New member and wife of melanoma paitent

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  • Post
    • May 22, 2016 at 7:38 pm
    ota2lst@yahoo.com
    Participant

      Hi.  My name is Linda.  My husband, Ben was diagnosed with stage 4 melanoma this past January after coughing up blood.  He had melanoma on the back of his head 23 years ago which was successfully removed with lots of tissue, followed up quarterly for 20  years and every six months for the past three.  Just following up with a derm. was not sufficient apparently.  Attempted clinical trial at UPMC (Pittsburgh) and was disqualified due to bloodwork not where it needed to be.  Our onc. started him on nivolumab and after six treatments had PET scan that showed mets in his bones in many places in addition to the tumor in his lungs and lynph nodes.  Afraid to continue with the nivo. as in a couple more months he could be too weak for other treatments or worse, so starting on Taf/Mek as soon as they get here in the mail.   He has been pretty sick from the nivolumab.  We are hoping that the drug combo will buy him a year to 18 months and by that time some new "miracle" drug will be out there.  Found this board and thought I'd like to talk to others who are dealing with this horrible disease that has totally taken over our lives.  We have hope though, and want to continue to be positive.  Will welcome comments, etc . . . 

    Viewing 8 reply threads
    • Replies
        • May 22, 2016 at 7:51 pm
        jade1111
        Participant

          So Sorry Linda about your husband's diagnosis. I have found this board very helpful. My mom was just diagnosed with stage 4 a few months ago.I have found the input here very insightful. What I have learned in past few months is to really ask around and get second opinions. Its been a slow process figuring it all out. Hope  the combo works well. Apparently the combos have a higher success rate.

          Wishing you both all the best!!! 

          Peace and Healing!

            • May 22, 2016 at 7:58 pm
            ota2lst@yahoo.com
            Participant

              Thanks and I hope your mom is doing ok.  I know that I need the support of others who are going through this.  Just taking things one day at a time.

              • May 22, 2016 at 7:58 pm
              ota2lst@yahoo.com
              Participant

                Thanks and I hope your mom is doing ok.  I know that I need the support of others who are going through this.  Just taking things one day at a time.

                • May 22, 2016 at 7:58 pm
                ota2lst@yahoo.com
                Participant

                  Thanks and I hope your mom is doing ok.  I know that I need the support of others who are going through this.  Just taking things one day at a time.

                • May 22, 2016 at 7:51 pm
                jade1111
                Participant

                  So Sorry Linda about your husband's diagnosis. I have found this board very helpful. My mom was just diagnosed with stage 4 a few months ago.I have found the input here very insightful. What I have learned in past few months is to really ask around and get second opinions. Its been a slow process figuring it all out. Hope  the combo works well. Apparently the combos have a higher success rate.

                  Wishing you both all the best!!! 

                  Peace and Healing!

                  • May 22, 2016 at 7:51 pm
                  jade1111
                  Participant

                    So Sorry Linda about your husband's diagnosis. I have found this board very helpful. My mom was just diagnosed with stage 4 a few months ago.I have found the input here very insightful. What I have learned in past few months is to really ask around and get second opinions. Its been a slow process figuring it all out. Hope  the combo works well. Apparently the combos have a higher success rate.

                    Wishing you both all the best!!! 

                    Peace and Healing!

                    • May 23, 2016 at 12:22 am
                    Mamapegela
                    Participant

                      Hi Linda-

                      I really don't have any information to offer you as I am pretty new to this forum myself.  Just know that you are not alone and that there are many other people walking on the same path with you.  Good for you for reaching out.  There are a lot of very informed, intelligent and caring people who regularly check in here and I'm sure will have great insight for you. 

                      I'll be keeping you and your husband in my thoughts and prayers.

                       

                      • May 23, 2016 at 12:22 am
                      Mamapegela
                      Participant

                        Hi Linda-

                        I really don't have any information to offer you as I am pretty new to this forum myself.  Just know that you are not alone and that there are many other people walking on the same path with you.  Good for you for reaching out.  There are a lot of very informed, intelligent and caring people who regularly check in here and I'm sure will have great insight for you. 

                        I'll be keeping you and your husband in my thoughts and prayers.

                         

                          • May 23, 2016 at 1:02 am
                          ota2lst@yahoo.com
                          Participant

                            Thanks Peggy.  It is just nice to know that I am not alone in this.  I feel so helpless so much of the time.  This website is great.

                            • May 23, 2016 at 1:02 am
                            ota2lst@yahoo.com
                            Participant

                              Thanks Peggy.  It is just nice to know that I am not alone in this.  I feel so helpless so much of the time.  This website is great.

                              • May 23, 2016 at 1:02 am
                              ota2lst@yahoo.com
                              Participant

                                Thanks Peggy.  It is just nice to know that I am not alone in this.  I feel so helpless so much of the time.  This website is great.

                              • May 23, 2016 at 12:22 am
                              Mamapegela
                              Participant

                                Hi Linda-

                                I really don't have any information to offer you as I am pretty new to this forum myself.  Just know that you are not alone and that there are many other people walking on the same path with you.  Good for you for reaching out.  There are a lot of very informed, intelligent and caring people who regularly check in here and I'm sure will have great insight for you. 

                                I'll be keeping you and your husband in my thoughts and prayers.

                                 

                                • May 23, 2016 at 10:02 am
                                MoiraM
                                Participant

                                  Hopefully the Taf/Met will shirnk the tumours, or at least stop them growing.

                                  Have you discussed Ipi(Yervoy) with your doctor? Maybe that might be a possibility?

                                  • May 23, 2016 at 10:02 am
                                  MoiraM
                                  Participant

                                    Hopefully the Taf/Met will shirnk the tumours, or at least stop them growing.

                                    Have you discussed Ipi(Yervoy) with your doctor? Maybe that might be a possibility?

                                      • May 25, 2016 at 12:18 pm
                                      Maureen038
                                      Participant

                                        Linda,

                                           My husband has been stage four for three and a half years. I love your attitude of of trying the combo and then eventually some new drug will come out. My husband has always felt that way too. It's good you're reaching out to people. Make sure you have a strong support system where you live too. It's truly a roller coaster ride of emotions, but it does give you keen insight on what's truly important in life. Wishing you and your husband the best!!

                                        Maureen

                                         

                                          

                                        • May 25, 2016 at 12:18 pm
                                        Maureen038
                                        Participant

                                          Linda,

                                             My husband has been stage four for three and a half years. I love your attitude of of trying the combo and then eventually some new drug will come out. My husband has always felt that way too. It's good you're reaching out to people. Make sure you have a strong support system where you live too. It's truly a roller coaster ride of emotions, but it does give you keen insight on what's truly important in life. Wishing you and your husband the best!!

                                          Maureen

                                           

                                            

                                          • May 25, 2016 at 12:18 pm
                                          Maureen038
                                          Participant

                                            Linda,

                                               My husband has been stage four for three and a half years. I love your attitude of of trying the combo and then eventually some new drug will come out. My husband has always felt that way too. It's good you're reaching out to people. Make sure you have a strong support system where you live too. It's truly a roller coaster ride of emotions, but it does give you keen insight on what's truly important in life. Wishing you and your husband the best!!

                                            Maureen

                                             

                                              

                                          • May 23, 2016 at 10:02 am
                                          MoiraM
                                          Participant

                                            Hopefully the Taf/Met will shirnk the tumours, or at least stop them growing.

                                            Have you discussed Ipi(Yervoy) with your doctor? Maybe that might be a possibility?

                                        Viewing 8 reply threads
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