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Last Update

Forums General Melanoma Community Last Update

  • Post
    JoshF
    Participant

      Hi everyone-

      Just wanted to give an update. So after fevers wouldn't relent, my onc did more blood work and blood cultures. Blood work showed elevated liver enzymes. Though she said not horrible, there was significant increase in AST, ALT and Alklaine Phosphate. Also slight decrease in urea nitrogen but didn't appear to be overly significant. LDH shot up to 423 which has typically hovered around 170-200. Follow up blood test showed decrease in LDH…now 323. AST went down a bit while ALT stayed the same and Alkaline Phosphate went up. I'm not quite sure what all this means but I know it's not good. She said its either the disease or yervoy(immune hepatitis). So another set of blood work tomorrow and abdomen CT. I'm scared to say the least.These numbers keep me out of Adoptive Cell trial at MDA. I have to hope it immune system and I'm trying to be positive but I'm struggling. Constant disappointment. Not to mention that a new plan will need to be figured out. I have TIL product which I'm so grateful for but I have to get in line so there's a wait there…what to do in the interim. Any suggestions? Heard about s trial at Duke. Just feel a sense of urgency. MDA trial finish line is within steps…..

      Josh

    Viewing 53 reply threads
    • Replies
        debwray
        Participant

          Following your story and crossing my fingers things take a turn for the best real soon.  Best of luck Josh for the ct scan and bloods tomorrow.

          Deb

          debwray
          Participant

            Following your story and crossing my fingers things take a turn for the best real soon.  Best of luck Josh for the ct scan and bloods tomorrow.

            Deb

            debwray
            Participant

              Following your story and crossing my fingers things take a turn for the best real soon.  Best of luck Josh for the ct scan and bloods tomorrow.

              Deb

              Patrisa
              Participant

                Hey Josh!

                Really sorry you keep finding those bumps in the road, but, maybe it's not totally bad… Did you take any medicine for those fevers you have been having? Many medicine for fevers (among others) are known to mess up liver enzymes… 

                Hang in there and we all hope for some more encouraging results tomorrow…

                love,

                 

                Patrisa

                Patrisa
                Participant

                  Hey Josh!

                  Really sorry you keep finding those bumps in the road, but, maybe it's not totally bad… Did you take any medicine for those fevers you have been having? Many medicine for fevers (among others) are known to mess up liver enzymes… 

                  Hang in there and we all hope for some more encouraging results tomorrow…

                  love,

                   

                  Patrisa

                  Patrisa
                  Participant

                    Hey Josh!

                    Really sorry you keep finding those bumps in the road, but, maybe it's not totally bad… Did you take any medicine for those fevers you have been having? Many medicine for fevers (among others) are known to mess up liver enzymes… 

                    Hang in there and we all hope for some more encouraging results tomorrow…

                    love,

                     

                    Patrisa

                    keepthefaith11
                    Participant
                      Josh, my dad had a fever and then elevated enzymes. It was due to the Yervoy. Immidiatelt stabilized with steroids. It is probably drug related. Thinking of you. Keep us updated.
                      keepthefaith11
                      Participant
                        Josh, my dad had a fever and then elevated enzymes. It was due to the Yervoy. Immidiatelt stabilized with steroids. It is probably drug related. Thinking of you. Keep us updated.
                        keepthefaith11
                        Participant
                          Josh, my dad had a fever and then elevated enzymes. It was due to the Yervoy. Immidiatelt stabilized with steroids. It is probably drug related. Thinking of you. Keep us updated.
                          RaquelP
                          Participant

                            Josh, it's hard not to fixate on the worst possible scenario. An elevated liver enzyme on it's own does not paint a diagnostic picture, but looking at the big picture, having all three elevated (and those three in particular) are in line with drug induced hepatitis. Unfortunately, when it comes to medicines our livers seem to take the biggest hit.

                            I will be saving my prayers for you tonight Josh! You deserve some good news! You are an inspiration. All the best tomorrow.

                            RaquelP
                            Participant

                              Josh, it's hard not to fixate on the worst possible scenario. An elevated liver enzyme on it's own does not paint a diagnostic picture, but looking at the big picture, having all three elevated (and those three in particular) are in line with drug induced hepatitis. Unfortunately, when it comes to medicines our livers seem to take the biggest hit.

                              I will be saving my prayers for you tonight Josh! You deserve some good news! You are an inspiration. All the best tomorrow.

                              RaquelP
                              Participant

                                Josh, it's hard not to fixate on the worst possible scenario. An elevated liver enzyme on it's own does not paint a diagnostic picture, but looking at the big picture, having all three elevated (and those three in particular) are in line with drug induced hepatitis. Unfortunately, when it comes to medicines our livers seem to take the biggest hit.

                                I will be saving my prayers for you tonight Josh! You deserve some good news! You are an inspiration. All the best tomorrow.

                                Julie in SoCal
                                Participant

                                  Oh man!!! Gosh Josh this just stinks!  I hate it that you have to hurry up and wait all of this while the clock is ticking!

                                  As others have said, Ipi and Pembro have whacked out my liver enzymes.  Steroids put the numbers back in to the normalish range.  Maybe this will work for you to?  Don't know.  Just know that I am praying for you and your team that you will get a good, healing plan in place.  Oh yea, and also for peace for your heart.

                                  Shalom,

                                  Julie

                                  Julie in SoCal
                                  Participant

                                    Oh man!!! Gosh Josh this just stinks!  I hate it that you have to hurry up and wait all of this while the clock is ticking!

                                    As others have said, Ipi and Pembro have whacked out my liver enzymes.  Steroids put the numbers back in to the normalish range.  Maybe this will work for you to?  Don't know.  Just know that I am praying for you and your team that you will get a good, healing plan in place.  Oh yea, and also for peace for your heart.

                                    Shalom,

                                    Julie

                                    Julie in SoCal
                                    Participant

                                      Oh man!!! Gosh Josh this just stinks!  I hate it that you have to hurry up and wait all of this while the clock is ticking!

                                      As others have said, Ipi and Pembro have whacked out my liver enzymes.  Steroids put the numbers back in to the normalish range.  Maybe this will work for you to?  Don't know.  Just know that I am praying for you and your team that you will get a good, healing plan in place.  Oh yea, and also for peace for your heart.

                                      Shalom,

                                      Julie

                                      Mat
                                      Participant

                                        Josh, thinking about you.  You're taking the right approach–deal with the present circumstance while continuing to look for options/alternatives.  That's all you can do.

                                        Mat
                                        Participant

                                          Josh, thinking about you.  You're taking the right approach–deal with the present circumstance while continuing to look for options/alternatives.  That's all you can do.

                                          Mat
                                          Participant

                                            Josh, thinking about you.  You're taking the right approach–deal with the present circumstance while continuing to look for options/alternatives.  That's all you can do.

                                            Bubbles
                                            Participant

                                              So very sorry, Joshie!!  Will be waiting to hear about the upcoming scans.  But…why not keep this simple and do Nivo (Opdivo) or Pembro (Keytruda)?  You haven't used an anti-PD1 product, right???? 

                                              There is also this trial currently recruiting:  https://clinicaltrials.gov/ct2/show/NCT02646748?term=JAK&recr=Open&cond=%22Melanoma%22&rank=1

                                              It seems to have two arms.  One arm will be given pembro with a JAK inhibitor and the other will get pembro with a Pl3K-delta inhibitor.

                                              There were also these ideas that I had mentioned before:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/interesting-trial-options-for-josh.html

                                              Hang in there.  You are tough enough to handle this even though it sucks great big green hairy wizard balls.  Keep us posted.  Love, celeste

                                               

                                               

                                              Bubbles
                                              Participant

                                                So very sorry, Joshie!!  Will be waiting to hear about the upcoming scans.  But…why not keep this simple and do Nivo (Opdivo) or Pembro (Keytruda)?  You haven't used an anti-PD1 product, right???? 

                                                There is also this trial currently recruiting:  https://clinicaltrials.gov/ct2/show/NCT02646748?term=JAK&recr=Open&cond=%22Melanoma%22&rank=1

                                                It seems to have two arms.  One arm will be given pembro with a JAK inhibitor and the other will get pembro with a Pl3K-delta inhibitor.

                                                There were also these ideas that I had mentioned before:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/interesting-trial-options-for-josh.html

                                                Hang in there.  You are tough enough to handle this even though it sucks great big green hairy wizard balls.  Keep us posted.  Love, celeste

                                                 

                                                 

                                                Bubbles
                                                Participant

                                                  So very sorry, Joshie!!  Will be waiting to hear about the upcoming scans.  But…why not keep this simple and do Nivo (Opdivo) or Pembro (Keytruda)?  You haven't used an anti-PD1 product, right???? 

                                                  There is also this trial currently recruiting:  https://clinicaltrials.gov/ct2/show/NCT02646748?term=JAK&recr=Open&cond=%22Melanoma%22&rank=1

                                                  It seems to have two arms.  One arm will be given pembro with a JAK inhibitor and the other will get pembro with a Pl3K-delta inhibitor.

                                                  There were also these ideas that I had mentioned before:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/interesting-trial-options-for-josh.html

                                                  Hang in there.  You are tough enough to handle this even though it sucks great big green hairy wizard balls.  Keep us posted.  Love, celeste

                                                   

                                                   

                                                    JoshF
                                                    Participant

                                                      Unfortunately I did Nivo, that when I progressed in May. So far it's been ipi 2x for total of 7 doses and like 5 months of Nivo. Really hoping this is immune hepatitis and we can get under control quick. I need to put one in the win column. And thanks again for trial info, I've kept those on file. Still hoping this adoptive cell will happen or I'll get on TIL list ASAP. You're awesome Celeste.

                                                      Josh

                                                      JoshF
                                                      Participant

                                                        Unfortunately I did Nivo, that when I progressed in May. So far it's been ipi 2x for total of 7 doses and like 5 months of Nivo. Really hoping this is immune hepatitis and we can get under control quick. I need to put one in the win column. And thanks again for trial info, I've kept those on file. Still hoping this adoptive cell will happen or I'll get on TIL list ASAP. You're awesome Celeste.

                                                        Josh

                                                        Bubbles
                                                        Participant

                                                          Ok…I was having a brain fart and couldn't quite remember how all that went.  But…still good…cause that would mean you should qualify for this trial – it is specifically for folks who advanced on anti-PD1 (which I thought was you, but then second guessed myself when I couldn't find a record of it in your stuff!!) It is the one with the 2 arms (Pembro with JAK inhibitor  OR  pembro and the delta inhibitor) – https://clinicaltrials.gov/ct2/show/NCT02646748?term=JAK&recr=Open&cond=%22Melanoma%22&rank=1

                                                          But….there is this one also….that I meant to be the one I included in the first response….https://clinicaltrials.gov/ct2/show/NCT02475213   It is pembro with enoblituzumab….and it doesn't seem to matter if you have had anti-PD1 or not.

                                                          Sorry for the confusion.  Anyhow…I agree with you…and am mostly hoping that this glitch works itself out and you can just carry on with the plan you had!!! love, c

                                                          Bubbles
                                                          Participant

                                                            Ok…I was having a brain fart and couldn't quite remember how all that went.  But…still good…cause that would mean you should qualify for this trial – it is specifically for folks who advanced on anti-PD1 (which I thought was you, but then second guessed myself when I couldn't find a record of it in your stuff!!) It is the one with the 2 arms (Pembro with JAK inhibitor  OR  pembro and the delta inhibitor) – https://clinicaltrials.gov/ct2/show/NCT02646748?term=JAK&recr=Open&cond=%22Melanoma%22&rank=1

                                                            But….there is this one also….that I meant to be the one I included in the first response….https://clinicaltrials.gov/ct2/show/NCT02475213   It is pembro with enoblituzumab….and it doesn't seem to matter if you have had anti-PD1 or not.

                                                            Sorry for the confusion.  Anyhow…I agree with you…and am mostly hoping that this glitch works itself out and you can just carry on with the plan you had!!! love, c

                                                            Bubbles
                                                            Participant

                                                              Ok…I was having a brain fart and couldn't quite remember how all that went.  But…still good…cause that would mean you should qualify for this trial – it is specifically for folks who advanced on anti-PD1 (which I thought was you, but then second guessed myself when I couldn't find a record of it in your stuff!!) It is the one with the 2 arms (Pembro with JAK inhibitor  OR  pembro and the delta inhibitor) – https://clinicaltrials.gov/ct2/show/NCT02646748?term=JAK&recr=Open&cond=%22Melanoma%22&rank=1

                                                              But….there is this one also….that I meant to be the one I included in the first response….https://clinicaltrials.gov/ct2/show/NCT02475213   It is pembro with enoblituzumab….and it doesn't seem to matter if you have had anti-PD1 or not.

                                                              Sorry for the confusion.  Anyhow…I agree with you…and am mostly hoping that this glitch works itself out and you can just carry on with the plan you had!!! love, c

                                                              Casitas1
                                                              Participant

                                                                Hey Josh, I had the elevated liver counts on ipi/nivo too… I also progressed on nivo alone. However did Keytruda and had a response It may be worth a try? Dr. said after me he tried it on two other patients and one responded as well.

                                                                Paul

                                                                Casitas1
                                                                Participant

                                                                  Hey Josh, I had the elevated liver counts on ipi/nivo too… I also progressed on nivo alone. However did Keytruda and had a response It may be worth a try? Dr. said after me he tried it on two other patients and one responded as well.

                                                                  Paul

                                                                  Casitas1
                                                                  Participant

                                                                    Hey Josh, I had the elevated liver counts on ipi/nivo too… I also progressed on nivo alone. However did Keytruda and had a response It may be worth a try? Dr. said after me he tried it on two other patients and one responded as well.

                                                                    Paul

                                                                    JoshF
                                                                    Participant

                                                                      Unfortunately I did Nivo, that when I progressed in May. So far it's been ipi 2x for total of 7 doses and like 5 months of Nivo. Really hoping this is immune hepatitis and we can get under control quick. I need to put one in the win column. And thanks again for trial info, I've kept those on file. Still hoping this adoptive cell will happen or I'll get on TIL list ASAP. You're awesome Celeste.

                                                                      Josh

                                                                    Lee Parlier
                                                                    Participant

                                                                      I will be participating in a trial Duke the this month. I was not a yervoy responder . The trial at DUKE     Durvalumab, Tremelimumab, IMCgp100. I have no idea what to expectect. The info in on the DUKE Web sight. 

                                                                      Lee Parlier
                                                                      Participant

                                                                        I will be participating in a trial Duke the this month. I was not a yervoy responder . The trial at DUKE     Durvalumab, Tremelimumab, IMCgp100. I have no idea what to expectect. The info in on the DUKE Web sight. 

                                                                        Lee Parlier
                                                                        Participant

                                                                          I will be participating in a trial Duke the this month. I was not a yervoy responder . The trial at DUKE     Durvalumab, Tremelimumab, IMCgp100. I have no idea what to expectect. The info in on the DUKE Web sight. 

                                                                          Hukill
                                                                          Participant

                                                                            I get my 4th round of Yervoy/Opdivo on 09/09/2016. I have been running fever for 6 weeks. When it first started I went to the ER like I was told. Blood work was all normal. Dr put me on antibiotics and sent me home. Two days later my fever has not gone away so they told me to come back in for more labs. In 3 days my liver count was 6 times above the max number so they hospitilized me and stopped the antibiotics. They ran every test for infection they could even drawing 10 tubes of blood at one time. After 3 days my liver count had went way down and all tests were negative and they sent me home. Two weeks later my liver count is still elevated some but still goes down. It may be high due to the amount of medicine I take to keep the fever under control, every 4 hours or it returns. It is like no other fever I have had. The chills are so bad that even in the hot tub I still shiver. It did stop for 4 days last week but it returned. This will be my last dose of Yervoy so I hope the fever stops.

                                                                            Hukill
                                                                            Participant

                                                                              I get my 4th round of Yervoy/Opdivo on 09/09/2016. I have been running fever for 6 weeks. When it first started I went to the ER like I was told. Blood work was all normal. Dr put me on antibiotics and sent me home. Two days later my fever has not gone away so they told me to come back in for more labs. In 3 days my liver count was 6 times above the max number so they hospitilized me and stopped the antibiotics. They ran every test for infection they could even drawing 10 tubes of blood at one time. After 3 days my liver count had went way down and all tests were negative and they sent me home. Two weeks later my liver count is still elevated some but still goes down. It may be high due to the amount of medicine I take to keep the fever under control, every 4 hours or it returns. It is like no other fever I have had. The chills are so bad that even in the hot tub I still shiver. It did stop for 4 days last week but it returned. This will be my last dose of Yervoy so I hope the fever stops.

                                                                              Hukill
                                                                              Participant

                                                                                I get my 4th round of Yervoy/Opdivo on 09/09/2016. I have been running fever for 6 weeks. When it first started I went to the ER like I was told. Blood work was all normal. Dr put me on antibiotics and sent me home. Two days later my fever has not gone away so they told me to come back in for more labs. In 3 days my liver count was 6 times above the max number so they hospitilized me and stopped the antibiotics. They ran every test for infection they could even drawing 10 tubes of blood at one time. After 3 days my liver count had went way down and all tests were negative and they sent me home. Two weeks later my liver count is still elevated some but still goes down. It may be high due to the amount of medicine I take to keep the fever under control, every 4 hours or it returns. It is like no other fever I have had. The chills are so bad that even in the hot tub I still shiver. It did stop for 4 days last week but it returned. This will be my last dose of Yervoy so I hope the fever stops.

                                                                                Polymath
                                                                                Participant

                                                                                  Gosh Josh,

                                                                                  You are giving me a case of survivor guilt.  As you continue to struggle with side-effects of treatment, and emotional grief brought on by the uncertainty of the future, I am feeling bad because despite my own issues, I am skating along whistling Dixie.  Of course running an LDH count at or above 500 for the last 6 months is reminder that there's something rotten in Denmark,  I am really feeling your pain and frustration.  I have little to add but that we all hope your scans, and short-term diagnosis is such that your desired treatment gets back on track in a hurry.  Remember our fight, is to find, and sometimes demand the treatments we desire, and not an internal battle which only serves to weaken the body and mind we are trying to heal.  Hang in there buddy!

                                                                                  Gary

                                                                                  Polymath
                                                                                  Participant

                                                                                    Gosh Josh,

                                                                                    You are giving me a case of survivor guilt.  As you continue to struggle with side-effects of treatment, and emotional grief brought on by the uncertainty of the future, I am feeling bad because despite my own issues, I am skating along whistling Dixie.  Of course running an LDH count at or above 500 for the last 6 months is reminder that there's something rotten in Denmark,  I am really feeling your pain and frustration.  I have little to add but that we all hope your scans, and short-term diagnosis is such that your desired treatment gets back on track in a hurry.  Remember our fight, is to find, and sometimes demand the treatments we desire, and not an internal battle which only serves to weaken the body and mind we are trying to heal.  Hang in there buddy!

                                                                                    Gary

                                                                                    Polymath
                                                                                    Participant

                                                                                      Gosh Josh,

                                                                                      You are giving me a case of survivor guilt.  As you continue to struggle with side-effects of treatment, and emotional grief brought on by the uncertainty of the future, I am feeling bad because despite my own issues, I am skating along whistling Dixie.  Of course running an LDH count at or above 500 for the last 6 months is reminder that there's something rotten in Denmark,  I am really feeling your pain and frustration.  I have little to add but that we all hope your scans, and short-term diagnosis is such that your desired treatment gets back on track in a hurry.  Remember our fight, is to find, and sometimes demand the treatments we desire, and not an internal battle which only serves to weaken the body and mind we are trying to heal.  Hang in there buddy!

                                                                                      Gary

                                                                                      Jubes
                                                                                      Participant

                                                                                        Hi josh

                                                                                        thanks for updating us. Not surprised that our liver functions are struggling. Mine is also 4 times normal ( partly because of antibiotics that I am getting for possible tb, caused by infliximab for immuno side effects!)

                                                                                        but we will get there. You are the best advocate I've seen on here. Just keep doing what you are doing. An inspiration to us all

                                                                                         

                                                                                        anne-Louise 

                                                                                        Jubes
                                                                                        Participant

                                                                                          Hi josh

                                                                                          thanks for updating us. Not surprised that our liver functions are struggling. Mine is also 4 times normal ( partly because of antibiotics that I am getting for possible tb, caused by infliximab for immuno side effects!)

                                                                                          but we will get there. You are the best advocate I've seen on here. Just keep doing what you are doing. An inspiration to us all

                                                                                           

                                                                                          anne-Louise 

                                                                                          Jubes
                                                                                          Participant

                                                                                            Hi josh

                                                                                            thanks for updating us. Not surprised that our liver functions are struggling. Mine is also 4 times normal ( partly because of antibiotics that I am getting for possible tb, caused by infliximab for immuno side effects!)

                                                                                            but we will get there. You are the best advocate I've seen on here. Just keep doing what you are doing. An inspiration to us all

                                                                                             

                                                                                            anne-Louise 

                                                                                            jenny22
                                                                                            Participant

                                                                                              Hi Josh-

                                                                                              I am going to remain hopeful that all your elevated numbers are  medication induced….Keeping my fingers crossed for a good scan tomorrow.

                                                                                              Though i know you are trying to stay one step ahead, and always have the next plan, lets get your scan results back, and go from there…..

                                                                                              Im going with immune hepatitis until proven otherwise.

                                                                                              For now, sending you my best thoughts!!!!!!!

                                                                                              Will wait for your next post,

                                                                                              best,

                                                                                              jenny

                                                                                              jenny22
                                                                                              Participant

                                                                                                Hi Josh-

                                                                                                I am going to remain hopeful that all your elevated numbers are  medication induced….Keeping my fingers crossed for a good scan tomorrow.

                                                                                                Though i know you are trying to stay one step ahead, and always have the next plan, lets get your scan results back, and go from there…..

                                                                                                Im going with immune hepatitis until proven otherwise.

                                                                                                For now, sending you my best thoughts!!!!!!!

                                                                                                Will wait for your next post,

                                                                                                best,

                                                                                                jenny

                                                                                                jenny22
                                                                                                Participant

                                                                                                  Hi Josh-

                                                                                                  I am going to remain hopeful that all your elevated numbers are  medication induced….Keeping my fingers crossed for a good scan tomorrow.

                                                                                                  Though i know you are trying to stay one step ahead, and always have the next plan, lets get your scan results back, and go from there…..

                                                                                                  Im going with immune hepatitis until proven otherwise.

                                                                                                  For now, sending you my best thoughts!!!!!!!

                                                                                                  Will wait for your next post,

                                                                                                  best,

                                                                                                  jenny

                                                                                                  Aaron
                                                                                                  Participant

                                                                                                    Josh unfortunately I am not familiar with all of the numbers you have it out there but I do understand your anxiety. Stay focused and keep on!  It ain't over 

                                                                                                    Aaron
                                                                                                    Participant

                                                                                                      Josh unfortunately I am not familiar with all of the numbers you have it out there but I do understand your anxiety. Stay focused and keep on!  It ain't over 

                                                                                                      Aaron
                                                                                                      Participant

                                                                                                        Josh unfortunately I am not familiar with all of the numbers you have it out there but I do understand your anxiety. Stay focused and keep on!  It ain't over 

                                                                                                        jamieth29
                                                                                                        Participant
                                                                                                          Josh I have read your post so many times today trying to come up with something inspirational to say. The fact is i just hurt for you man. I know how your feeling so much it scares the crap out of me. I think this is why people call us and others warriors. Not because we can and have to put up with the physical pain from disease and all the meds but because we dig deep and find a way to battle the mental process it takes to survive. You have it my friend, I know you’ll find a way to beat this bump and come through. Your strong just like many others here. I’m grateful to know you even though we never met I feel like we have. I know you talked to Luke and I looked at there site today… IF you can’t get in your trial maybe something at the University? They seem to have a bunch of stuff geared towards people failing pd-1. Also remember Mat failed ipi and nivo separately but together is doing something different for him. I’m praying for you tonight thanks for the update.
                                                                                                          jamieth29
                                                                                                          Participant
                                                                                                            Josh I have read your post so many times today trying to come up with something inspirational to say. The fact is i just hurt for you man. I know how your feeling so much it scares the crap out of me. I think this is why people call us and others warriors. Not because we can and have to put up with the physical pain from disease and all the meds but because we dig deep and find a way to battle the mental process it takes to survive. You have it my friend, I know you’ll find a way to beat this bump and come through. Your strong just like many others here. I’m grateful to know you even though we never met I feel like we have. I know you talked to Luke and I looked at there site today… IF you can’t get in your trial maybe something at the University? They seem to have a bunch of stuff geared towards people failing pd-1. Also remember Mat failed ipi and nivo separately but together is doing something different for him. I’m praying for you tonight thanks for the update.
                                                                                                            jamieth29
                                                                                                            Participant
                                                                                                              Josh I have read your post so many times today trying to come up with something inspirational to say. The fact is i just hurt for you man. I know how your feeling so much it scares the crap out of me. I think this is why people call us and others warriors. Not because we can and have to put up with the physical pain from disease and all the meds but because we dig deep and find a way to battle the mental process it takes to survive. You have it my friend, I know you’ll find a way to beat this bump and come through. Your strong just like many others here. I’m grateful to know you even though we never met I feel like we have. I know you talked to Luke and I looked at there site today… IF you can’t get in your trial maybe something at the University? They seem to have a bunch of stuff geared towards people failing pd-1. Also remember Mat failed ipi and nivo separately but together is doing something different for him. I’m praying for you tonight thanks for the update.
                                                                                                              BrianP
                                                                                                              Participant

                                                                                                                Josh,

                                                                                                                Sorry man.  As the others have said I hope this is just treatment induced issues that can be quickly resolved so you can get started on the MDA trial.

                                                                                                                 

                                                                                                                The Duke trial Lee is entering is:

                                                                                                                https://clinicaltrials.gov/ct2/show/:?term=IMCgp100&rank=3

                                                                                                                The interesting part about that trial is the IMCGP100.  The other two drugs in the trial is another version of PD-L1 and Ipi.  There is a site in St. Louis that may be more convenient to you.

                                                                                                                 

                                                                                                                NCI had a couple trials they recommended to me:

                                                                                                                https://clinicaltrials.gov/ct2/show/study/NCT02517398?show_locs=Y#locn

                                                                                                                This is some info on the drug in the above trial

                                                                                                                http://cancerintel.com/msb0011359c-overview-m7824/

                                                                                                                The 2nd trial is:

                                                                                                                https://clinicaltrials.gov/ct2/show/NCT02452268

                                                                                                                 

                                                                                                                Hang in there. 

                                                                                                                Brian

                                                                                                                 

                                                                                                                 

                                                                                                                 

                                                                                                                  Mark_DC
                                                                                                                  Participant

                                                                                                                    Good luck Josh, will be praying for you

                                                                                                                    i am hoping the liver results are ipi related – this is what happened to me after only one ipi does and the numbers improved markedly after taking steroids

                                                                                                                    But i dont know what taking steroids would imply in terms of your treatment

                                                                                                                    appreciate your posts and your support for all of us

                                                                                                                    hope the scans and blood tests are good

                                                                                                                    good luck 

                                                                                                                    Mark_DC
                                                                                                                    Participant

                                                                                                                      Good luck Josh, will be praying for you

                                                                                                                      i am hoping the liver results are ipi related – this is what happened to me after only one ipi does and the numbers improved markedly after taking steroids

                                                                                                                      But i dont know what taking steroids would imply in terms of your treatment

                                                                                                                      appreciate your posts and your support for all of us

                                                                                                                      hope the scans and blood tests are good

                                                                                                                      good luck 

                                                                                                                      Mark_DC
                                                                                                                      Participant

                                                                                                                        Good luck Josh, will be praying for you

                                                                                                                        i am hoping the liver results are ipi related – this is what happened to me after only one ipi does and the numbers improved markedly after taking steroids

                                                                                                                        But i dont know what taking steroids would imply in terms of your treatment

                                                                                                                        appreciate your posts and your support for all of us

                                                                                                                        hope the scans and blood tests are good

                                                                                                                        good luck 

                                                                                                                      BrianP
                                                                                                                      Participant

                                                                                                                        Josh,

                                                                                                                        Sorry man.  As the others have said I hope this is just treatment induced issues that can be quickly resolved so you can get started on the MDA trial.

                                                                                                                         

                                                                                                                        The Duke trial Lee is entering is:

                                                                                                                        https://clinicaltrials.gov/ct2/show/:?term=IMCgp100&rank=3

                                                                                                                        The interesting part about that trial is the IMCGP100.  The other two drugs in the trial is another version of PD-L1 and Ipi.  There is a site in St. Louis that may be more convenient to you.

                                                                                                                         

                                                                                                                        NCI had a couple trials they recommended to me:

                                                                                                                        https://clinicaltrials.gov/ct2/show/study/NCT02517398?show_locs=Y#locn

                                                                                                                        This is some info on the drug in the above trial

                                                                                                                        http://cancerintel.com/msb0011359c-overview-m7824/

                                                                                                                        The 2nd trial is:

                                                                                                                        https://clinicaltrials.gov/ct2/show/NCT02452268

                                                                                                                         

                                                                                                                        Hang in there. 

                                                                                                                        Brian

                                                                                                                         

                                                                                                                         

                                                                                                                         

                                                                                                                        BrianP
                                                                                                                        Participant

                                                                                                                          Josh,

                                                                                                                          Sorry man.  As the others have said I hope this is just treatment induced issues that can be quickly resolved so you can get started on the MDA trial.

                                                                                                                           

                                                                                                                          The Duke trial Lee is entering is:

                                                                                                                          https://clinicaltrials.gov/ct2/show/:?term=IMCgp100&rank=3

                                                                                                                          The interesting part about that trial is the IMCGP100.  The other two drugs in the trial is another version of PD-L1 and Ipi.  There is a site in St. Louis that may be more convenient to you.

                                                                                                                           

                                                                                                                          NCI had a couple trials they recommended to me:

                                                                                                                          https://clinicaltrials.gov/ct2/show/study/NCT02517398?show_locs=Y#locn

                                                                                                                          This is some info on the drug in the above trial

                                                                                                                          http://cancerintel.com/msb0011359c-overview-m7824/

                                                                                                                          The 2nd trial is:

                                                                                                                          https://clinicaltrials.gov/ct2/show/NCT02452268

                                                                                                                           

                                                                                                                          Hang in there. 

                                                                                                                          Brian

                                                                                                                           

                                                                                                                           

                                                                                                                           

                                                                                                                          Johnjk04
                                                                                                                          Participant

                                                                                                                            Everyone is pushing for you brother Josh. You will be just fine kind sir.

                                                                                                                            There is an answer for you and you will find it. You 

                                                                                                                            Johnjk04
                                                                                                                            Participant

                                                                                                                              Everyone is pushing for you brother Josh. You will be just fine kind sir.

                                                                                                                              There is an answer for you and you will find it. You 

                                                                                                                              Johnjk04
                                                                                                                              Participant

                                                                                                                                Everyone is pushing for you brother Josh. You will be just fine kind sir.

                                                                                                                                There is an answer for you and you will find it. You 

                                                                                                                                WithinMySkin
                                                                                                                                Participant
                                                                                                                                  Thoughts and prayers headed your way, Josh! Every treatment I’ve been through, I’ve had to stop because of skyrocketing liver enzymes. Try and focus on one day at a time, one problem at a time. We’re all with you!

                                                                                                                                  PS this BETTER not be your last update! ๐Ÿ˜‰

                                                                                                                                  WithinMySkin
                                                                                                                                  Participant
                                                                                                                                    Thoughts and prayers headed your way, Josh! Every treatment I’ve been through, I’ve had to stop because of skyrocketing liver enzymes. Try and focus on one day at a time, one problem at a time. We’re all with you!

                                                                                                                                    PS this BETTER not be your last update! ๐Ÿ˜‰

                                                                                                                                      casagrayson
                                                                                                                                      Participant

                                                                                                                                        I agree!  When I saw the title of the post I immediately said to myself "oh no you don't"!   Much love, Josh.

                                                                                                                                         

                                                                                                                                        casagrayson
                                                                                                                                        Participant

                                                                                                                                          I agree!  When I saw the title of the post I immediately said to myself "oh no you don't"!   Much love, Josh.

                                                                                                                                           

                                                                                                                                          casagrayson
                                                                                                                                          Participant

                                                                                                                                            I agree!  When I saw the title of the post I immediately said to myself "oh no you don't"!   Much love, Josh.

                                                                                                                                             

                                                                                                                                          WithinMySkin
                                                                                                                                          Participant
                                                                                                                                            Thoughts and prayers headed your way, Josh! Every treatment I’ve been through, I’ve had to stop because of skyrocketing liver enzymes. Try and focus on one day at a time, one problem at a time. We’re all with you!

                                                                                                                                            PS this BETTER not be your last update! ๐Ÿ˜‰

                                                                                                                                            jbronicki
                                                                                                                                            Participant

                                                                                                                                              Hey Josh,

                                                                                                                                              Tried to do some research/info gathering on this yesterday.  Definitely sounds like Ipi induced liver hepatitis reaction.  I also tried to find out how quickly steroids could bring down the lab values but seems like people's reactions are all over the board, data wise. 

                                                                                                                                              So I'm keeping fingers crossed and prayers in the air for a quick reduction in your liver numbers.  Gotta get you to MDA!

                                                                                                                                              Many prayers for quick turnaround,

                                                                                                                                              Jackie

                                                                                                                                              jbronicki
                                                                                                                                              Participant

                                                                                                                                                Hey Josh,

                                                                                                                                                Tried to do some research/info gathering on this yesterday.  Definitely sounds like Ipi induced liver hepatitis reaction.  I also tried to find out how quickly steroids could bring down the lab values but seems like people's reactions are all over the board, data wise. 

                                                                                                                                                So I'm keeping fingers crossed and prayers in the air for a quick reduction in your liver numbers.  Gotta get you to MDA!

                                                                                                                                                Many prayers for quick turnaround,

                                                                                                                                                Jackie

                                                                                                                                                jbronicki
                                                                                                                                                Participant

                                                                                                                                                  Hey Josh,

                                                                                                                                                  Tried to do some research/info gathering on this yesterday.  Definitely sounds like Ipi induced liver hepatitis reaction.  I also tried to find out how quickly steroids could bring down the lab values but seems like people's reactions are all over the board, data wise. 

                                                                                                                                                  So I'm keeping fingers crossed and prayers in the air for a quick reduction in your liver numbers.  Gotta get you to MDA!

                                                                                                                                                  Many prayers for quick turnaround,

                                                                                                                                                  Jackie

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