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starting MK-3475 after ipi/Yervoy

Forums General Melanoma Community starting MK-3475 after ipi/Yervoy

  • Post
    phtreehuggr
    Participant

      My mom is starting MK-3475 on Tuesday after no success with Yervoy.

      Matted nodes removed mid-February 2014. They had to leave a small piece on her vein so as no to compromise the vein/leg.

      Lymphodema of her leg and extreme swelling of her abdomen. Fatigue, sleep deprived, can't get comfy, swollen stomach causing loss of appetite and nausea. Scan Last Friday shows cancer moved to nodes in stomach, hence the fluid in her belly. Brain scan negative.

      Starting MK-3475 on Tuesday. I'm not sure what to expect.

      Doctor stated that if she waited and gave the Yervoy more time to work that she could find herself bed ridden with organ failure in a couple short weeks. This seems to be her only chance.

      I can't seem to find anything definitive on what her chances are with this trial drug. It's now an expanded access protocol, so we do know that she won't get the placebo.

      Does anyone know where I can find anything that outlines the effectiveness of MK-3475? I know there is no black-and-white here, but I just need something, anything, at this point.

      We are all a mess. Worst nightmare. There is no other way to say it. Watching the most important person in your life go through something like this is beyond heartbreaking. Watching my parents cope with it, together, is beautiful and also so incredibly sad. My mom is such an amazingly strong and profound life force to SO many people. I am still in denial and coping – if you can call it that – poorly. I don't even know where to begin.

    Viewing 8 reply threads
    • Replies
        RJoeyB
        Participant

          I'm so sorry to hear about your mom's struggles and wish you and your family much strength and encouragement as you continue to fight.

          I just saw this article come through my "filters" just yesterday, originally published in Lancet and then posted on Medscape.com, covering what I think you're asking about (note:  "pembrolizumab" is Merck's new name for MK-3475):

          Pembrolizumab Works in Melanoma After Ipilimumab
          http://www.medscape.com/viewarticle/828738

          I hope you find it useful. You may need to register for the site to read the article, but registration is free.  I don't know the rules or copyright issues of copying and pasting the entire contents here.

          There is a lot of information in the article, but it's important to see that although both drugs are in the class of "immune checkpoint inhibitors", success or failure with one doesn't always translate into success or failure with the other.

          Wishing you the best,
          Joe

           

          RJoeyB
          Participant

            I'm so sorry to hear about your mom's struggles and wish you and your family much strength and encouragement as you continue to fight.

            I just saw this article come through my "filters" just yesterday, originally published in Lancet and then posted on Medscape.com, covering what I think you're asking about (note:  "pembrolizumab" is Merck's new name for MK-3475):

            Pembrolizumab Works in Melanoma After Ipilimumab
            http://www.medscape.com/viewarticle/828738

            I hope you find it useful. You may need to register for the site to read the article, but registration is free.  I don't know the rules or copyright issues of copying and pasting the entire contents here.

            There is a lot of information in the article, but it's important to see that although both drugs are in the class of "immune checkpoint inhibitors", success or failure with one doesn't always translate into success or failure with the other.

            Wishing you the best,
            Joe

             

            RJoeyB
            Participant

              I'm so sorry to hear about your mom's struggles and wish you and your family much strength and encouragement as you continue to fight.

              I just saw this article come through my "filters" just yesterday, originally published in Lancet and then posted on Medscape.com, covering what I think you're asking about (note:  "pembrolizumab" is Merck's new name for MK-3475):

              Pembrolizumab Works in Melanoma After Ipilimumab
              http://www.medscape.com/viewarticle/828738

              I hope you find it useful. You may need to register for the site to read the article, but registration is free.  I don't know the rules or copyright issues of copying and pasting the entire contents here.

              There is a lot of information in the article, but it's important to see that although both drugs are in the class of "immune checkpoint inhibitors", success or failure with one doesn't always translate into success or failure with the other.

              Wishing you the best,
              Joe

               

              ed williams
              Participant

                Dear Anonymous, the Dr. that is involved in talking about MK-3475 is Dr.Ribas at UCLA. He has a couple of video on youtube where he talks about PD-1 drugs and Immunotherapy in general. If you go to the post from Tim of MRF on this forum, dated 7/10/2014 you can get some more ideas. I posted on that date with some of the other names and video that are current. ASCO videos from 2014 and 2013 are good sources. One last video that has Dr.Ribas talking to Dr.Jeffrey Weber about the 2014 ASCO summary is excellent, it is harder to find, you have to go to Med Scape and join (Free) search for video called "Pretty Darn Impressive PD-1 Data in Melanoma" it is about 18 min long. Hope this helps. Ed

                  shanemcdonald99
                  Participant

                    I have heard that they are having excellent results with that drug.

                    In a recent clinical trial, they were having such good results, that they ended the trial early and put the patients receiving the placebo on the drug.

                    The article was posted here a few weeks ago.

                     

                    You can have hope and look forward to it working.

                     

                    Bristol Meyers Suibb has a similar drug Nivolumab that they also had great results with. Especially when used with Yervoy.

                     

                    best regards

                    shane

                    shanemcdonald99
                    Participant

                      I have heard that they are having excellent results with that drug.

                      In a recent clinical trial, they were having such good results, that they ended the trial early and put the patients receiving the placebo on the drug.

                      The article was posted here a few weeks ago.

                       

                      You can have hope and look forward to it working.

                       

                      Bristol Meyers Suibb has a similar drug Nivolumab that they also had great results with. Especially when used with Yervoy.

                       

                      best regards

                      shane

                      shanemcdonald99
                      Participant

                        I have heard that they are having excellent results with that drug.

                        In a recent clinical trial, they were having such good results, that they ended the trial early and put the patients receiving the placebo on the drug.

                        The article was posted here a few weeks ago.

                         

                        You can have hope and look forward to it working.

                         

                        Bristol Meyers Suibb has a similar drug Nivolumab that they also had great results with. Especially when used with Yervoy.

                         

                        best regards

                        shane

                      ed williams
                      Participant

                        Dear Anonymous, the Dr. that is involved in talking about MK-3475 is Dr.Ribas at UCLA. He has a couple of video on youtube where he talks about PD-1 drugs and Immunotherapy in general. If you go to the post from Tim of MRF on this forum, dated 7/10/2014 you can get some more ideas. I posted on that date with some of the other names and video that are current. ASCO videos from 2014 and 2013 are good sources. One last video that has Dr.Ribas talking to Dr.Jeffrey Weber about the 2014 ASCO summary is excellent, it is harder to find, you have to go to Med Scape and join (Free) search for video called "Pretty Darn Impressive PD-1 Data in Melanoma" it is about 18 min long. Hope this helps. Ed

                        ed williams
                        Participant

                          Dear Anonymous, the Dr. that is involved in talking about MK-3475 is Dr.Ribas at UCLA. He has a couple of video on youtube where he talks about PD-1 drugs and Immunotherapy in general. If you go to the post from Tim of MRF on this forum, dated 7/10/2014 you can get some more ideas. I posted on that date with some of the other names and video that are current. ASCO videos from 2014 and 2013 are good sources. One last video that has Dr.Ribas talking to Dr.Jeffrey Weber about the 2014 ASCO summary is excellent, it is harder to find, you have to go to Med Scape and join (Free) search for video called "Pretty Darn Impressive PD-1 Data in Melanoma" it is about 18 min long. Hope this helps. Ed

                          Bubbles
                          Participant

                            Dear Anon,

                            I completed a 2 1/2 year trial with Nivolumab (the BMS anti-PD1 product).  Here is a link to a blog post I put together about it and Pembro:

                            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

                            Here is a link to my blog post about the "Pretty Darn Impressive" article Ed referred to.  It has my synopsis and an easy direct link to the conversation as well.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/pretty-darn-impressivea-chat-between.html

                            I think you and your mom have cause to hope. Hang in there.  Celeste

                            Bubbles
                            Participant

                              Dear Anon,

                              I completed a 2 1/2 year trial with Nivolumab (the BMS anti-PD1 product).  Here is a link to a blog post I put together about it and Pembro:

                              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

                              Here is a link to my blog post about the "Pretty Darn Impressive" article Ed referred to.  It has my synopsis and an easy direct link to the conversation as well.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/pretty-darn-impressivea-chat-between.html

                              I think you and your mom have cause to hope. Hang in there.  Celeste

                              Bubbles
                              Participant

                                Dear Anon,

                                I completed a 2 1/2 year trial with Nivolumab (the BMS anti-PD1 product).  Here is a link to a blog post I put together about it and Pembro:

                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

                                Here is a link to my blog post about the "Pretty Darn Impressive" article Ed referred to.  It has my synopsis and an easy direct link to the conversation as well.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/pretty-darn-impressivea-chat-between.html

                                I think you and your mom have cause to hope. Hang in there.  Celeste

                                  ed williams
                                  Participant

                                    Thanks Bubbles for putting the link up to the video. I wish I had your computer skills. Listening to Dr.Ribas speak about how great the future looks for Immunotherapies is very up lifting. I have been on the BMS radomized double blind study of Nivo and Ipi since January). Ed

                                    ed williams
                                    Participant

                                      Thanks Bubbles for putting the link up to the video. I wish I had your computer skills. Listening to Dr.Ribas speak about how great the future looks for Immunotherapies is very up lifting. I have been on the BMS radomized double blind study of Nivo and Ipi since January). Ed

                                      Bubbles
                                      Participant

                                        No problem, Ed. It IS uplifting to hear Weber and Ribas speak in those terms!! Good luck in your trial!! C

                                        Bubbles
                                        Participant

                                          No problem, Ed. It IS uplifting to hear Weber and Ribas speak in those terms!! Good luck in your trial!! C

                                          Bubbles
                                          Participant

                                            No problem, Ed. It IS uplifting to hear Weber and Ribas speak in those terms!! Good luck in your trial!! C

                                            phtreehuggr
                                            Participant

                                              Thank you, all!

                                              So, she went to go get her tummy tapped to remove the fluid…and NO FLUID! What is it?! I have a call into her doctor to pick his brain.

                                              Honestly, I don't feel like there is much time. My dad had me put a call into the doctor to inquire about MK-3475 vs interleukin. The latter seems like some pretty scary stuff. We don't know what to do! We don't know which to go with. My dad is losing it. Total mess. Mom is relying on him to make decisions and he's relying on input from me and I'm like…afjsdocjmsdlkcmsdop! I have NO IDEA.

                                              This is the pits.

                                              Thanks again, all!

                                              phtreehuggr
                                              Participant

                                                Thank you, all!

                                                So, she went to go get her tummy tapped to remove the fluid…and NO FLUID! What is it?! I have a call into her doctor to pick his brain.

                                                Honestly, I don't feel like there is much time. My dad had me put a call into the doctor to inquire about MK-3475 vs interleukin. The latter seems like some pretty scary stuff. We don't know what to do! We don't know which to go with. My dad is losing it. Total mess. Mom is relying on him to make decisions and he's relying on input from me and I'm like…afjsdocjmsdlkcmsdop! I have NO IDEA.

                                                This is the pits.

                                                Thanks again, all!

                                                phtreehuggr
                                                Participant

                                                  Thank you, all!

                                                  So, she went to go get her tummy tapped to remove the fluid…and NO FLUID! What is it?! I have a call into her doctor to pick his brain.

                                                  Honestly, I don't feel like there is much time. My dad had me put a call into the doctor to inquire about MK-3475 vs interleukin. The latter seems like some pretty scary stuff. We don't know what to do! We don't know which to go with. My dad is losing it. Total mess. Mom is relying on him to make decisions and he's relying on input from me and I'm like…afjsdocjmsdlkcmsdop! I have NO IDEA.

                                                  This is the pits.

                                                  Thanks again, all!

                                                  OzzieK
                                                  Participant

                                                    I'm SO sorry that you're going through this. I can totally emphathize. I'm there too, to some degree. My dad was diagnosed with melanoma earlier this year and since then we have all been on a rollercoaster ride of emotions and uncertainty. It totally and completely sucks. BIG HUGS!!!!

                                                    OzzieK
                                                    Participant

                                                      I'm SO sorry that you're going through this. I can totally emphathize. I'm there too, to some degree. My dad was diagnosed with melanoma earlier this year and since then we have all been on a rollercoaster ride of emotions and uncertainty. It totally and completely sucks. BIG HUGS!!!!

                                                      OzzieK
                                                      Participant

                                                        I'm SO sorry that you're going through this. I can totally emphathize. I'm there too, to some degree. My dad was diagnosed with melanoma earlier this year and since then we have all been on a rollercoaster ride of emotions and uncertainty. It totally and completely sucks. BIG HUGS!!!!

                                                        RJoeyB
                                                        Participant

                                                          I'm sorry to hear about your mom and can both hear and understand to your frustration.  I've received three different immunotherapies as part of a clinical trial and then standard treatment:  Interleukin-2 (IL-2), TIL, and ipilimumab/Yervoy.  I have not received MK-3475, a.k.a. pembrolizumab, but since you mention Interleukin, wanted to share my experience.

                                                          Actually, more important than my own experience is the fact that MK-3475 has been proving far and away to be so much more effective than Interleukin-2 by almost any measure.  That alone should have you focused on it, especially if you are in a position to have your mom eligible to receive it through a trial, EAP, or whatever.

                                                          I received Interleukin-2 in 2010-11.  Since I've received subsequent treatments, I'll never know for sure if it's played some role in keeping me here four years later.  It was a tough treatment at the most difficult time of my life, one of the toughest things I've ever done.  I do not regret doing it, and would do it again if I had to.  However, given the opportunity to use an anti-PD-1 like MK-3475 with all that's been learned since then, Interleukin-2 would be way down my list right now.

                                                          Joe

                                                           

                                                          RJoeyB
                                                          Participant

                                                            I'm sorry to hear about your mom and can both hear and understand to your frustration.  I've received three different immunotherapies as part of a clinical trial and then standard treatment:  Interleukin-2 (IL-2), TIL, and ipilimumab/Yervoy.  I have not received MK-3475, a.k.a. pembrolizumab, but since you mention Interleukin, wanted to share my experience.

                                                            Actually, more important than my own experience is the fact that MK-3475 has been proving far and away to be so much more effective than Interleukin-2 by almost any measure.  That alone should have you focused on it, especially if you are in a position to have your mom eligible to receive it through a trial, EAP, or whatever.

                                                            I received Interleukin-2 in 2010-11.  Since I've received subsequent treatments, I'll never know for sure if it's played some role in keeping me here four years later.  It was a tough treatment at the most difficult time of my life, one of the toughest things I've ever done.  I do not regret doing it, and would do it again if I had to.  However, given the opportunity to use an anti-PD-1 like MK-3475 with all that's been learned since then, Interleukin-2 would be way down my list right now.

                                                            Joe

                                                             

                                                            phtreehuggr
                                                            Participant

                                                              Well, I'm back, and this time not anonoymously because my mom no longer checks her phone, let alone the internet.

                                                              We don't know what's going on. The doctor in charge of the trial has said after her first treatment, that if it didn't work within the first 3 weeks (she said it would take 3-8 weeks), that my mom probably wouldn't make it to the next treatment. She did. She had her 2nd MK infusion last week, so she's now 5 weeks on the MK. Still no signs of improvement. When she saw her again at the 3 week mark, she said "days slash weeks."

                                                              Her abdomen is the size of – at least – a full term pregmant woman because the cancer has invaded her nodes in her belly and her bowels etc. are distended. Her fluids aren't be distributed as a result so her legs up to her waist is giant. I push the fluid up her legs to her nearest working nodes the best I can and then wrap them, but that doesn't seem to do much anymore. But her arms, chest, neck and face is…just skin stretched over her bones.

                                                              Her pain is managed. She has bouts of nausea. She's taking hemp oil regularly which my dad has done a ton of research on and is kind of our last ditch effort since there isn't anything else left to do. She is not strong enough for the interleukin. Thanks to the hemp oil she is taking down regular amounts of food again and isn't throwing up as frequently.

                                                              She sleeps all the time. I'm not sure if that's a result of the meds, the advanced cancer or the pain meds and hemp oil. It could just be that she's nearing the end, but it's hard to gague. She has taken to mumbling in her sleep a lot. Hard to wake. Has lucid moments still.

                                                              I don't know, I guess I just need to get it all out. There is nothing I can say except that this is the absolute worst possible thing to watch your loved one go through. I read somewhere on a different forum that at some point your wish will shift from her getting better, to finding peace, and I remember thinking when I read it that, that I'd never think that. But now as I sit here writing this, I think, if she isn't going to get better, I just want her to stop suffering.

                                                              JustMeInCA
                                                              Participant

                                                                I'm so very sorry to hear about your mom. I actually just created an account so that I could respond to you. I cannot truly empathize because I'm not yet at that point with my dad, but I can certainly understand your fear and your pain as you watch your mom suffer because that has been my biggest fear since finding out my father's melanoma had metastasized a few weeks ago. 

                                                                I'm the only child, and my mom passed away unexpectedly in her sleep about 3.5 years ago, so back home with Dad I moved since losing my mom had left him utterly lost. He also depends on me to make decisions about the best way to proceed, so I do understand what a heavy burden you've carried. Although my mom's death was a complete shock, I pray every night now that my father will be lucky enough to also have such a quick, peaceful death.

                                                                One thing I can tell you is that I've spoken many times to an old friend who lost both her parents to cancer within a year of each other. She has promised me that as painful as the process is, we will come out on the other so thankful for being given the opportunity to show our parents such love and comfort during this time. I don't know how I'll be strong enough to do it, but I know that when the time comes, I will be, just as you are now. Another thing she told me is to keep talking and keep laughing. She said that both of her parents laughed right up to the end. 

                                                                There isn't much that I can say to offer you comfort. Just know that you aren't alone. I truly am sending you virtual hugs and lots of strength tonight. I hope that it still might be possible for those drugs to kick in and turn things around, but I think you're absolutely right that there must come a point when our hope must be to see the suffering end. Take care of your dad as well. I never quite  managed to stay married, but I know from my own father's experience that losing a life partner is incredibly difficult, particularly for men.

                                                                Just do the best you can. I'll keep you in my thoughts.

                                                                Elaine

                                                                phtreehuggr
                                                                Participant

                                                                  Elaine,

                                                                  I came back on here to get details from my posts to support a blog that I'm putting together. It's my personal journaling through my mom's diagnosis up until now. It's not written beautifully, but if it can help comfort one person it's worth writing it all out again!

                                                                  So I'm just seeing this now! I cried when I read your post. My mom died 3 days after you posted. She died with my dad and me holding her hands, in her home.

                                                                  You're absolutely right. I am gateful I had the opportunity to show her how much I love her through my care for her during that time. Somehow you just do it. When you're in the thick of it the weighty emotions don't really surface; it's not until you get a little downtime that it all creeps in.

                                                                  Unfortunately we didn't get many smiles and laughs. My mom retreated within herself the last couple of months. She didn't have much to say. She only spoke out of necesscity. I think she was really struggling with accepting what was happening to her, and I also think she tried to prevent us from having many memories of her in that condition. It really bugged her when her mom went through pancreatic cancer –she didn't want to remember her mom that way.

                                                                  I miss her a lot. That will never stop. The intensity of the sadness I feel is still the same as it always was, but the moments that the sadness hits is less frequent as time goes on.

                                                                  How are you? How is your dad? Did they do treatments? I hope he made it! I've heard of others making it through it, even at stage IV, and they're still alive. That always gave me hope for my mama.

                                                                  Katie

                                                                   

                                                                  phtreehuggr
                                                                  Participant

                                                                    Elaine,

                                                                    I came back on here to get details from my posts to support a blog that I'm putting together. It's my personal journaling through my mom's diagnosis up until now. It's not written beautifully, but if it can help comfort one person it's worth writing it all out again!

                                                                    So I'm just seeing this now! I cried when I read your post. My mom died 3 days after you posted. She died with my dad and me holding her hands, in her home.

                                                                    You're absolutely right. I am gateful I had the opportunity to show her how much I love her through my care for her during that time. Somehow you just do it. When you're in the thick of it the weighty emotions don't really surface; it's not until you get a little downtime that it all creeps in.

                                                                    Unfortunately we didn't get many smiles and laughs. My mom retreated within herself the last couple of months. She didn't have much to say. She only spoke out of necesscity. I think she was really struggling with accepting what was happening to her, and I also think she tried to prevent us from having many memories of her in that condition. It really bugged her when her mom went through pancreatic cancer –she didn't want to remember her mom that way.

                                                                    I miss her a lot. That will never stop. The intensity of the sadness I feel is still the same as it always was, but the moments that the sadness hits is less frequent as time goes on.

                                                                    How are you? How is your dad? Did they do treatments? I hope he made it! I've heard of others making it through it, even at stage IV, and they're still alive. That always gave me hope for my mama.

                                                                    Katie

                                                                     

                                                                    phtreehuggr
                                                                    Participant

                                                                      Elaine,

                                                                      I came back on here to get details from my posts to support a blog that I'm putting together. It's my personal journaling through my mom's diagnosis up until now. It's not written beautifully, but if it can help comfort one person it's worth writing it all out again!

                                                                      So I'm just seeing this now! I cried when I read your post. My mom died 3 days after you posted. She died with my dad and me holding her hands, in her home.

                                                                      You're absolutely right. I am gateful I had the opportunity to show her how much I love her through my care for her during that time. Somehow you just do it. When you're in the thick of it the weighty emotions don't really surface; it's not until you get a little downtime that it all creeps in.

                                                                      Unfortunately we didn't get many smiles and laughs. My mom retreated within herself the last couple of months. She didn't have much to say. She only spoke out of necesscity. I think she was really struggling with accepting what was happening to her, and I also think she tried to prevent us from having many memories of her in that condition. It really bugged her when her mom went through pancreatic cancer –she didn't want to remember her mom that way.

                                                                      I miss her a lot. That will never stop. The intensity of the sadness I feel is still the same as it always was, but the moments that the sadness hits is less frequent as time goes on.

                                                                      How are you? How is your dad? Did they do treatments? I hope he made it! I've heard of others making it through it, even at stage IV, and they're still alive. That always gave me hope for my mama.

                                                                      Katie

                                                                       

                                                                      JustMeInCA
                                                                      Participant

                                                                        I'm so very sorry to hear about your mom. I actually just created an account so that I could respond to you. I cannot truly empathize because I'm not yet at that point with my dad, but I can certainly understand your fear and your pain as you watch your mom suffer because that has been my biggest fear since finding out my father's melanoma had metastasized a few weeks ago. 

                                                                        I'm the only child, and my mom passed away unexpectedly in her sleep about 3.5 years ago, so back home with Dad I moved since losing my mom had left him utterly lost. He also depends on me to make decisions about the best way to proceed, so I do understand what a heavy burden you've carried. Although my mom's death was a complete shock, I pray every night now that my father will be lucky enough to also have such a quick, peaceful death.

                                                                        One thing I can tell you is that I've spoken many times to an old friend who lost both her parents to cancer within a year of each other. She has promised me that as painful as the process is, we will come out on the other so thankful for being given the opportunity to show our parents such love and comfort during this time. I don't know how I'll be strong enough to do it, but I know that when the time comes, I will be, just as you are now. Another thing she told me is to keep talking and keep laughing. She said that both of her parents laughed right up to the end. 

                                                                        There isn't much that I can say to offer you comfort. Just know that you aren't alone. I truly am sending you virtual hugs and lots of strength tonight. I hope that it still might be possible for those drugs to kick in and turn things around, but I think you're absolutely right that there must come a point when our hope must be to see the suffering end. Take care of your dad as well. I never quite  managed to stay married, but I know from my own father's experience that losing a life partner is incredibly difficult, particularly for men.

                                                                        Just do the best you can. I'll keep you in my thoughts.

                                                                        Elaine

                                                                        JustMeInCA
                                                                        Participant

                                                                          I'm so very sorry to hear about your mom. I actually just created an account so that I could respond to you. I cannot truly empathize because I'm not yet at that point with my dad, but I can certainly understand your fear and your pain as you watch your mom suffer because that has been my biggest fear since finding out my father's melanoma had metastasized a few weeks ago. 

                                                                          I'm the only child, and my mom passed away unexpectedly in her sleep about 3.5 years ago, so back home with Dad I moved since losing my mom had left him utterly lost. He also depends on me to make decisions about the best way to proceed, so I do understand what a heavy burden you've carried. Although my mom's death was a complete shock, I pray every night now that my father will be lucky enough to also have such a quick, peaceful death.

                                                                          One thing I can tell you is that I've spoken many times to an old friend who lost both her parents to cancer within a year of each other. She has promised me that as painful as the process is, we will come out on the other so thankful for being given the opportunity to show our parents such love and comfort during this time. I don't know how I'll be strong enough to do it, but I know that when the time comes, I will be, just as you are now. Another thing she told me is to keep talking and keep laughing. She said that both of her parents laughed right up to the end. 

                                                                          There isn't much that I can say to offer you comfort. Just know that you aren't alone. I truly am sending you virtual hugs and lots of strength tonight. I hope that it still might be possible for those drugs to kick in and turn things around, but I think you're absolutely right that there must come a point when our hope must be to see the suffering end. Take care of your dad as well. I never quite  managed to stay married, but I know from my own father's experience that losing a life partner is incredibly difficult, particularly for men.

                                                                          Just do the best you can. I'll keep you in my thoughts.

                                                                          Elaine

                                                                          phtreehuggr
                                                                          Participant

                                                                            Well, I'm back, and this time not anonoymously because my mom no longer checks her phone, let alone the internet.

                                                                            We don't know what's going on. The doctor in charge of the trial has said after her first treatment, that if it didn't work within the first 3 weeks (she said it would take 3-8 weeks), that my mom probably wouldn't make it to the next treatment. She did. She had her 2nd MK infusion last week, so she's now 5 weeks on the MK. Still no signs of improvement. When she saw her again at the 3 week mark, she said "days slash weeks."

                                                                            Her abdomen is the size of – at least – a full term pregmant woman because the cancer has invaded her nodes in her belly and her bowels etc. are distended. Her fluids aren't be distributed as a result so her legs up to her waist is giant. I push the fluid up her legs to her nearest working nodes the best I can and then wrap them, but that doesn't seem to do much anymore. But her arms, chest, neck and face is…just skin stretched over her bones.

                                                                            Her pain is managed. She has bouts of nausea. She's taking hemp oil regularly which my dad has done a ton of research on and is kind of our last ditch effort since there isn't anything else left to do. She is not strong enough for the interleukin. Thanks to the hemp oil she is taking down regular amounts of food again and isn't throwing up as frequently.

                                                                            She sleeps all the time. I'm not sure if that's a result of the meds, the advanced cancer or the pain meds and hemp oil. It could just be that she's nearing the end, but it's hard to gague. She has taken to mumbling in her sleep a lot. Hard to wake. Has lucid moments still.

                                                                            I don't know, I guess I just need to get it all out. There is nothing I can say except that this is the absolute worst possible thing to watch your loved one go through. I read somewhere on a different forum that at some point your wish will shift from her getting better, to finding peace, and I remember thinking when I read it that, that I'd never think that. But now as I sit here writing this, I think, if she isn't going to get better, I just want her to stop suffering.

                                                                            phtreehuggr
                                                                            Participant

                                                                              Well, I'm back, and this time not anonoymously because my mom no longer checks her phone, let alone the internet.

                                                                              We don't know what's going on. The doctor in charge of the trial has said after her first treatment, that if it didn't work within the first 3 weeks (she said it would take 3-8 weeks), that my mom probably wouldn't make it to the next treatment. She did. She had her 2nd MK infusion last week, so she's now 5 weeks on the MK. Still no signs of improvement. When she saw her again at the 3 week mark, she said "days slash weeks."

                                                                              Her abdomen is the size of – at least – a full term pregmant woman because the cancer has invaded her nodes in her belly and her bowels etc. are distended. Her fluids aren't be distributed as a result so her legs up to her waist is giant. I push the fluid up her legs to her nearest working nodes the best I can and then wrap them, but that doesn't seem to do much anymore. But her arms, chest, neck and face is…just skin stretched over her bones.

                                                                              Her pain is managed. She has bouts of nausea. She's taking hemp oil regularly which my dad has done a ton of research on and is kind of our last ditch effort since there isn't anything else left to do. She is not strong enough for the interleukin. Thanks to the hemp oil she is taking down regular amounts of food again and isn't throwing up as frequently.

                                                                              She sleeps all the time. I'm not sure if that's a result of the meds, the advanced cancer or the pain meds and hemp oil. It could just be that she's nearing the end, but it's hard to gague. She has taken to mumbling in her sleep a lot. Hard to wake. Has lucid moments still.

                                                                              I don't know, I guess I just need to get it all out. There is nothing I can say except that this is the absolute worst possible thing to watch your loved one go through. I read somewhere on a different forum that at some point your wish will shift from her getting better, to finding peace, and I remember thinking when I read it that, that I'd never think that. But now as I sit here writing this, I think, if she isn't going to get better, I just want her to stop suffering.

                                                                              RJoeyB
                                                                              Participant

                                                                                I'm sorry to hear about your mom and can both hear and understand to your frustration.  I've received three different immunotherapies as part of a clinical trial and then standard treatment:  Interleukin-2 (IL-2), TIL, and ipilimumab/Yervoy.  I have not received MK-3475, a.k.a. pembrolizumab, but since you mention Interleukin, wanted to share my experience.

                                                                                Actually, more important than my own experience is the fact that MK-3475 has been proving far and away to be so much more effective than Interleukin-2 by almost any measure.  That alone should have you focused on it, especially if you are in a position to have your mom eligible to receive it through a trial, EAP, or whatever.

                                                                                I received Interleukin-2 in 2010-11.  Since I've received subsequent treatments, I'll never know for sure if it's played some role in keeping me here four years later.  It was a tough treatment at the most difficult time of my life, one of the toughest things I've ever done.  I do not regret doing it, and would do it again if I had to.  However, given the opportunity to use an anti-PD-1 like MK-3475 with all that's been learned since then, Interleukin-2 would be way down my list right now.

                                                                                Joe

                                                                                 

                                                                                ed williams
                                                                                Participant

                                                                                  Thanks Bubbles for putting the link up to the video. I wish I had your computer skills. Listening to Dr.Ribas speak about how great the future looks for Immunotherapies is very up lifting. I have been on the BMS radomized double blind study of Nivo and Ipi since January). Ed

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