sunshine.

              Here is hoping that Yervoy works for him.

              Judy (loving wife of Gene Stage IV and now NED)

              Mat
              Participant

                Jewel, my recollection is that 16 to 24 weeks following the last infusion is the sweet spot for the typical Ipi response.

                Mat
                Participant

                  Jewel, my recollection is that 16 to 24 weeks following the last infusion is the sweet spot for the typical Ipi response.

                  Mat
                  Participant

                    Jewel, my recollection is that 16 to 24 weeks following the last infusion is the sweet spot for the typical Ipi response.

                      rick1981
                      Participant

                        And do you happen to know this for pd1? Thanks

                        rick1981
                        Participant

                          And do you happen to know this for pd1? Thanks

                          rick1981
                          Participant

                            And do you happen to know this for pd1? Thanks

                            Mat
                            Participant

                              Rick, I don't, but the time period should be significantly less for pd-1.

                              Mat
                              Participant

                                Rick, I don't, but the time period should be significantly less for pd-1.

                                Mat
                                Participant

                                  Rick, I don't, but the time period should be significantly less for pd-1.

                                _Paul_
                                Participant

                                  Hi Jewel,

                                  I just finished Yervoy in November. My oncologist suggested I not have the fourth infusion because my pituitary became inflamed and stopped functioning properly.

                                  My first infusion was on 9/24 and I had a follow-up CT on 12/30, so yeah, just a little over 3 months from the onset.

                                  My Dr. and I have not discussed maintenance doses. From what I have read, that may be outside standard-of-care and therefore not covered by some health insurance providers.

                                  My CT results were encouraging. The multiple mets in my liver and lungs were unchanged from a scan from 9/8/14. Only a larger tumor in my gallbladder had increased, and I just had that resected this past Friday.

                                  – Paul

                                  _Paul_
                                  Participant

                                    Hi Jewel,

                                    I just finished Yervoy in November. My oncologist suggested I not have the fourth infusion because my pituitary became inflamed and stopped functioning properly.

                                    My first infusion was on 9/24 and I had a follow-up CT on 12/30, so yeah, just a little over 3 months from the onset.

                                    My Dr. and I have not discussed maintenance doses. From what I have read, that may be outside standard-of-care and therefore not covered by some health insurance providers.

                                    My CT results were encouraging. The multiple mets in my liver and lungs were unchanged from a scan from 9/8/14. Only a larger tumor in my gallbladder had increased, and I just had that resected this past Friday.

                                    – Paul

                                    _Paul_
                                    Participant

                                      Hi Jewel,

                                      I just finished Yervoy in November. My oncologist suggested I not have the fourth infusion because my pituitary became inflamed and stopped functioning properly.

                                      My first infusion was on 9/24 and I had a follow-up CT on 12/30, so yeah, just a little over 3 months from the onset.

                                      My Dr. and I have not discussed maintenance doses. From what I have read, that may be outside standard-of-care and therefore not covered by some health insurance providers.

                                      My CT results were encouraging. The multiple mets in my liver and lungs were unchanged from a scan from 9/8/14. Only a larger tumor in my gallbladder had increased, and I just had that resected this past Friday.

                                      – Paul

                                  Viewing 8 reply threads
                                  • You must be logged in to reply to this topic.
                                  About the MRF Patient Forum

                                  The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                  The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                  Popular Topics