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Artie’s courage and update
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Artie’s courage and update

› Forums › General Melanoma Community › Artie’s courage and update

  • Post
    • December 11, 2015 at 8:28 pm
    Maureen038
    Participant

      Hi all,

          It's been so long since I've posted because my husband has been in a battle with this awful disease. I haven't wanted to post it for a long time, but because of Artie's  incredibly brave postings about all of his struggles, I feel I must share what my husband has been dealing with in the hopes it can help someone else. After being on the Ipi/opdivo trial for over a year where he was just taking opdivo for at least nine months he progressed. We were SO close to NED. It was devastating!!! He had two lung nodules that were in the lung, but one was very close to the heart. He continued the opdivo for a month while we consulted with three melanoma specialists. The next scan both nodules doubled in size and the one by the heart, he had to have a heart MRI to make sure they could operate. We decided for him to have his third VATS surgery on the right lung because of how fast the growth was and how close it was to the heart. The surgery was successful, but he still had two nodules in the chest cavity. Each of the specialists had different opinions, but because Bill has had interferon(waste of time), TIL at NIH and then the Ipi/opdivo,there weren't many options. He didn't qualify for some new promising trials because he had hemolytic anemia due to the Ipi. When we went to Sloan Kettering they did a blood test to look and see if he had any common cancer mutations. We found out only about 2-3 percent of melanoma patients have the Her-2 mutation and Bill has an over abundance of it. They asked Bill to do the pill form of DTIC while they were waiting for the trial to start. He was supposed to take five days of pills and then wait three weeks and do it again. Unfortunately Bill's blood counts went so dangerously low he was in the hospital for nine days. Luckily he got out of the hospital the Friday before thanksgiving. Apparently Sloan Kettering is in the process of writing a paper about patients that have been on the Ipi/opdivo trial and progressed and then did the DTIC. They had five patients there that had very similar responses as Bill and they also had very good scan results. All of the patients were neutropenic.

      Bill lost about ten pounds too. His blood levels are almost normal and his scans showed very good shrinkage on the two nodules. The trial at Sloan Kettering has been delayed until February so we are paying for TDM1 ( a form of Herceptin- breast cancer drug)every three weeks because we think it's risky to wait. We are hoping that insurance will pick up some of the cost. Bill has gained back about four pounds and still has an amazingly upbeat attitude. I feel very blessed we have options and hopefully the drug will work.

      May all of you have the best holiday possible!

      Love,

      Maureen

       

      PS This post is in honor of Artie!!! May we always remember his courage and honesty!!! He will be deeply missed on this board!!

    Viewing 5 reply threads
    • Replies
        • December 12, 2015 at 1:56 am
        jamieth29
        Participant
          Maureen,
          Hope things go well for Bill. So is he joining a trial targeting the her-2?
          • December 12, 2015 at 1:56 am
          jamieth29
          Participant
            Maureen,
            Hope things go well for Bill. So is he joining a trial targeting the her-2?
              • December 12, 2015 at 11:29 am
              Maureen038
              Participant

                Thank you!! Unfortunately we didn't have many choices. One of the three specialists thought retrying Ipi while opdivo was in his system was a good choice but the other two specialists and our oncologist/hematologist thought it was very dangerous. Bill and I agreed with that. He could try another low dosage of DTIC but we also think that was dangerous too because of his incredibly low blood counts while on the drug, but Bill did get very good shrinkage on his two nodules. The only other choice in the melanoma drugs was to do TIL again and Bill felt it was a very draining experience and he didn't want to do it right now.

                We watched the show, The Emperor of all Maladies and we feel Sloan Kettering is being innovative by trying to find other mutations besides the typical melanoma ones. Her-2 mutation is a driving force in cancer growth and we are very hopeful it will make a difference. We are also praying that other new medicines for melanoma are developed. The interesting news we found out at Sloan Kettering is that they are working on T Vec being used surgically. That could be a game changer in the melanoma world, but I have no idea how long that would take to get FDA approval.Our prayers go all to all the courageous warriors and caregivers out there!!! Hang in there and keep fighting!!!

                Maureen 

                • December 13, 2015 at 2:35 am
                Momofjake
                Participant

                  Thank you Maureen!! You are an impressive caregiver and it seems like you and Bill have been a really strong team!! I hope we can keep these guys going!!

                  jake has done only keytruda outside of the crappy biochemo and radiation and he has tons of tumors everywhere in his body. We have had only one melanoma specialist see him from day one 15 months ago. Never another opinion!! I have talked to other doctors but we have never seen one!! I do have a full DNA report. Not just BRAF etc. he is BRAF mutated but others as well. I don't think he will do TIL due to the chemo. I worry he is on Artie's track. Artie said that too. That spine stuff. 

                  K. Gotta run. Re thinking our plan…but you have to wonder the value in living your life happy and normal all you can…right?

                  thanks!!

                  kerri

                  • December 14, 2015 at 12:26 pm
                  Maureen038
                  Participant

                    You are an amazing caregiver yourself Kerri!! I have three adult children myself and I can't imagine your pain and constant anguish. As a parent you always want to protect them and trade places with them when they are sick. I will keep you and your son in my prayers. Please try to take care of yourself too. I know myself the constant anxiety I have had since this awful disease entered our lives three and half years ago. I'm in a support group, I pray frequently and I exercise a lot. Yoga has been wonderful for me to try to stay calm. The only positive in this journey is the knowledge of what is truly important in life and the initamacy that occurs when life is precious. We have talked about everything important in our lives and that has brought us so much closer. When other people complain about things, it's so clear to us they are just trivial things. Life is truly a gift and make every day count as much as possible. Try to have fun even if you feel like crying on the inside. My husband has the most positive attitude and he inspires me to try my best to just take life a day at a time and have fun.

                    If you want a second opinion, there are some top melanoma specialists that return your email. Jeffery Weber is at NYU , but when he was at Moffitt he returned two of my emails with very helpful advice even though my husband was never a patient.Hopefully someone on the board knows his new email, but you could call NYU melanoma program and find out too. Dr. Rosenberg at NIH returns emails too at [email protected]. My advice to you is to try to get top melanoma specialists to give you advice. I'm constantly getting opinions from melanoma doctors and then Bill always makes the final decision because he is the patient and it's his life. Patrick Hwu at MD Anderson, Dr. Wolchok and Dr. Chapman at Sloan Kettering, and Dr. Keith Flaherty at Massachusetts General Hospital and Dr. Stephen Hodi. I'm sure there are more specialists so it just depends on where you live.

                    My only thought with your son's treatment is the possibility of adding Yervoy with the Keytruda. My only other suggestion is to look at TIL as an option. I'm wishing you and your son the best!! Take care.

                    Maureen

                     

                    • December 14, 2015 at 12:26 pm
                    Maureen038
                    Participant

                      You are an amazing caregiver yourself Kerri!! I have three adult children myself and I can't imagine your pain and constant anguish. As a parent you always want to protect them and trade places with them when they are sick. I will keep you and your son in my prayers. Please try to take care of yourself too. I know myself the constant anxiety I have had since this awful disease entered our lives three and half years ago. I'm in a support group, I pray frequently and I exercise a lot. Yoga has been wonderful for me to try to stay calm. The only positive in this journey is the knowledge of what is truly important in life and the initamacy that occurs when life is precious. We have talked about everything important in our lives and that has brought us so much closer. When other people complain about things, it's so clear to us they are just trivial things. Life is truly a gift and make every day count as much as possible. Try to have fun even if you feel like crying on the inside. My husband has the most positive attitude and he inspires me to try my best to just take life a day at a time and have fun.

                      If you want a second opinion, there are some top melanoma specialists that return your email. Jeffery Weber is at NYU , but when he was at Moffitt he returned two of my emails with very helpful advice even though my husband was never a patient.Hopefully someone on the board knows his new email, but you could call NYU melanoma program and find out too. Dr. Rosenberg at NIH returns emails too at [email protected]. My advice to you is to try to get top melanoma specialists to give you advice. I'm constantly getting opinions from melanoma doctors and then Bill always makes the final decision because he is the patient and it's his life. Patrick Hwu at MD Anderson, Dr. Wolchok and Dr. Chapman at Sloan Kettering, and Dr. Keith Flaherty at Massachusetts General Hospital and Dr. Stephen Hodi. I'm sure there are more specialists so it just depends on where you live.

                      My only thought with your son's treatment is the possibility of adding Yervoy with the Keytruda. My only other suggestion is to look at TIL as an option. I'm wishing you and your son the best!! Take care.

                      Maureen

                       

                      • December 14, 2015 at 12:26 pm
                      Maureen038
                      Participant

                        You are an amazing caregiver yourself Kerri!! I have three adult children myself and I can't imagine your pain and constant anguish. As a parent you always want to protect them and trade places with them when they are sick. I will keep you and your son in my prayers. Please try to take care of yourself too. I know myself the constant anxiety I have had since this awful disease entered our lives three and half years ago. I'm in a support group, I pray frequently and I exercise a lot. Yoga has been wonderful for me to try to stay calm. The only positive in this journey is the knowledge of what is truly important in life and the initamacy that occurs when life is precious. We have talked about everything important in our lives and that has brought us so much closer. When other people complain about things, it's so clear to us they are just trivial things. Life is truly a gift and make every day count as much as possible. Try to have fun even if you feel like crying on the inside. My husband has the most positive attitude and he inspires me to try my best to just take life a day at a time and have fun.

                        If you want a second opinion, there are some top melanoma specialists that return your email. Jeffery Weber is at NYU , but when he was at Moffitt he returned two of my emails with very helpful advice even though my husband was never a patient.Hopefully someone on the board knows his new email, but you could call NYU melanoma program and find out too. Dr. Rosenberg at NIH returns emails too at [email protected]. My advice to you is to try to get top melanoma specialists to give you advice. I'm constantly getting opinions from melanoma doctors and then Bill always makes the final decision because he is the patient and it's his life. Patrick Hwu at MD Anderson, Dr. Wolchok and Dr. Chapman at Sloan Kettering, and Dr. Keith Flaherty at Massachusetts General Hospital and Dr. Stephen Hodi. I'm sure there are more specialists so it just depends on where you live.

                        My only thought with your son's treatment is the possibility of adding Yervoy with the Keytruda. My only other suggestion is to look at TIL as an option. I'm wishing you and your son the best!! Take care.

                        Maureen

                         

                        • December 13, 2015 at 2:35 am
                        Momofjake
                        Participant

                          Thank you Maureen!! You are an impressive caregiver and it seems like you and Bill have been a really strong team!! I hope we can keep these guys going!!

                          jake has done only keytruda outside of the crappy biochemo and radiation and he has tons of tumors everywhere in his body. We have had only one melanoma specialist see him from day one 15 months ago. Never another opinion!! I have talked to other doctors but we have never seen one!! I do have a full DNA report. Not just BRAF etc. he is BRAF mutated but others as well. I don't think he will do TIL due to the chemo. I worry he is on Artie's track. Artie said that too. That spine stuff. 

                          K. Gotta run. Re thinking our plan…but you have to wonder the value in living your life happy and normal all you can…right?

                          thanks!!

                          kerri

                          • December 13, 2015 at 2:35 am
                          Momofjake
                          Participant

                            Thank you Maureen!! You are an impressive caregiver and it seems like you and Bill have been a really strong team!! I hope we can keep these guys going!!

                            jake has done only keytruda outside of the crappy biochemo and radiation and he has tons of tumors everywhere in his body. We have had only one melanoma specialist see him from day one 15 months ago. Never another opinion!! I have talked to other doctors but we have never seen one!! I do have a full DNA report. Not just BRAF etc. he is BRAF mutated but others as well. I don't think he will do TIL due to the chemo. I worry he is on Artie's track. Artie said that too. That spine stuff. 

                            K. Gotta run. Re thinking our plan…but you have to wonder the value in living your life happy and normal all you can…right?

                            thanks!!

                            kerri

                            • December 12, 2015 at 11:29 am
                            Maureen038
                            Participant

                              Thank you!! Unfortunately we didn't have many choices. One of the three specialists thought retrying Ipi while opdivo was in his system was a good choice but the other two specialists and our oncologist/hematologist thought it was very dangerous. Bill and I agreed with that. He could try another low dosage of DTIC but we also think that was dangerous too because of his incredibly low blood counts while on the drug, but Bill did get very good shrinkage on his two nodules. The only other choice in the melanoma drugs was to do TIL again and Bill felt it was a very draining experience and he didn't want to do it right now.

                              We watched the show, The Emperor of all Maladies and we feel Sloan Kettering is being innovative by trying to find other mutations besides the typical melanoma ones. Her-2 mutation is a driving force in cancer growth and we are very hopeful it will make a difference. We are also praying that other new medicines for melanoma are developed. The interesting news we found out at Sloan Kettering is that they are working on T Vec being used surgically. That could be a game changer in the melanoma world, but I have no idea how long that would take to get FDA approval.Our prayers go all to all the courageous warriors and caregivers out there!!! Hang in there and keep fighting!!!

                              Maureen 

                              • December 12, 2015 at 11:29 am
                              Maureen038
                              Participant

                                Thank you!! Unfortunately we didn't have many choices. One of the three specialists thought retrying Ipi while opdivo was in his system was a good choice but the other two specialists and our oncologist/hematologist thought it was very dangerous. Bill and I agreed with that. He could try another low dosage of DTIC but we also think that was dangerous too because of his incredibly low blood counts while on the drug, but Bill did get very good shrinkage on his two nodules. The only other choice in the melanoma drugs was to do TIL again and Bill felt it was a very draining experience and he didn't want to do it right now.

                                We watched the show, The Emperor of all Maladies and we feel Sloan Kettering is being innovative by trying to find other mutations besides the typical melanoma ones. Her-2 mutation is a driving force in cancer growth and we are very hopeful it will make a difference. We are also praying that other new medicines for melanoma are developed. The interesting news we found out at Sloan Kettering is that they are working on T Vec being used surgically. That could be a game changer in the melanoma world, but I have no idea how long that would take to get FDA approval.Our prayers go all to all the courageous warriors and caregivers out there!!! Hang in there and keep fighting!!!

                                Maureen 

                              • December 12, 2015 at 1:56 am
                              jamieth29
                              Participant
                                Maureen,
                                Hope things go well for Bill. So is he joining a trial targeting the her-2?
                                • December 14, 2015 at 12:29 am
                                BrianP
                                Participant

                                  Hello Maureen,

                                  Thanks for your update.  What a roller coaster you and Bill have been on.  You guys are an amazing team.  It's incredible how well you all have navigated the rough waters you've been put in.  I'm glad to hear there has been a trend in the right direction as of late for Bill.  Hopefully that will continue.  It does sound like you are at the best place you can be right now. 

                                  Take care,

                                  Brian

                                    • December 14, 2015 at 12:31 pm
                                    Maureen038
                                    Participant

                                      Thanks so much Brian!! I'm so happy for you and your family that you are in a stable position. Are you going to have surgery? 

                                      Im very grateful for you, Celeste and other people on this board that constantly give great advice in a caring way!!! Have a wonderful holiday!!

                                      Maureen

                                      • December 14, 2015 at 12:31 pm
                                      Maureen038
                                      Participant

                                        Thanks so much Brian!! I'm so happy for you and your family that you are in a stable position. Are you going to have surgery? 

                                        Im very grateful for you, Celeste and other people on this board that constantly give great advice in a caring way!!! Have a wonderful holiday!!

                                        Maureen

                                        • December 14, 2015 at 5:27 pm
                                        BrianP
                                        Participant

                                          I'm still considering the surgery and still leaning that way.  I'm kind of in a rare situation in melamoma where I don't feel like it's an urgent decision but I do want to make it soon because it is weighing on me constantly.  Just got results back last week from my PET and there is still no uptake anywhere. 

                                          Who are you seeing at MSK?  If I was to go up there for a consult on my situation is there anyone you would recommend?

                                          Hope you and Bill have a wonderful holiday as well! 

                                           

                                           

                                           

                                          • December 14, 2015 at 5:27 pm
                                          BrianP
                                          Participant

                                            I'm still considering the surgery and still leaning that way.  I'm kind of in a rare situation in melamoma where I don't feel like it's an urgent decision but I do want to make it soon because it is weighing on me constantly.  Just got results back last week from my PET and there is still no uptake anywhere. 

                                            Who are you seeing at MSK?  If I was to go up there for a consult on my situation is there anyone you would recommend?

                                            Hope you and Bill have a wonderful holiday as well! 

                                             

                                             

                                             

                                            • December 14, 2015 at 8:56 pm
                                            Maureen038
                                            Participant

                                              I wish you all the best Brian!! We see Alex Shoushtari who works under Dr. Chapman. His office phone number is 646-888-4161. He's very impressive as is Dr. Chapman who we also saw. We would have liked to have seen Dr. Wolchok but because we got an appointment in a month it would have been impossible to see him. Bill and I think they are trying very innovative approaches there. Have a wonderful holiday with your family!!!

                                              Maureen

                                              • December 14, 2015 at 8:56 pm
                                              Maureen038
                                              Participant

                                                I wish you all the best Brian!! We see Alex Shoushtari who works under Dr. Chapman. His office phone number is 646-888-4161. He's very impressive as is Dr. Chapman who we also saw. We would have liked to have seen Dr. Wolchok but because we got an appointment in a month it would have been impossible to see him. Bill and I think they are trying very innovative approaches there. Have a wonderful holiday with your family!!!

                                                Maureen

                                                • December 14, 2015 at 8:56 pm
                                                Maureen038
                                                Participant

                                                  I wish you all the best Brian!! We see Alex Shoushtari who works under Dr. Chapman. His office phone number is 646-888-4161. He's very impressive as is Dr. Chapman who we also saw. We would have liked to have seen Dr. Wolchok but because we got an appointment in a month it would have been impossible to see him. Bill and I think they are trying very innovative approaches there. Have a wonderful holiday with your family!!!

                                                  Maureen

                                                  • December 14, 2015 at 5:27 pm
                                                  BrianP
                                                  Participant

                                                    I'm still considering the surgery and still leaning that way.  I'm kind of in a rare situation in melamoma where I don't feel like it's an urgent decision but I do want to make it soon because it is weighing on me constantly.  Just got results back last week from my PET and there is still no uptake anywhere. 

                                                    Who are you seeing at MSK?  If I was to go up there for a consult on my situation is there anyone you would recommend?

                                                    Hope you and Bill have a wonderful holiday as well! 

                                                     

                                                     

                                                     

                                                    • December 14, 2015 at 12:31 pm
                                                    Maureen038
                                                    Participant

                                                      Thanks so much Brian!! I'm so happy for you and your family that you are in a stable position. Are you going to have surgery? 

                                                      Im very grateful for you, Celeste and other people on this board that constantly give great advice in a caring way!!! Have a wonderful holiday!!

                                                      Maureen

                                                    • December 14, 2015 at 12:29 am
                                                    BrianP
                                                    Participant

                                                      Hello Maureen,

                                                      Thanks for your update.  What a roller coaster you and Bill have been on.  You guys are an amazing team.  It's incredible how well you all have navigated the rough waters you've been put in.  I'm glad to hear there has been a trend in the right direction as of late for Bill.  Hopefully that will continue.  It does sound like you are at the best place you can be right now. 

                                                      Take care,

                                                      Brian

                                                      • December 14, 2015 at 12:29 am
                                                      BrianP
                                                      Participant

                                                        Hello Maureen,

                                                        Thanks for your update.  What a roller coaster you and Bill have been on.  You guys are an amazing team.  It's incredible how well you all have navigated the rough waters you've been put in.  I'm glad to hear there has been a trend in the right direction as of late for Bill.  Hopefully that will continue.  It does sound like you are at the best place you can be right now. 

                                                        Take care,

                                                        Brian

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