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Treatment plan is made

Forums General Melanoma Community Treatment plan is made

  • Post
    dfeng
    Participant

      Saw doctor yesterday. MRI brain clean. CAT for chest founds few very small spots that could not be identified what they are.

       

      In my case, average one year left. Let's see how long I can make it. 

       

      Three months treatment will start from as early as Thursday, depends on when my insurance company approves it.

       

      Had four treatments Kemo 17 years ago, I think I am ready for any side effect.

    Viewing 35 reply threads
    • Replies
        jamieth29
        Participant
          D.Feng
          your not included in that average! I hope things go well for you…what plan of treatment are you getting?
            dfeng
            Participant

              It will be ipi-nivo combo trivial, for three months.

               

              Many thanks for your encourage!

               

              Tamils
              Participant

                Hi D. Feng,

                That trial certainly seems like the best treatment out there right now, at least for garden-variety stage IV.  Wishing you the best!  

                I saw on your profile that you originally had ocular melanoma.  Do the doctors think that that was your primary?  As you probably already know, Dr. Takami Sato at Thomas Jefferson in Philadelphia is one of the leading specialists in metastatic OM; you might consider getting an opinion from him about a Plan B.

                My father had OM and tried pembro while it was still offered as a trial.  His specialist said, "we have no evidence that this works in OM, but we also have no evidence it *doesn't* work, and since the side effects are low, let's give it a try."  I don't know if the evidence has advanced since then, but I figure Dr Sato would know.

                I hope the combo works for you!

                Tamils
                Participant

                  Hi D. Feng,

                  That trial certainly seems like the best treatment out there right now, at least for garden-variety stage IV.  Wishing you the best!  

                  I saw on your profile that you originally had ocular melanoma.  Do the doctors think that that was your primary?  As you probably already know, Dr. Takami Sato at Thomas Jefferson in Philadelphia is one of the leading specialists in metastatic OM; you might consider getting an opinion from him about a Plan B.

                  My father had OM and tried pembro while it was still offered as a trial.  His specialist said, "we have no evidence that this works in OM, but we also have no evidence it *doesn't* work, and since the side effects are low, let's give it a try."  I don't know if the evidence has advanced since then, but I figure Dr Sato would know.

                  I hope the combo works for you!

                  Tamils
                  Participant

                    Hi D. Feng,

                    That trial certainly seems like the best treatment out there right now, at least for garden-variety stage IV.  Wishing you the best!  

                    I saw on your profile that you originally had ocular melanoma.  Do the doctors think that that was your primary?  As you probably already know, Dr. Takami Sato at Thomas Jefferson in Philadelphia is one of the leading specialists in metastatic OM; you might consider getting an opinion from him about a Plan B.

                    My father had OM and tried pembro while it was still offered as a trial.  His specialist said, "we have no evidence that this works in OM, but we also have no evidence it *doesn't* work, and since the side effects are low, let's give it a try."  I don't know if the evidence has advanced since then, but I figure Dr Sato would know.

                    I hope the combo works for you!

                    ed williams
                    Participant

                      Welcome to the club!!! 18months on combination and still smiling!!!! Ed

                      ed williams
                      Participant

                        Welcome to the club!!! 18months on combination and still smiling!!!! Ed

                        ed williams
                        Participant

                          Welcome to the club!!! 18months on combination and still smiling!!!! Ed

                          dfeng
                          Participant

                            It will be ipi-nivo combo trivial, for three months.

                             

                            Many thanks for your encourage!

                             

                            dfeng
                            Participant

                              It will be ipi-nivo combo trivial, for three months.

                               

                              Many thanks for your encourage!

                               

                            jamieth29
                            Participant
                              D.Feng
                              your not included in that average! I hope things go well for you…what plan of treatment are you getting?
                              jamieth29
                              Participant
                                D.Feng
                                your not included in that average! I hope things go well for you…what plan of treatment are you getting?
                                Bubbles
                                Participant

                                  D. Feng,

                                  That is probably the best treatment combo going!!!  Congrats and good luck!  Celeste

                                    tschmith
                                    Participant

                                      We're pulling for you!!!!!!  Keep us posted.

                                      Best wishes!   Terrie

                                      tschmith
                                      Participant

                                        We're pulling for you!!!!!!  Keep us posted.

                                        Best wishes!   Terrie

                                        tschmith
                                        Participant

                                          We're pulling for you!!!!!!  Keep us posted.

                                          Best wishes!   Terrie

                                        Bubbles
                                        Participant

                                          D. Feng,

                                          That is probably the best treatment combo going!!!  Congrats and good luck!  Celeste

                                          Bubbles
                                          Participant

                                            D. Feng,

                                            That is probably the best treatment combo going!!!  Congrats and good luck!  Celeste

                                            dfeng
                                            Participant

                                              Paper work signed on Tuesday, treatment appointed on Thursday but the insurance hadn't cleared before Wednesday evening, so they have to put off the treatment to next Tuesday.

                                              Just got call that the insurance company approved the treatment today, early Thursday, the nurse tried to put me back to today's queue but the facility is full of patients, all schedule is filled…

                                              So it would have to be next Tuesday. Hope fives days waiting won't make big difference.

                                               

                                               

                                                dfeng
                                                Participant

                                                  Did first infusion on Tuesday, today is the third from it.

                                                  Had a few pinch in vein when the medicine was given, and inside body feeling warm, not burning. No obvious negative symptoms during first 6 hours after infusion.

                                                  During first night, got low fever, diarrhea and lot of nightmare. Sweat a lot, thirsty and muscle aches. But to tell the truth, not that horrible at all.

                                                  Felt tired in the coming morning, and hungry. Still have a very good appetite, and then try to eat a lot healthy food. Did a little walking outside, and most time was resting and resting.

                                                  Second night was a lot better. Got a sound sleep. Interrupted by diarrhea once but as long as my head touched the pillow, everything in ease.

                                                  Today I drive to work alone. Still a little weak so I am not going to do labor job today.

                                                  Summary, the side effect is not very tough yet to me. 

                                                  stars
                                                  Participant

                                                    Wow, you've started already. Glad the side effects are manageable, amazing that you still went to work. Sounds like you are doing well. And perhaps some of those initial things are stress related, too, and might settle. You seem a very pragmatic person, thanks for the update and I hope you get some great results.

                                                    stars
                                                    Participant

                                                      Wow, you've started already. Glad the side effects are manageable, amazing that you still went to work. Sounds like you are doing well. And perhaps some of those initial things are stress related, too, and might settle. You seem a very pragmatic person, thanks for the update and I hope you get some great results.

                                                      stars
                                                      Participant

                                                        Wow, you've started already. Glad the side effects are manageable, amazing that you still went to work. Sounds like you are doing well. And perhaps some of those initial things are stress related, too, and might settle. You seem a very pragmatic person, thanks for the update and I hope you get some great results.

                                                        dfeng
                                                        Participant

                                                          Did first infusion on Tuesday, today is the third from it.

                                                          Had a few pinch in vein when the medicine was given, and inside body feeling warm, not burning. No obvious negative symptoms during first 6 hours after infusion.

                                                          During first night, got low fever, diarrhea and lot of nightmare. Sweat a lot, thirsty and muscle aches. But to tell the truth, not that horrible at all.

                                                          Felt tired in the coming morning, and hungry. Still have a very good appetite, and then try to eat a lot healthy food. Did a little walking outside, and most time was resting and resting.

                                                          Second night was a lot better. Got a sound sleep. Interrupted by diarrhea once but as long as my head touched the pillow, everything in ease.

                                                          Today I drive to work alone. Still a little weak so I am not going to do labor job today.

                                                          Summary, the side effect is not very tough yet to me. 

                                                          dfeng
                                                          Participant

                                                            Did first infusion on Tuesday, today is the third from it.

                                                            Had a few pinch in vein when the medicine was given, and inside body feeling warm, not burning. No obvious negative symptoms during first 6 hours after infusion.

                                                            During first night, got low fever, diarrhea and lot of nightmare. Sweat a lot, thirsty and muscle aches. But to tell the truth, not that horrible at all.

                                                            Felt tired in the coming morning, and hungry. Still have a very good appetite, and then try to eat a lot healthy food. Did a little walking outside, and most time was resting and resting.

                                                            Second night was a lot better. Got a sound sleep. Interrupted by diarrhea once but as long as my head touched the pillow, everything in ease.

                                                            Today I drive to work alone. Still a little weak so I am not going to do labor job today.

                                                            Summary, the side effect is not very tough yet to me. 

                                                          dfeng
                                                          Participant

                                                            Paper work signed on Tuesday, treatment appointed on Thursday but the insurance hadn't cleared before Wednesday evening, so they have to put off the treatment to next Tuesday.

                                                            Just got call that the insurance company approved the treatment today, early Thursday, the nurse tried to put me back to today's queue but the facility is full of patients, all schedule is filled…

                                                            So it would have to be next Tuesday. Hope fives days waiting won't make big difference.

                                                             

                                                             

                                                            dfeng
                                                            Participant

                                                              Paper work signed on Tuesday, treatment appointed on Thursday but the insurance hadn't cleared before Wednesday evening, so they have to put off the treatment to next Tuesday.

                                                              Just got call that the insurance company approved the treatment today, early Thursday, the nurse tried to put me back to today's queue but the facility is full of patients, all schedule is filled…

                                                              So it would have to be next Tuesday. Hope fives days waiting won't make big difference.

                                                               

                                                               

                                                              dfeng
                                                              Participant

                                                                One week after the first infusion.

                                                                Small rashes starts to pop out and causing itching. The weather is hot so make it worse.

                                                                Experience more diarrhea today, and the scars from last surgery are itching too.

                                                                Have to intake enough fluid and electrolyte replenisher. 

                                                                Still activily working on my job.

                                                                dfeng
                                                                Participant

                                                                  One week after the first infusion.

                                                                  Small rashes starts to pop out and causing itching. The weather is hot so make it worse.

                                                                  Experience more diarrhea today, and the scars from last surgery are itching too.

                                                                  Have to intake enough fluid and electrolyte replenisher. 

                                                                  Still activily working on my job.

                                                                  dfeng
                                                                  Participant

                                                                    One week after the first infusion.

                                                                    Small rashes starts to pop out and causing itching. The weather is hot so make it worse.

                                                                    Experience more diarrhea today, and the scars from last surgery are itching too.

                                                                    Have to intake enough fluid and electrolyte replenisher. 

                                                                    Still activily working on my job.

                                                                    dfeng
                                                                    Participant

                                                                      weird stomachache this early morning after some kind of hungry feeling waked me.

                                                                      not safe to drive to work under this pain so my wife drove me.

                                                                      let me see how it is going.

                                                                        dfeng
                                                                        Participant

                                                                          the pain left. Some dierrhea followed it and it seems to be the side effect add up to my surgery wound.

                                                                          jamieth29
                                                                          Participant
                                                                            D.Feng
                                                                            Thanks for keeping the updates i am following. I can tell the kind of determination you have and I definitely admire that.Keep fighting the good fight. Here’s to you my friend!
                                                                            stars
                                                                            Participant

                                                                              I second that, DFeng. I didn't realise you were updating this older thread. Don't be afraid to update as a new thread – more people will see it and i think lots of people would be interested in your news but may not find this older thread. All the best, I too admire your determination. I sense a very logical mind!

                                                                              dfeng
                                                                              Participant

                                                                                I am updating this old one is because I want the record I am writing are connected, like a thread instead of fragmented everywhere.

                                                                                I will keep the link to this post in my desc so easy to be found.

                                                                                DZnDef
                                                                                Participant

                                                                                  Another alternative to updating this thread (which may be lost to others as it falls further and further back) is to do the updates on your profile page.  That would be one place to record all of your progress as it happens.  Then when you comment on someone else's post, if they are interested in your history, they just click your username and they'll see your complete history.  Just something to consider.

                                                                                  Cheers

                                                                                  Maggie

                                                                                  dfeng
                                                                                  Participant

                                                                                    I put the link in my signature area. 

                                                                                    dfeng
                                                                                    Participant

                                                                                      I put the link in my signature area. 

                                                                                      dfeng
                                                                                      Participant

                                                                                        I put the link in my signature area. 

                                                                                        DZnDef
                                                                                        Participant

                                                                                          Another alternative to updating this thread (which may be lost to others as it falls further and further back) is to do the updates on your profile page.  That would be one place to record all of your progress as it happens.  Then when you comment on someone else's post, if they are interested in your history, they just click your username and they'll see your complete history.  Just something to consider.

                                                                                          Cheers

                                                                                          Maggie

                                                                                          DZnDef
                                                                                          Participant

                                                                                            Another alternative to updating this thread (which may be lost to others as it falls further and further back) is to do the updates on your profile page.  That would be one place to record all of your progress as it happens.  Then when you comment on someone else's post, if they are interested in your history, they just click your username and they'll see your complete history.  Just something to consider.

                                                                                            Cheers

                                                                                            Maggie

                                                                                            dfeng
                                                                                            Participant

                                                                                              I am updating this old one is because I want the record I am writing are connected, like a thread instead of fragmented everywhere.

                                                                                              I will keep the link to this post in my desc so easy to be found.

                                                                                              dfeng
                                                                                              Participant

                                                                                                I am updating this old one is because I want the record I am writing are connected, like a thread instead of fragmented everywhere.

                                                                                                I will keep the link to this post in my desc so easy to be found.

                                                                                                stars
                                                                                                Participant

                                                                                                  I second that, DFeng. I didn't realise you were updating this older thread. Don't be afraid to update as a new thread – more people will see it and i think lots of people would be interested in your news but may not find this older thread. All the best, I too admire your determination. I sense a very logical mind!

                                                                                                  stars
                                                                                                  Participant

                                                                                                    I second that, DFeng. I didn't realise you were updating this older thread. Don't be afraid to update as a new thread – more people will see it and i think lots of people would be interested in your news but may not find this older thread. All the best, I too admire your determination. I sense a very logical mind!

                                                                                                    jamieth29
                                                                                                    Participant
                                                                                                      D.Feng
                                                                                                      Thanks for keeping the updates i am following. I can tell the kind of determination you have and I definitely admire that.Keep fighting the good fight. Here’s to you my friend!
                                                                                                      jamieth29
                                                                                                      Participant
                                                                                                        D.Feng
                                                                                                        Thanks for keeping the updates i am following. I can tell the kind of determination you have and I definitely admire that.Keep fighting the good fight. Here’s to you my friend!
                                                                                                        dfeng
                                                                                                        Participant

                                                                                                          the pain left. Some dierrhea followed it and it seems to be the side effect add up to my surgery wound.

                                                                                                          dfeng
                                                                                                          Participant

                                                                                                            the pain left. Some dierrhea followed it and it seems to be the side effect add up to my surgery wound.

                                                                                                          dfeng
                                                                                                          Participant

                                                                                                            weird stomachache this early morning after some kind of hungry feeling waked me.

                                                                                                            not safe to drive to work under this pain so my wife drove me.

                                                                                                            let me see how it is going.

                                                                                                            dfeng
                                                                                                            Participant

                                                                                                              weird stomachache this early morning after some kind of hungry feeling waked me.

                                                                                                              not safe to drive to work under this pain so my wife drove me.

                                                                                                              let me see how it is going.

                                                                                                              dfeng
                                                                                                              Participant

                                                                                                                The rashes were really itching these two days. Especially those at forearm and neck.

                                                                                                                Cold water washing helps. 

                                                                                                                  dfeng
                                                                                                                  Participant

                                                                                                                    It seems that the rash is very active related the metabolism. Do not scratch! Avoid sun burn, heat and so on.

                                                                                                                    Keep skin dry and cool.

                                                                                                                    dfeng
                                                                                                                    Participant

                                                                                                                      It seems that the rash is very active related the metabolism. Do not scratch! Avoid sun burn, heat and so on.

                                                                                                                      Keep skin dry and cool.

                                                                                                                      dfeng
                                                                                                                      Participant

                                                                                                                        It seems that the rash is very active related the metabolism. Do not scratch! Avoid sun burn, heat and so on.

                                                                                                                        Keep skin dry and cool.

                                                                                                                      dfeng
                                                                                                                      Participant

                                                                                                                        The rashes were really itching these two days. Especially those at forearm and neck.

                                                                                                                        Cold water washing helps. 

                                                                                                                        dfeng
                                                                                                                        Participant

                                                                                                                          The rashes were really itching these two days. Especially those at forearm and neck.

                                                                                                                          Cold water washing helps. 

                                                                                                                          dfeng
                                                                                                                          Participant

                                                                                                                            Back muscle ache this morning. Combined with some kinds of pain from liver area. Try to do soft massage and it is going away.

                                                                                                                            In the afternoon, pain inside are gone. Muscle ache didn't leave totally but it was reducing a lot.

                                                                                                                              jamieth29
                                                                                                                              Participant
                                                                                                                                How long until a scan? This trial may be in my future…thanks for the updates!
                                                                                                                                dfeng
                                                                                                                                Participant

                                                                                                                                  It should be in three months.

                                                                                                                                  dfeng
                                                                                                                                  Participant

                                                                                                                                    It should be in three months.

                                                                                                                                    dfeng
                                                                                                                                    Participant

                                                                                                                                      It should be in three months.

                                                                                                                                      jamieth29
                                                                                                                                      Participant
                                                                                                                                        How long until a scan? This trial may be in my future…thanks for the updates!
                                                                                                                                        jamieth29
                                                                                                                                        Participant
                                                                                                                                          How long until a scan? This trial may be in my future…thanks for the updates!
                                                                                                                                        dfeng
                                                                                                                                        Participant

                                                                                                                                          Back muscle ache this morning. Combined with some kinds of pain from liver area. Try to do soft massage and it is going away.

                                                                                                                                          In the afternoon, pain inside are gone. Muscle ache didn't leave totally but it was reducing a lot.

                                                                                                                                          dfeng
                                                                                                                                          Participant

                                                                                                                                            Back muscle ache this morning. Combined with some kinds of pain from liver area. Try to do soft massage and it is going away.

                                                                                                                                            In the afternoon, pain inside are gone. Muscle ache didn't leave totally but it was reducing a lot.

                                                                                                                                            dfeng
                                                                                                                                            Participant

                                                                                                                                              stomachache again. Almost spend half day in bed. In the afternoon it starts to go away, but still not totally.

                                                                                                                                                dfeng
                                                                                                                                                Participant

                                                                                                                                                  Ok, it is gone. Feel tired and I guess there is something still in progressing somewhere.

                                                                                                                                                  I understand that it takes time for the medicine to do it job.

                                                                                                                                                  dfeng
                                                                                                                                                  Participant

                                                                                                                                                    Ok, it is gone. Feel tired and I guess there is something still in progressing somewhere.

                                                                                                                                                    I understand that it takes time for the medicine to do it job.

                                                                                                                                                    dfeng
                                                                                                                                                    Participant

                                                                                                                                                      Ok, it is gone. Feel tired and I guess there is something still in progressing somewhere.

                                                                                                                                                      I understand that it takes time for the medicine to do it job.

                                                                                                                                                    dfeng
                                                                                                                                                    Participant

                                                                                                                                                      stomachache again. Almost spend half day in bed. In the afternoon it starts to go away, but still not totally.

                                                                                                                                                      dfeng
                                                                                                                                                      Participant

                                                                                                                                                        stomachache again. Almost spend half day in bed. In the afternoon it starts to go away, but still not totally.

                                                                                                                                                        jamieth29
                                                                                                                                                        Participant
                                                                                                                                                          Hope that the side effects are because the drugs are working for you. Starting the braf inhibitors tomorrow for a month to hopefully knock down what disease i have then surgically go after it. Here’s to fighting the good fight my friend!
                                                                                                                                                            dfeng
                                                                                                                                                            Participant

                                                                                                                                                              Yeah, I hope too.

                                                                                                                                                              Today's treatment is put off to next tuesday, if my rash can be well controlled.

                                                                                                                                                              Do not look down at the rashes..

                                                                                                                                                              dfeng
                                                                                                                                                              Participant

                                                                                                                                                                After two days applying the cream to rash, it improves greatly.

                                                                                                                                                                Avoid to take the medicine by mouth, since it wakes your immune system, which is against the immunetherpy treatment.

                                                                                                                                                                 

                                                                                                                                                                dfeng
                                                                                                                                                                Participant

                                                                                                                                                                  After two days applying the cream to rash, it improves greatly.

                                                                                                                                                                  Avoid to take the medicine by mouth, since it wakes your immune system, which is against the immunetherpy treatment.

                                                                                                                                                                   

                                                                                                                                                                  dfeng
                                                                                                                                                                  Participant

                                                                                                                                                                    After two days applying the cream to rash, it improves greatly.

                                                                                                                                                                    Avoid to take the medicine by mouth, since it wakes your immune system, which is against the immunetherpy treatment.

                                                                                                                                                                     

                                                                                                                                                                    dfeng
                                                                                                                                                                    Participant

                                                                                                                                                                      The third day on cream. Rash is leaving.

                                                                                                                                                                      Only small spots itching and easy control.

                                                                                                                                                                       

                                                                                                                                                                      jamieth29
                                                                                                                                                                      Participant
                                                                                                                                                                        Good luck on Tuesday!
                                                                                                                                                                        jamieth29
                                                                                                                                                                        Participant
                                                                                                                                                                          Good luck on Tuesday!
                                                                                                                                                                          jamieth29
                                                                                                                                                                          Participant
                                                                                                                                                                            Good luck on Tuesday!
                                                                                                                                                                            stars
                                                                                                                                                                            Participant

                                                                                                                                                                              DFeng what a great idea to link your thread and update just one thread. You are making history here with that trial… and documenting it for self/others is fantastic. Hope those symptoms ease off and you get some good results soon

                                                                                                                                                                              Stars

                                                                                                                                                                              stars
                                                                                                                                                                              Participant

                                                                                                                                                                                DFeng what a great idea to link your thread and update just one thread. You are making history here with that trial… and documenting it for self/others is fantastic. Hope those symptoms ease off and you get some good results soon

                                                                                                                                                                                Stars

                                                                                                                                                                                stars
                                                                                                                                                                                Participant

                                                                                                                                                                                  DFeng what a great idea to link your thread and update just one thread. You are making history here with that trial… and documenting it for self/others is fantastic. Hope those symptoms ease off and you get some good results soon

                                                                                                                                                                                  Stars

                                                                                                                                                                                  dfeng
                                                                                                                                                                                  Participant

                                                                                                                                                                                    The third day on cream. Rash is leaving.

                                                                                                                                                                                    Only small spots itching and easy control.

                                                                                                                                                                                     

                                                                                                                                                                                    dfeng
                                                                                                                                                                                    Participant

                                                                                                                                                                                      The third day on cream. Rash is leaving.

                                                                                                                                                                                      Only small spots itching and easy control.

                                                                                                                                                                                       

                                                                                                                                                                                      dfeng
                                                                                                                                                                                      Participant

                                                                                                                                                                                        Yeah, I hope too.

                                                                                                                                                                                        Today's treatment is put off to next tuesday, if my rash can be well controlled.

                                                                                                                                                                                        Do not look down at the rashes..

                                                                                                                                                                                        dfeng
                                                                                                                                                                                        Participant

                                                                                                                                                                                          Yeah, I hope too.

                                                                                                                                                                                          Today's treatment is put off to next tuesday, if my rash can be well controlled.

                                                                                                                                                                                          Do not look down at the rashes..

                                                                                                                                                                                        jamieth29
                                                                                                                                                                                        Participant
                                                                                                                                                                                          Hope that the side effects are because the drugs are working for you. Starting the braf inhibitors tomorrow for a month to hopefully knock down what disease i have then surgically go after it. Here’s to fighting the good fight my friend!
                                                                                                                                                                                          jamieth29
                                                                                                                                                                                          Participant
                                                                                                                                                                                            Hope that the side effects are because the drugs are working for you. Starting the braf inhibitors tomorrow for a month to hopefully knock down what disease i have then surgically go after it. Here’s to fighting the good fight my friend!
                                                                                                                                                                                            dfeng
                                                                                                                                                                                            Participant

                                                                                                                                                                                              I just did my second infusion today and back home.

                                                                                                                                                                                              My rash was not 100% gone, so at beginning the nurse was still very concern about it.

                                                                                                                                                                                              After my doctor and another specialist checked again they agree what left were not all due to the treatment and those old one were going away, so I was cleared for the treatment.

                                                                                                                                                                                              So far so good. I can feel that I am weaker than what I was at the first infusion, but the med is having less impact on me. I can drive home alone.

                                                                                                                                                                                              Let us see how I am going to be tonight.

                                                                                                                                                                                                dfeng
                                                                                                                                                                                                Participant

                                                                                                                                                                                                  Better than the first time, still got nightmare and fever, but lighter.

                                                                                                                                                                                                  dfeng
                                                                                                                                                                                                  Participant

                                                                                                                                                                                                    Fatigue, muscleache. This is the major issue till now. I am back to work today and everything else is good.

                                                                                                                                                                                                    dfeng
                                                                                                                                                                                                    Participant

                                                                                                                                                                                                      Fatigue, muscleache. This is the major issue till now. I am back to work today and everything else is good.

                                                                                                                                                                                                      dfeng
                                                                                                                                                                                                      Participant

                                                                                                                                                                                                        Fatigue, muscleache. This is the major issue till now. I am back to work today and everything else is good.

                                                                                                                                                                                                        dfeng
                                                                                                                                                                                                        Participant

                                                                                                                                                                                                          I noticed that my blood is thinner? or skin is eaiser to bleed.

                                                                                                                                                                                                          During last infusion, at the first try the nurse didn't make it, so she left a .. on my arm with bandit without pressure. Usually it became black and blue in few days, but mine… still red in a week.

                                                                                                                                                                                                          A small cut on my nose bleed crazily. I have to put something pressed on it to stop it.

                                                                                                                                                                                                          And the worst is I noticed one day I have black excrement, looked like bleeding in stomach, I think it is because of my surgery wound again since I felt pain in that area the day before.

                                                                                                                                                                                                           

                                                                                                                                                                                                          jamieth29
                                                                                                                                                                                                          Participant
                                                                                                                                                                                                            Dfeng,
                                                                                                                                                                                                            I’m sure you told your doctor about the black stuff…if not i would immediately. I have read about ipi and digestive track issues and ipi is noted for that. From what i read i wouldn’t worry about being treated for adverse events. Studies have shown missing a dose or taking steroids to stop the event is much better than letting it get out of hand and trying to tough it out.
                                                                                                                                                                                                            Best of luck,
                                                                                                                                                                                                            Jamie
                                                                                                                                                                                                            jamieth29
                                                                                                                                                                                                            Participant
                                                                                                                                                                                                              Dfeng,
                                                                                                                                                                                                              I’m sure you told your doctor about the black stuff…if not i would immediately. I have read about ipi and digestive track issues and ipi is noted for that. From what i read i wouldn’t worry about being treated for adverse events. Studies have shown missing a dose or taking steroids to stop the event is much better than letting it get out of hand and trying to tough it out.
                                                                                                                                                                                                              Best of luck,
                                                                                                                                                                                                              Jamie
                                                                                                                                                                                                              jamieth29
                                                                                                                                                                                                              Participant
                                                                                                                                                                                                                Dfeng,
                                                                                                                                                                                                                I’m sure you told your doctor about the black stuff…if not i would immediately. I have read about ipi and digestive track issues and ipi is noted for that. From what i read i wouldn’t worry about being treated for adverse events. Studies have shown missing a dose or taking steroids to stop the event is much better than letting it get out of hand and trying to tough it out.
                                                                                                                                                                                                                Best of luck,
                                                                                                                                                                                                                Jamie
                                                                                                                                                                                                                dfeng
                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                  I noticed that my blood is thinner? or skin is eaiser to bleed.

                                                                                                                                                                                                                  During last infusion, at the first try the nurse didn't make it, so she left a .. on my arm with bandit without pressure. Usually it became black and blue in few days, but mine… still red in a week.

                                                                                                                                                                                                                  A small cut on my nose bleed crazily. I have to put something pressed on it to stop it.

                                                                                                                                                                                                                  And the worst is I noticed one day I have black excrement, looked like bleeding in stomach, I think it is because of my surgery wound again since I felt pain in that area the day before.

                                                                                                                                                                                                                   

                                                                                                                                                                                                                  dfeng
                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                    I noticed that my blood is thinner? or skin is eaiser to bleed.

                                                                                                                                                                                                                    During last infusion, at the first try the nurse didn't make it, so she left a .. on my arm with bandit without pressure. Usually it became black and blue in few days, but mine… still red in a week.

                                                                                                                                                                                                                    A small cut on my nose bleed crazily. I have to put something pressed on it to stop it.

                                                                                                                                                                                                                    And the worst is I noticed one day I have black excrement, looked like bleeding in stomach, I think it is because of my surgery wound again since I felt pain in that area the day before.

                                                                                                                                                                                                                     

                                                                                                                                                                                                                    dfeng
                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                      Better than the first time, still got nightmare and fever, but lighter.

                                                                                                                                                                                                                      dfeng
                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                        Better than the first time, still got nightmare and fever, but lighter.

                                                                                                                                                                                                                        dfeng
                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                          I was in pain this afternoon, still stomach area again. I had to rest in bed for 3 hours until it left.

                                                                                                                                                                                                                          dfeng
                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                            Have muscle sour these days but not heavy. One week from next infusion and my strength is coming back.

                                                                                                                                                                                                                            dfeng
                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                              Have muscle sour these days but not heavy. One week from next infusion and my strength is coming back.

                                                                                                                                                                                                                              dfeng
                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                Have muscle sour these days but not heavy. One week from next infusion and my strength is coming back.

                                                                                                                                                                                                                                dfeng
                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                  I was in pain this afternoon, still stomach area again. I had to rest in bed for 3 hours until it left.

                                                                                                                                                                                                                                  dfeng
                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                    I was in pain this afternoon, still stomach area again. I had to rest in bed for 3 hours until it left.

                                                                                                                                                                                                                                  dfeng
                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                    I just did my second infusion today and back home.

                                                                                                                                                                                                                                    My rash was not 100% gone, so at beginning the nurse was still very concern about it.

                                                                                                                                                                                                                                    After my doctor and another specialist checked again they agree what left were not all due to the treatment and those old one were going away, so I was cleared for the treatment.

                                                                                                                                                                                                                                    So far so good. I can feel that I am weaker than what I was at the first infusion, but the med is having less impact on me. I can drive home alone.

                                                                                                                                                                                                                                    Let us see how I am going to be tonight.

                                                                                                                                                                                                                                    dfeng
                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                      I just did my second infusion today and back home.

                                                                                                                                                                                                                                      My rash was not 100% gone, so at beginning the nurse was still very concern about it.

                                                                                                                                                                                                                                      After my doctor and another specialist checked again they agree what left were not all due to the treatment and those old one were going away, so I was cleared for the treatment.

                                                                                                                                                                                                                                      So far so good. I can feel that I am weaker than what I was at the first infusion, but the med is having less impact on me. I can drive home alone.

                                                                                                                                                                                                                                      Let us see how I am going to be tonight.

                                                                                                                                                                                                                                      dfeng
                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                        The third infusion is done.

                                                                                                                                                                                                                                        Less fever and headache, nightmare.

                                                                                                                                                                                                                                        But rushes jump out immediately. 

                                                                                                                                                                                                                                        Very tired on the second day.

                                                                                                                                                                                                                                          dfeng
                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                            Very tired for the past three days. Got to take of sick wife and little kids, right after the treatment. 

                                                                                                                                                                                                                                            Really tough days. But I am recovering.

                                                                                                                                                                                                                                            stars
                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                              Sorry to hear your wife and kids aren't well, and that you are still suffering some side effects. Hope you all feel better soon. One day at time, my friend. Thanks for your updates.

                                                                                                                                                                                                                                              Stars

                                                                                                                                                                                                                                              jamieth29
                                                                                                                                                                                                                                              Participant
                                                                                                                                                                                                                                                Dfeng,
                                                                                                                                                                                                                                                How many total infusions 4? So 3rd infusion was definitely easier than first?
                                                                                                                                                                                                                                                dfeng
                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                  Yes, totally 4. There will be only one left in the end of september. 

                                                                                                                                                                                                                                                  And yes, the side effect is definitely easier than first.

                                                                                                                                                                                                                                                  dfeng
                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                    Yes, totally 4. There will be only one left in the end of september. 

                                                                                                                                                                                                                                                    And yes, the side effect is definitely easier than first.

                                                                                                                                                                                                                                                    dfeng
                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                      Yes, totally 4. There will be only one left in the end of september. 

                                                                                                                                                                                                                                                      And yes, the side effect is definitely easier than first.

                                                                                                                                                                                                                                                      jamieth29
                                                                                                                                                                                                                                                      Participant
                                                                                                                                                                                                                                                        Dfeng,
                                                                                                                                                                                                                                                        How many total infusions 4? So 3rd infusion was definitely easier than first?
                                                                                                                                                                                                                                                        jamieth29
                                                                                                                                                                                                                                                        Participant
                                                                                                                                                                                                                                                          Dfeng,
                                                                                                                                                                                                                                                          How many total infusions 4? So 3rd infusion was definitely easier than first?
                                                                                                                                                                                                                                                          stars
                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                            Sorry to hear your wife and kids aren't well, and that you are still suffering some side effects. Hope you all feel better soon. One day at time, my friend. Thanks for your updates.

                                                                                                                                                                                                                                                            Stars

                                                                                                                                                                                                                                                            stars
                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                              Sorry to hear your wife and kids aren't well, and that you are still suffering some side effects. Hope you all feel better soon. One day at time, my friend. Thanks for your updates.

                                                                                                                                                                                                                                                              Stars

                                                                                                                                                                                                                                                              dfeng
                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                Very tired for the past three days. Got to take of sick wife and little kids, right after the treatment. 

                                                                                                                                                                                                                                                                Really tough days. But I am recovering.

                                                                                                                                                                                                                                                                dfeng
                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                  Very tired for the past three days. Got to take of sick wife and little kids, right after the treatment. 

                                                                                                                                                                                                                                                                  Really tough days. But I am recovering.

                                                                                                                                                                                                                                                                  dfeng
                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                    Low fever for two days. It might because of flu, but muscle ache is tough.

                                                                                                                                                                                                                                                                    dfeng
                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                      Tomorrow will be the last infusion.

                                                                                                                                                                                                                                                                      Still got rashes poping up and itching. Fatigure is the main issue right now.

                                                                                                                                                                                                                                                                      dfeng
                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                        Tomorrow will be the last infusion.

                                                                                                                                                                                                                                                                        Still got rashes poping up and itching. Fatigure is the main issue right now.

                                                                                                                                                                                                                                                                        dfeng
                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                          Tomorrow will be the last infusion.

                                                                                                                                                                                                                                                                          Still got rashes poping up and itching. Fatigure is the main issue right now.

                                                                                                                                                                                                                                                                          dfeng
                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                            Low fever for two days. It might because of flu, but muscle ache is tough.

                                                                                                                                                                                                                                                                            dfeng
                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                              Low fever for two days. It might because of flu, but muscle ache is tough.

                                                                                                                                                                                                                                                                            dfeng
                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                              The third infusion is done.

                                                                                                                                                                                                                                                                              Less fever and headache, nightmare.

                                                                                                                                                                                                                                                                              But rushes jump out immediately. 

                                                                                                                                                                                                                                                                              Very tired on the second day.

                                                                                                                                                                                                                                                                              dfeng
                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                The third infusion is done.

                                                                                                                                                                                                                                                                                Less fever and headache, nightmare.

                                                                                                                                                                                                                                                                                But rushes jump out immediately. 

                                                                                                                                                                                                                                                                                Very tired on the second day.

                                                                                                                                                                                                                                                                                dfeng
                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                  The second day of the last combo infusion and I am still at home resting.

                                                                                                                                                                                                                                                                                  It might because of the weather, but I feel very tired and do not have appetite.

                                                                                                                                                                                                                                                                                  Low fever, sweating, rashes, so far.

                                                                                                                                                                                                                                                                                    jamieth29
                                                                                                                                                                                                                                                                                    Participant
                                                                                                                                                                                                                                                                                      Hope things work out Dfeng, do you have a scan date yet? Did you travel to mskcc for trial or you live locally? Stay strong!
                                                                                                                                                                                                                                                                                      dfeng
                                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                                        Yes I am going to have scan in three weeks. I need to travel to mskcc, but not that far, about two hours.

                                                                                                                                                                                                                                                                                        Thank you, and best wishes!

                                                                                                                                                                                                                                                                                        dfeng
                                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                                          Yes I am going to have scan in three weeks. I need to travel to mskcc, but not that far, about two hours.

                                                                                                                                                                                                                                                                                          Thank you, and best wishes!

                                                                                                                                                                                                                                                                                          dfeng
                                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                                            Yes I am going to have scan in three weeks. I need to travel to mskcc, but not that far, about two hours.

                                                                                                                                                                                                                                                                                            Thank you, and best wishes!

                                                                                                                                                                                                                                                                                            jamieth29
                                                                                                                                                                                                                                                                                            Participant
                                                                                                                                                                                                                                                                                              Hope things work out Dfeng, do you have a scan date yet? Did you travel to mskcc for trial or you live locally? Stay strong!
                                                                                                                                                                                                                                                                                              jamieth29
                                                                                                                                                                                                                                                                                              Participant
                                                                                                                                                                                                                                                                                                Hope things work out Dfeng, do you have a scan date yet? Did you travel to mskcc for trial or you live locally? Stay strong!
                                                                                                                                                                                                                                                                                                dfeng
                                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                                  The third, way better. Some muscle ache and diarreah. That is it.

                                                                                                                                                                                                                                                                                                   

                                                                                                                                                                                                                                                                                                  Scan would be on Firday. Then the second cycle will begin. Infusion for every two weeks.

                                                                                                                                                                                                                                                                                                  dfeng
                                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                                    Have to move to other trials.

                                                                                                                                                                                                                                                                                                    The combo doesn't really control the growing of tumors. 

                                                                                                                                                                                                                                                                                                    I am waiting for the screen for another trial, it takes two weeks to check whether I am eligiable.

                                                                                                                                                                                                                                                                                                     

                                                                                                                                                                                                                                                                                                    jamieth29
                                                                                                                                                                                                                                                                                                    Participant
                                                                                                                                                                                                                                                                                                      Hey,
                                                                                                                                                                                                                                                                                                      Just wanted to let you know there is people on here thinking about you. Keep your head high, I know its got to be tough right now but you have other options so there is hope.
                                                                                                                                                                                                                                                                                                      Jamie
                                                                                                                                                                                                                                                                                                      jamieth29
                                                                                                                                                                                                                                                                                                      Participant
                                                                                                                                                                                                                                                                                                        Hey,
                                                                                                                                                                                                                                                                                                        Just wanted to let you know there is people on here thinking about you. Keep your head high, I know its got to be tough right now but you have other options so there is hope.
                                                                                                                                                                                                                                                                                                        Jamie
                                                                                                                                                                                                                                                                                                        jamieth29
                                                                                                                                                                                                                                                                                                        Participant
                                                                                                                                                                                                                                                                                                          Hey,
                                                                                                                                                                                                                                                                                                          Just wanted to let you know there is people on here thinking about you. Keep your head high, I know its got to be tough right now but you have other options so there is hope.
                                                                                                                                                                                                                                                                                                          Jamie
                                                                                                                                                                                                                                                                                                          dfeng
                                                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                                                            Have to move to other trials.

                                                                                                                                                                                                                                                                                                            The combo doesn't really control the growing of tumors. 

                                                                                                                                                                                                                                                                                                            I am waiting for the screen for another trial, it takes two weeks to check whether I am eligiable.

                                                                                                                                                                                                                                                                                                             

                                                                                                                                                                                                                                                                                                            dfeng
                                                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                                                              Have to move to other trials.

                                                                                                                                                                                                                                                                                                              The combo doesn't really control the growing of tumors. 

                                                                                                                                                                                                                                                                                                              I am waiting for the screen for another trial, it takes two weeks to check whether I am eligiable.

                                                                                                                                                                                                                                                                                                               

                                                                                                                                                                                                                                                                                                              dfeng
                                                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                                                The third, way better. Some muscle ache and diarreah. That is it.

                                                                                                                                                                                                                                                                                                                 

                                                                                                                                                                                                                                                                                                                Scan would be on Firday. Then the second cycle will begin. Infusion for every two weeks.

                                                                                                                                                                                                                                                                                                                dfeng
                                                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                                                  The third, way better. Some muscle ache and diarreah. That is it.

                                                                                                                                                                                                                                                                                                                   

                                                                                                                                                                                                                                                                                                                  Scan would be on Firday. Then the second cycle will begin. Infusion for every two weeks.

                                                                                                                                                                                                                                                                                                                dfeng
                                                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                                                  The second day of the last combo infusion and I am still at home resting.

                                                                                                                                                                                                                                                                                                                  It might because of the weather, but I feel very tired and do not have appetite.

                                                                                                                                                                                                                                                                                                                  Low fever, sweating, rashes, so far.

                                                                                                                                                                                                                                                                                                                  dfeng
                                                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                                                    The second day of the last combo infusion and I am still at home resting.

                                                                                                                                                                                                                                                                                                                    It might because of the weather, but I feel very tired and do not have appetite.

                                                                                                                                                                                                                                                                                                                    Low fever, sweating, rashes, so far.

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