bad news again
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bad news again

› Forums › General Melanoma Community › bad news again

  • Post
    • February 14, 2013 at 2:19 am
    bikerwife
    Participant

    the good time with z is over for us. no new tumors but ones he hss is growing.  ldh up to 537. no trial till finish with gamma knife. anti pd trails starts in march. so n the mean time its temador or abraxane.

    FInd out Monday.

    just shocking since HE seems to be doing so good 

    the good time with z is over for us. no new tumors but ones he hss is growing.  ldh up to 537. no trial till finish with gamma knife. anti pd trails starts in march. so n the mean time its temador or abraxane.

    FInd out Monday.

    just shocking since HE seems to be doing so good 

Viewing 14 reply threads
  • Replies
      • February 14, 2013 at 12:52 pm
      bikerwife
      Participant

      Guess no one knows what to say. i dont either. But i do need some support.

      • February 14, 2013 at 12:52 pm
      bikerwife
      Participant

      Guess no one knows what to say. i dont either. But i do need some support.

      • February 14, 2013 at 12:52 pm
      bikerwife
      Participant

      Guess no one knows what to say. i dont either. But i do need some support.

        • February 14, 2013 at 1:24 pm
        Phil S
        Participant
        Keep fighting! I know it’s hard and scary, but gamma knife and temodar can keep him holding for the next trial. We all understand your worry and fear but sometimes you have to fight melanoma one day at a time! Keep the faith and cherish each day he is feeling well! God Bless and Big Hugs, Valerie (Phil’s wife)
        • February 14, 2013 at 1:24 pm
        Phil S
        Participant
        Keep fighting! I know it’s hard and scary, but gamma knife and temodar can keep him holding for the next trial. We all understand your worry and fear but sometimes you have to fight melanoma one day at a time! Keep the faith and cherish each day he is feeling well! God Bless and Big Hugs, Valerie (Phil’s wife)
        • February 14, 2013 at 1:24 pm
        Phil S
        Participant
        Keep fighting! I know it’s hard and scary, but gamma knife and temodar can keep him holding for the next trial. We all understand your worry and fear but sometimes you have to fight melanoma one day at a time! Keep the faith and cherish each day he is feeling well! God Bless and Big Hugs, Valerie (Phil’s wife)
      • February 14, 2013 at 1:23 pm
      Owl
      Participant

      You are right, difficult what to say, I know these shocks and I know how difficult it is to find back to hope. Anytime this happened I promised myself to be prepared for the next bad news, but it doesn't work. I believe it is because there is always hope and I always decided to stick to that.

      So, stick to the hope!

      Anti-PD1 trial in march does not seem to be too far away and temodar seems to help a lot of people with brain mets. I saw the responses to your last post, there are a lot of people who can really help here.

      Is your husband still on Zelboraf? The doctors we talked to said that they would stay on Zelboraf though there is a resist. It seems that there is probably still a response and it can keep those tumors under control.

      My thaughts are with you, keep fighting!

      Jenny

      • February 14, 2013 at 1:23 pm
      Owl
      Participant

      You are right, difficult what to say, I know these shocks and I know how difficult it is to find back to hope. Anytime this happened I promised myself to be prepared for the next bad news, but it doesn't work. I believe it is because there is always hope and I always decided to stick to that.

      So, stick to the hope!

      Anti-PD1 trial in march does not seem to be too far away and temodar seems to help a lot of people with brain mets. I saw the responses to your last post, there are a lot of people who can really help here.

      Is your husband still on Zelboraf? The doctors we talked to said that they would stay on Zelboraf though there is a resist. It seems that there is probably still a response and it can keep those tumors under control.

      My thaughts are with you, keep fighting!

      Jenny

      • February 14, 2013 at 1:23 pm
      Owl
      Participant

      You are right, difficult what to say, I know these shocks and I know how difficult it is to find back to hope. Anytime this happened I promised myself to be prepared for the next bad news, but it doesn't work. I believe it is because there is always hope and I always decided to stick to that.

      So, stick to the hope!

      Anti-PD1 trial in march does not seem to be too far away and temodar seems to help a lot of people with brain mets. I saw the responses to your last post, there are a lot of people who can really help here.

      Is your husband still on Zelboraf? The doctors we talked to said that they would stay on Zelboraf though there is a resist. It seems that there is probably still a response and it can keep those tumors under control.

      My thaughts are with you, keep fighting!

      Jenny

      • February 14, 2013 at 1:23 pm
      aldakota22
      Participant

      Devestating news for sure.From what i have read there are new trials out there for people who Z" has stopped working.Maybe someone here can point you to one.Keep fighting.Always in my prayers.Beat the Beast.    Al

      • February 14, 2013 at 1:23 pm
      aldakota22
      Participant

      Devestating news for sure.From what i have read there are new trials out there for people who Z" has stopped working.Maybe someone here can point you to one.Keep fighting.Always in my prayers.Beat the Beast.    Al

      • February 14, 2013 at 1:23 pm
      aldakota22
      Participant

      Devestating news for sure.From what i have read there are new trials out there for people who Z" has stopped working.Maybe someone here can point you to one.Keep fighting.Always in my prayers.Beat the Beast.    Al

      • February 14, 2013 at 2:42 pm
      Fen
      Participant

      Fight like the Dickens and continue being the wonderful support you've been all along.  Difficult? Yes.  Impossible? No – you've been doing it magnificently so far.  So search for new clinical trials, get blisters surfing the net for info and be who you always have been.  And know that many of us are praying for you on this journey.

      • February 14, 2013 at 2:42 pm
      Fen
      Participant

      Fight like the Dickens and continue being the wonderful support you've been all along.  Difficult? Yes.  Impossible? No – you've been doing it magnificently so far.  So search for new clinical trials, get blisters surfing the net for info and be who you always have been.  And know that many of us are praying for you on this journey.

      • February 14, 2013 at 2:42 pm
      Fen
      Participant

      Fight like the Dickens and continue being the wonderful support you've been all along.  Difficult? Yes.  Impossible? No – you've been doing it magnificently so far.  So search for new clinical trials, get blisters surfing the net for info and be who you always have been.  And know that many of us are praying for you on this journey.

      • February 14, 2013 at 4:53 pm
      POW
      Participant

      If I were you, I would try to get him on an intermittent dosing schedule with Zelboraf. Probably 3 weeks on and 2 weeks off. There are some very early indications that this schedule allows the Z to continue working longer than does continuous dosing. Of course, if he is lined up for an anti-PD1 trial, make sure that he stops the Z according to the trail protocol– some say must be 30 days without Z before the trial start date, some say 2 weeks, they are all different.

      • February 14, 2013 at 4:53 pm
      POW
      Participant

      If I were you, I would try to get him on an intermittent dosing schedule with Zelboraf. Probably 3 weeks on and 2 weeks off. There are some very early indications that this schedule allows the Z to continue working longer than does continuous dosing. Of course, if he is lined up for an anti-PD1 trial, make sure that he stops the Z according to the trail protocol– some say must be 30 days without Z before the trial start date, some say 2 weeks, they are all different.

      • February 14, 2013 at 4:53 pm
      POW
      Participant

      If I were you, I would try to get him on an intermittent dosing schedule with Zelboraf. Probably 3 weeks on and 2 weeks off. There are some very early indications that this schedule allows the Z to continue working longer than does continuous dosing. Of course, if he is lined up for an anti-PD1 trial, make sure that he stops the Z according to the trail protocol– some say must be 30 days without Z before the trial start date, some say 2 weeks, they are all different.

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