Treatment plan is made
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Treatment plan is made

› Forums › General Melanoma Community › Treatment plan is made

  • Post
    • July 15, 2015 at 1:00 pm
    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
      • July 15, 2015 at 4:20 pm
      jamieth29
      Participant
      D.Feng
      your not included in that average! I hope things go well for you…what plan of treatment are you getting?
        • July 15, 2015 at 4:55 pm
        dfeng
        Participant

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

         

        Many thanks for your encourage!

         

        • July 15, 2015 at 5:25 pm
        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!

        • July 15, 2015 at 5:25 pm
        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!

        • July 15, 2015 at 5:25 pm
        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!

        • July 15, 2015 at 6:17 pm
        ed williams
        Participant

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

        • July 15, 2015 at 6:17 pm
        ed williams
        Participant

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

        • July 15, 2015 at 6:17 pm
        ed williams
        Participant

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

        • July 15, 2015 at 4:55 pm
        dfeng
        Participant

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

         

        Many thanks for your encourage!

         

        • July 15, 2015 at 4:55 pm
        dfeng
        Participant

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

         

        Many thanks for your encourage!

         

      • July 15, 2015 at 4:20 pm
      jamieth29
      Participant
      D.Feng
      your not included in that average! I hope things go well for you…what plan of treatment are you getting?
      • July 15, 2015 at 4:20 pm
      jamieth29
      Participant
      D.Feng
      your not included in that average! I hope things go well for you…what plan of treatment are you getting?
      • July 15, 2015 at 5:10 pm
      Bubbles
      Participant

      D. Feng,

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

        • July 15, 2015 at 9:29 pm
        tschmith
        Participant

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

        Best wishes!   Terrie

        • July 15, 2015 at 9:29 pm
        tschmith
        Participant

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

        Best wishes!   Terrie

        • July 15, 2015 at 9:29 pm
        tschmith
        Participant

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

        Best wishes!   Terrie

      • July 15, 2015 at 5:10 pm
      Bubbles
      Participant

      D. Feng,

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

      • July 15, 2015 at 5:10 pm
      Bubbles
      Participant

      D. Feng,

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

      • July 16, 2015 at 5:48 pm
      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.

       

       

      • July 16, 2015 at 5:48 pm
      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.

       

       

        • July 23, 2015 at 3:02 pm
        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. 

        • July 24, 2015 at 11:42 am
        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.

        • July 24, 2015 at 11:42 am
        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.

        • July 24, 2015 at 11:42 am
        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.

        • July 23, 2015 at 3:02 pm
        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. 

        • July 23, 2015 at 3:02 pm
        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. 

      • July 16, 2015 at 5:48 pm
      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.

       

       

      • July 29, 2015 at 1:23 am
      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.

      • July 29, 2015 at 1:23 am
      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.

      • July 29, 2015 at 1:23 am
      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.

      • July 30, 2015 at 2:18 pm
      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.

        • July 31, 2015 at 5:06 pm
        dfeng
        Participant

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

        • July 31, 2015 at 5:06 pm
        dfeng
        Participant

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

        • August 1, 2015 at 10:58 pm
        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!
        • August 2, 2015 at 9:23 am
        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!

        • August 3, 2015 at 12:27 pm
        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.

        • August 4, 2015 at 11:12 pm
        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

        • August 5, 2015 at 8:00 pm
        dfeng
        Participant

        I put the link in my signature area. 

        • August 5, 2015 at 8:00 pm
        dfeng
        Participant

        I put the link in my signature area. 

        • August 5, 2015 at 8:00 pm
        dfeng
        Participant

        I put the link in my signature area. 

        • August 4, 2015 at 11:12 pm
        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

        • August 4, 2015 at 11:12 pm
        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

        • August 3, 2015 at 12:27 pm
        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.

        • August 3, 2015 at 12:27 pm
        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.

        • August 2, 2015 at 9:23 am
        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!

        • August 2, 2015 at 9:23 am
        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!

        • August 1, 2015 at 10:58 pm
        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!
        • August 1, 2015 at 10:58 pm
        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!
        • July 31, 2015 at 5:06 pm
        dfeng
        Participant

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

      • July 30, 2015 at 2:18 pm
      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.

      • July 30, 2015 at 2:18 pm
      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.

      • August 3, 2015 at 12:29 pm
      dfeng
      Participant

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

      Cold water washing helps. 

        • August 5, 2015 at 8:03 pm
        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.

        • August 5, 2015 at 8:03 pm
        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.

        • August 5, 2015 at 8:03 pm
        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.

      • August 3, 2015 at 12:29 pm
      dfeng
      Participant

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

      Cold water washing helps. 

      • August 3, 2015 at 12:29 pm
      dfeng
      Participant

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

      Cold water washing helps. 

      • August 5, 2015 at 8:00 pm
      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.

        • August 5, 2015 at 9:07 pm
        jamieth29
        Participant
        How long until a scan? This trial may be in my future…thanks for the updates!
        • August 6, 2015 at 12:51 am
        dfeng
        Participant

        It should be in three months.

        • August 6, 2015 at 12:51 am
        dfeng
        Participant

        It should be in three months.

        • August 6, 2015 at 12:51 am
        dfeng
        Participant

        It should be in three months.

        • August 5, 2015 at 9:07 pm
        jamieth29
        Participant
        How long until a scan? This trial may be in my future…thanks for the updates!
        • August 5, 2015 at 9:07 pm
        jamieth29
        Participant
        How long until a scan? This trial may be in my future…thanks for the updates!
      • August 5, 2015 at 8:00 pm
      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.

      • August 5, 2015 at 8:00 pm
      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.

      • August 8, 2015 at 2:00 am
      dfeng
      Participant

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

        • August 8, 2015 at 2:08 pm
        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.

        • August 8, 2015 at 2:08 pm
        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.

        • August 8, 2015 at 2:08 pm
        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.

      • August 8, 2015 at 2:00 am
      dfeng
      Participant

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

      • August 8, 2015 at 2:00 am
      dfeng
      Participant

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

      • August 11, 2015 at 12:26 am
      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!
        • August 11, 2015 at 10:55 pm
        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..

        • August 13, 2015 at 5:08 pm
        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.

         

        • August 13, 2015 at 5:08 pm
        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.

         

        • August 13, 2015 at 5:08 pm
        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.

         

        • August 14, 2015 at 5:36 pm
        dfeng
        Participant

        The third day on cream. Rash is leaving.

        Only small spots itching and easy control.

         

        • August 14, 2015 at 5:36 pm
        dfeng
        Participant

        The third day on cream. Rash is leaving.

        Only small spots itching and easy control.

         

        • August 14, 2015 at 10:59 pm
        jamieth29
        Participant
        Good luck on Tuesday!
        • August 14, 2015 at 10:59 pm
        jamieth29
        Participant
        Good luck on Tuesday!
        • August 14, 2015 at 10:59 pm
        jamieth29
        Participant
        Good luck on Tuesday!
        • August 17, 2015 at 9:18 pm
        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

        • August 17, 2015 at 9:18 pm
        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

        • August 17, 2015 at 9:18 pm
        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

        • August 14, 2015 at 5:36 pm
        dfeng
        Participant

        The third day on cream. Rash is leaving.

        Only small spots itching and easy control.

         

        • August 11, 2015 at 10:55 pm
        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..

        • August 11, 2015 at 10:55 pm
        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..

      • August 11, 2015 at 12:26 am
      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!
      • August 11, 2015 at 12:26 am
      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!
      • August 18, 2015 at 11:47 pm
      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.

        • August 19, 2015 at 4:58 pm
        dfeng
        Participant

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

        • August 20, 2015 at 3:08 pm
        dfeng
        Participant

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

        • August 20, 2015 at 3:08 pm
        dfeng
        Participant

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

        • August 20, 2015 at 3:08 pm
        dfeng
        Participant

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

        • August 25, 2015 at 9:08 pm
        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.

         

        • August 25, 2015 at 11:34 pm
        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
        • August 25, 2015 at 11:34 pm
        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
        • August 25, 2015 at 11:34 pm
        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
        • August 25, 2015 at 9:08 pm
        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.

         

        • August 25, 2015 at 9:08 pm
        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.

         

        • August 19, 2015 at 4:58 pm
        dfeng
        Participant

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

        • August 19, 2015 at 4:58 pm
        dfeng
        Participant

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

        • August 29, 2015 at 10:23 pm
        dfeng
        Participant

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

        • September 2, 2015 at 6:23 pm
        dfeng
        Participant

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

        • September 2, 2015 at 6:23 pm
        dfeng
        Participant

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

        • September 2, 2015 at 6:23 pm
        dfeng
        Participant

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

        • August 29, 2015 at 10:23 pm
        dfeng
        Participant

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

        • August 29, 2015 at 10:23 pm
        dfeng
        Participant

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

      • August 18, 2015 at 11:47 pm
      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.

      • August 18, 2015 at 11:47 pm
      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.

      • September 9, 2015 at 7:53 pm
      dfeng
      Participant

      The third infusion is done.

      Less fever and headache, nightmare.

      But rushes jump out immediately. 

      Very tired on the second day.

      • September 9, 2015 at 7:53 pm
      dfeng
      Participant

      The third infusion is done.

      Less fever and headache, nightmare.

      But rushes jump out immediately. 

      Very tired on the second day.

        • September 11, 2015 at 5:23 pm
        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.

        • September 11, 2015 at 5:23 pm
        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.

        • September 13, 2015 at 8:51 am
        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

        • September 13, 2015 at 8:51 am
        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

        • September 13, 2015 at 11:13 pm
        jamieth29
        Participant
        Dfeng,
        How many total infusions 4? So 3rd infusion was definitely easier than first?
        • September 13, 2015 at 11:13 pm
        jamieth29
        Participant
        Dfeng,
        How many total infusions 4? So 3rd infusion was definitely easier than first?
        • September 13, 2015 at 11:13 pm
        jamieth29
        Participant
        Dfeng,
        How many total infusions 4? So 3rd infusion was definitely easier than first?
        • September 14, 2015 at 6:36 pm
        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.

        • September 14, 2015 at 6:36 pm
        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.

        • September 14, 2015 at 6:36 pm
        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.

        • September 13, 2015 at 8:51 am
        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

        • September 11, 2015 at 5:23 pm
        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.

        • September 25, 2015 at 6:46 pm
        dfeng
        Participant

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

        • September 25, 2015 at 6:46 pm
        dfeng
        Participant

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

        • September 28, 2015 at 3:45 pm
        dfeng
        Participant

        Tomorrow will be the last infusion.

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

        • September 28, 2015 at 3:45 pm
        dfeng
        Participant

        Tomorrow will be the last infusion.

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

        • September 28, 2015 at 3:45 pm
        dfeng
        Participant

        Tomorrow will be the last infusion.

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

        • September 25, 2015 at 6:46 pm
        dfeng
        Participant

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

      • September 9, 2015 at 7:53 pm
      dfeng
      Participant

      The third infusion is done.

      Less fever and headache, nightmare.

      But rushes jump out immediately. 

      Very tired on the second day.

      • September 30, 2015 at 4:48 pm
      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.

      • September 30, 2015 at 4:48 pm
      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.

        • September 30, 2015 at 5:59 pm
        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!
        • September 30, 2015 at 5:59 pm
        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!
        • September 30, 2015 at 10:09 pm
        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!

        • September 30, 2015 at 10:09 pm
        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!

        • September 30, 2015 at 10:09 pm
        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!

        • September 30, 2015 at 5:59 pm
        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!
        • October 1, 2015 at 9:04 pm
        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.

        • October 1, 2015 at 9:04 pm
        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.

        • October 1, 2015 at 9:04 pm
        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.

        • October 21, 2015 at 12:25 am
        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.

         

        • October 24, 2015 at 1:33 pm
        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
        • October 24, 2015 at 1:33 pm
        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
        • October 24, 2015 at 1:33 pm
        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
        • October 21, 2015 at 12:25 am
        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.

         

        • October 21, 2015 at 12:25 am
        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.

         

      • September 30, 2015 at 4:48 pm
      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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