We finally have our drug
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We finally have our drug

› Forums › General Melanoma Community › We finally have our drug

  • Post
    • October 15, 2016 at 4:25 pm
    snow white
    Participant

    Dad is still here at the hospital.  The progression is very slow. He still cannot move well, walk, feed himself, get on the toilet etc.  Its so scary.  Mom or I are here with him 24/7. Not sleeping more that about 1 1/2 hours at a time.  He is so miserable.  Last night he told me he wanted to die.  I know he is just frustrated and miserable, but I hate hearing him say that. 

    So the game plan is to start him on NIVO (I hope I have all of the names correct, the last few days is a blur).  The thought process is that he is 72 years old, just had brain surgery and is recoving from it.  We need to get somthing going ASAP. The Ono (that Dad likes) met with the Brain tumor board that included a Melanoma specialist yesterday and that is the conclusion that they all came to, his Ono is also in communication with the doc at City of Hope and USC.  They feel that he will tolerate 1 drug better right now instead of starting on a combo of Nivo/ipi? and they feel that we can add anthother drug later if he doesn't respond well.  The Brain surgeon hopes that he will be released this coming Thursday (we shall see) and they are hoping to start with the NIVO on Friday.

    Thats the latest.

Viewing 11 reply threads
  • Replies
      • October 15, 2016 at 9:03 pm
      keepthefaith11
      Participant
      I think this sounds like a good plan. Most people handle Nevo very well compared to yervoy. My dad was on yervoy this past spring when he was still stage 3 and only got through 2 infusions before his liver enzymes skyrocketed. He is going in for his third Opdivo treatment this week and has been handling the previous two well.

      I know how scary it feels to see your dad in this condition, especially since only a couple of weeks ago he was completely fine. After my dad’s first and second seizures I seriously thought that we had lost him as far as his cognitive and physical abilities. He could not move or speak for about a week. And couldn’t even feed himself. After about 3 weeks he was back home and moving about and speaking again. He went back to his normal self until the second seizure hit two months later. After that seizure he was in even worse shape. It is so horrifying to see, but keep faith that your dad will get back to normal again within a few weeks. It has now been three weeks since my Dad’s latest seizure and he is going for walks and speaking really well already. And he gets better every day. The brain can do crazy things, but it does have the capability to recover.

      Once you get going with treatment it will also feel better. At least then you are proactive doing something to stop this horrible Beast. Keep us updated.

      Annie

      • October 15, 2016 at 9:03 pm
      keepthefaith11
      Participant
      I think this sounds like a good plan. Most people handle Nevo very well compared to yervoy. My dad was on yervoy this past spring when he was still stage 3 and only got through 2 infusions before his liver enzymes skyrocketed. He is going in for his third Opdivo treatment this week and has been handling the previous two well.

      I know how scary it feels to see your dad in this condition, especially since only a couple of weeks ago he was completely fine. After my dad’s first and second seizures I seriously thought that we had lost him as far as his cognitive and physical abilities. He could not move or speak for about a week. And couldn’t even feed himself. After about 3 weeks he was back home and moving about and speaking again. He went back to his normal self until the second seizure hit two months later. After that seizure he was in even worse shape. It is so horrifying to see, but keep faith that your dad will get back to normal again within a few weeks. It has now been three weeks since my Dad’s latest seizure and he is going for walks and speaking really well already. And he gets better every day. The brain can do crazy things, but it does have the capability to recover.

      Once you get going with treatment it will also feel better. At least then you are proactive doing something to stop this horrible Beast. Keep us updated.

      Annie

      • October 15, 2016 at 9:03 pm
      keepthefaith11
      Participant
      I think this sounds like a good plan. Most people handle Nevo very well compared to yervoy. My dad was on yervoy this past spring when he was still stage 3 and only got through 2 infusions before his liver enzymes skyrocketed. He is going in for his third Opdivo treatment this week and has been handling the previous two well.

      I know how scary it feels to see your dad in this condition, especially since only a couple of weeks ago he was completely fine. After my dad’s first and second seizures I seriously thought that we had lost him as far as his cognitive and physical abilities. He could not move or speak for about a week. And couldn’t even feed himself. After about 3 weeks he was back home and moving about and speaking again. He went back to his normal self until the second seizure hit two months later. After that seizure he was in even worse shape. It is so horrifying to see, but keep faith that your dad will get back to normal again within a few weeks. It has now been three weeks since my Dad’s latest seizure and he is going for walks and speaking really well already. And he gets better every day. The brain can do crazy things, but it does have the capability to recover.

      Once you get going with treatment it will also feel better. At least then you are proactive doing something to stop this horrible Beast. Keep us updated.

      Annie

      • October 15, 2016 at 10:10 pm
      snow white
      Participant

      OOPS.  I must be tired, I posted this anonymous by accident.

       

      Its Jennifer!

        • October 15, 2016 at 11:10 pm
        keepthefaith11
        Participant
        I knew it was you, no worries..:)
        • October 15, 2016 at 11:10 pm
        keepthefaith11
        Participant
        I knew it was you, no worries..:)
        • October 15, 2016 at 11:10 pm
        keepthefaith11
        Participant
        I knew it was you, no worries..:)
      • October 15, 2016 at 10:10 pm
      snow white
      Participant

      OOPS.  I must be tired, I posted this anonymous by accident.

       

      Its Jennifer!

      • October 15, 2016 at 10:10 pm
      snow white
      Participant

      OOPS.  I must be tired, I posted this anonymous by accident.

       

      Its Jennifer!

      • October 16, 2016 at 8:18 am
      debwray
      Participant

      So very sorry to hear things are still so very difficult for your parents and yourself . The decision to start nivo asap sounds like a good one. Hoping your Dad has an uneventful rapid recovery.  Just wish you weren't in this position. Try to get some sleep if you can. It looks like it will be another long week/ marathon and it is easy to get run down and I'll yourself.

      Thinking of you all,

      Deb

       

      • October 16, 2016 at 8:18 am
      debwray
      Participant

      So very sorry to hear things are still so very difficult for your parents and yourself . The decision to start nivo asap sounds like a good one. Hoping your Dad has an uneventful rapid recovery.  Just wish you weren't in this position. Try to get some sleep if you can. It looks like it will be another long week/ marathon and it is easy to get run down and I'll yourself.

      Thinking of you all,

      Deb

       

      • October 16, 2016 at 8:18 am
      debwray
      Participant

      So very sorry to hear things are still so very difficult for your parents and yourself . The decision to start nivo asap sounds like a good one. Hoping your Dad has an uneventful rapid recovery.  Just wish you weren't in this position. Try to get some sleep if you can. It looks like it will be another long week/ marathon and it is easy to get run down and I'll yourself.

      Thinking of you all,

      Deb

       

      • October 17, 2016 at 5:48 pm
      cancersnewnormal
      Participant

      : (  … Hospitals are not good for lifting spirits or getting sleep! Sending all of the strength I can muster that he is able to get home this week, and onto the Nivo. Happy to hear that his docs are in contact with the specialists, and the tumor board is keeping tabs on his case. All of my surgeries and treatments have been done at USC. Great minds there. : )

      • October 17, 2016 at 5:48 pm
      cancersnewnormal
      Participant

      : (  … Hospitals are not good for lifting spirits or getting sleep! Sending all of the strength I can muster that he is able to get home this week, and onto the Nivo. Happy to hear that his docs are in contact with the specialists, and the tumor board is keeping tabs on his case. All of my surgeries and treatments have been done at USC. Great minds there. : )

      • October 17, 2016 at 5:48 pm
      cancersnewnormal
      Participant

      : (  … Hospitals are not good for lifting spirits or getting sleep! Sending all of the strength I can muster that he is able to get home this week, and onto the Nivo. Happy to hear that his docs are in contact with the specialists, and the tumor board is keeping tabs on his case. All of my surgeries and treatments have been done at USC. Great minds there. : )

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