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.

Yervoy patients, please welcome me as newest member

Forums Mucosal Melanoma Community Yervoy patients, please welcome me as newest member

  • Post
    hawaii marcus
    Participant

      Hi,

      I am a 1 yr survivor of Mucosal Melanoma from my left nasal cavity. Surgery removed tumor, radiation burned my face, and now I am a survivor in Hawaii.

      PET scans every 6 months, and now 3rd scan found metastasis in lymph nodes.

      Onc wants to start Yervoy, and I meet nurse next Wednesday to discuss. I am a 42 yr old male father, husband, and full time employee. I like to research and know what I'm getting into with treatment.

      This forum really helps to let me read others stories and experiences. Thank you!

      I hope this immunotherapy shows a good response in my tumors!

       

      Aloha!

      If you're bored, take a look at my blog: marcuscancervive.tumblr.com

    Viewing 8 reply threads
    • Replies
        LuckyMan51
        Participant

          Hey Marcus,

          While you are discussing the Yervoy option make sure you explore anti-Pd1 and some of the combo trials including it. I am currently NED after surgery and Yervoy as anti-Pd1 wasn't available when I was starting treatment as they weren't taking brain mets at that time. I think the anti-Pd1 results have been pretty spectacular and it would be worth exploring. If you can't find a way in now you can always take the Yervoy route and have anti-Pd1 as a plan B. Best wishes for a great response! 

            hawaii marcus
            Participant

              Thanks! That is exactly my plan. Yervoy, and then PD-1, but PD-1 is not available in Hawaii yet.  I spoke to my 2nd oncologist at UCLA where I applied for a clinical trial, but was not qualified because my tumors are too small. RECIST 1.1 requires 15 mm and I am only 10 mm, so here we are.

              Back in Hawaii with family and at home about to start Yervoy, should I be unsuccessful, or not tolerate, I hope to go back to Los Angeles for some trial with PD-1. And maybe someday it will be on expanded access here in Hawaii.

              Thank you again for your repsonse and alerting me to PD-1 as a plan B!

               

              Aloha!

              hawaii marcus
              Participant

                Thanks! That is exactly my plan. Yervoy, and then PD-1, but PD-1 is not available in Hawaii yet.  I spoke to my 2nd oncologist at UCLA where I applied for a clinical trial, but was not qualified because my tumors are too small. RECIST 1.1 requires 15 mm and I am only 10 mm, so here we are.

                Back in Hawaii with family and at home about to start Yervoy, should I be unsuccessful, or not tolerate, I hope to go back to Los Angeles for some trial with PD-1. And maybe someday it will be on expanded access here in Hawaii.

                Thank you again for your repsonse and alerting me to PD-1 as a plan B!

                 

                Aloha!

                hawaii marcus
                Participant

                  Thanks! That is exactly my plan. Yervoy, and then PD-1, but PD-1 is not available in Hawaii yet.  I spoke to my 2nd oncologist at UCLA where I applied for a clinical trial, but was not qualified because my tumors are too small. RECIST 1.1 requires 15 mm and I am only 10 mm, so here we are.

                  Back in Hawaii with family and at home about to start Yervoy, should I be unsuccessful, or not tolerate, I hope to go back to Los Angeles for some trial with PD-1. And maybe someday it will be on expanded access here in Hawaii.

                  Thank you again for your repsonse and alerting me to PD-1 as a plan B!

                   

                  Aloha!

                LuckyMan51
                Participant

                  Hey Marcus,

                  While you are discussing the Yervoy option make sure you explore anti-Pd1 and some of the combo trials including it. I am currently NED after surgery and Yervoy as anti-Pd1 wasn't available when I was starting treatment as they weren't taking brain mets at that time. I think the anti-Pd1 results have been pretty spectacular and it would be worth exploring. If you can't find a way in now you can always take the Yervoy route and have anti-Pd1 as a plan B. Best wishes for a great response! 

                  LuckyMan51
                  Participant

                    Hey Marcus,

                    While you are discussing the Yervoy option make sure you explore anti-Pd1 and some of the combo trials including it. I am currently NED after surgery and Yervoy as anti-Pd1 wasn't available when I was starting treatment as they weren't taking brain mets at that time. I think the anti-Pd1 results have been pretty spectacular and it would be worth exploring. If you can't find a way in now you can always take the Yervoy route and have anti-Pd1 as a plan B. Best wishes for a great response! 

                    Gene_S
                    Participant

                      Hello Marcus,

                      I wish you much luck with your journey and just wanted to let you know my husband was a Yervoy responder.  He was stage IV and started the clinical trial of Yervoy and GM-CSF in March 2011.  He became NED in October of 2012 and remained in the trial on maintenance doses every 12 weeks after the inital 4 in 12 weeks.  He dropped out of the clinical trial in December 2013.  You can read more on him in his profile.

                      Good luck,

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

                      Gene_S
                      Participant

                        Hello Marcus,

                        I wish you much luck with your journey and just wanted to let you know my husband was a Yervoy responder.  He was stage IV and started the clinical trial of Yervoy and GM-CSF in March 2011.  He became NED in October of 2012 and remained in the trial on maintenance doses every 12 weeks after the inital 4 in 12 weeks.  He dropped out of the clinical trial in December 2013.  You can read more on him in his profile.

                        Good luck,

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

                          hawaii marcus
                          Participant

                            Thank you Judy for your reply and support! Good to hear Gene is NED, I hope he stays that way!

                            Aloha,

                            Marcus

                             

                            hawaii marcus
                            Participant

                              Thank you Judy for your reply and support! Good to hear Gene is NED, I hope he stays that way!

                              Aloha,

                              Marcus

                               

                              hawaii marcus
                              Participant

                                Thank you Judy for your reply and support! Good to hear Gene is NED, I hope he stays that way!

                                Aloha,

                                Marcus

                                 

                              Gene_S
                              Participant

                                Hello Marcus,

                                I wish you much luck with your journey and just wanted to let you know my husband was a Yervoy responder.  He was stage IV and started the clinical trial of Yervoy and GM-CSF in March 2011.  He became NED in October of 2012 and remained in the trial on maintenance doses every 12 weeks after the inital 4 in 12 weeks.  He dropped out of the clinical trial in December 2013.  You can read more on him in his profile.

                                Good luck,

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

                                BrianP
                                Participant

                                  Hey Marcus,

                                  Good luck with the Yervoy.  As you probably have found out on your own, many tolerate Ipi quite well.  Hopefully you will be in that group.  Probably the most common side effect with Ipi is fatigue.  There has been some pretty severe fatigue reported but I think that's not common.  I'm sure you are aware of the colitis side effects and the importance of staying on top of diarhea.  One side effect that I try to tell folks about is the hypophysitis side effect.  Basically that is another autoimmune side effect where the pituitary gland becomes inflammed and swollen.  In my case in started as what felt like a mild sinus infection but over the course of a couple weeks became all over my head and quite painful.  The problem with this side effect is that in can cause permanent damage to the pituitary gland so you want to catch it early.  Let your care givers know if you have any type of persistent headache lasting much more than a day or two.  I would recommend drinking lots of water to reduce the possibility (or at least help in the event of) liver toxicities.  I think you have a good plan of trying the Ipi first and if that doesn't work move onto PD-1. 

                                  Take care,

                                  Brian

                                    hawaii marcus
                                    Participant

                                      Thank you Brian for all the tips of what to look out for during Ipi treatments. I got the packet from the Yervoy website, and that has the side effects listed on many pages.

                                      But hearing it directly from you with even more details is helpful! Thanks!

                                      I am hearing about expanded access to Merck MK3475, and that is good news. Currently, PD-1 is not available in Hawaii, as of yet! My doctors are talking about Compassionate Care possibly, after we see how I respond to Ipi. First things first, I guess!

                                      Aloha,

                                      Marcus

                                       

                                      hawaii marcus
                                      Participant

                                        Thank you Brian for all the tips of what to look out for during Ipi treatments. I got the packet from the Yervoy website, and that has the side effects listed on many pages.

                                        But hearing it directly from you with even more details is helpful! Thanks!

                                        I am hearing about expanded access to Merck MK3475, and that is good news. Currently, PD-1 is not available in Hawaii, as of yet! My doctors are talking about Compassionate Care possibly, after we see how I respond to Ipi. First things first, I guess!

                                        Aloha,

                                        Marcus

                                         

                                        hawaii marcus
                                        Participant

                                          Thank you Brian for all the tips of what to look out for during Ipi treatments. I got the packet from the Yervoy website, and that has the side effects listed on many pages.

                                          But hearing it directly from you with even more details is helpful! Thanks!

                                          I am hearing about expanded access to Merck MK3475, and that is good news. Currently, PD-1 is not available in Hawaii, as of yet! My doctors are talking about Compassionate Care possibly, after we see how I respond to Ipi. First things first, I guess!

                                          Aloha,

                                          Marcus

                                           

                                        BrianP
                                        Participant

                                          Hey Marcus,

                                          Good luck with the Yervoy.  As you probably have found out on your own, many tolerate Ipi quite well.  Hopefully you will be in that group.  Probably the most common side effect with Ipi is fatigue.  There has been some pretty severe fatigue reported but I think that's not common.  I'm sure you are aware of the colitis side effects and the importance of staying on top of diarhea.  One side effect that I try to tell folks about is the hypophysitis side effect.  Basically that is another autoimmune side effect where the pituitary gland becomes inflammed and swollen.  In my case in started as what felt like a mild sinus infection but over the course of a couple weeks became all over my head and quite painful.  The problem with this side effect is that in can cause permanent damage to the pituitary gland so you want to catch it early.  Let your care givers know if you have any type of persistent headache lasting much more than a day or two.  I would recommend drinking lots of water to reduce the possibility (or at least help in the event of) liver toxicities.  I think you have a good plan of trying the Ipi first and if that doesn't work move onto PD-1. 

                                          Take care,

                                          Brian

                                          BrianP
                                          Participant

                                            Hey Marcus,

                                            Good luck with the Yervoy.  As you probably have found out on your own, many tolerate Ipi quite well.  Hopefully you will be in that group.  Probably the most common side effect with Ipi is fatigue.  There has been some pretty severe fatigue reported but I think that's not common.  I'm sure you are aware of the colitis side effects and the importance of staying on top of diarhea.  One side effect that I try to tell folks about is the hypophysitis side effect.  Basically that is another autoimmune side effect where the pituitary gland becomes inflammed and swollen.  In my case in started as what felt like a mild sinus infection but over the course of a couple weeks became all over my head and quite painful.  The problem with this side effect is that in can cause permanent damage to the pituitary gland so you want to catch it early.  Let your care givers know if you have any type of persistent headache lasting much more than a day or two.  I would recommend drinking lots of water to reduce the possibility (or at least help in the event of) liver toxicities.  I think you have a good plan of trying the Ipi first and if that doesn't work move onto PD-1. 

                                            Take care,

                                            Brian

                                        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.