How long does WBR “fog” and confusion last ?
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How long does WBR “fog” and confusion last ?

› Forums › Caregiver Community › How long does WBR “fog” and confusion last ?

  • Post
    • March 16, 2012 at 12:32 am
    AlisonC
    Participant

    A good friend is having WBR and temodar for recurrent brain mets following Novalis and craniotomy in November.  He's completely exhausted and very confused – having a hard time remembering what took place even an hour earlier.   Scary for him and so hard for his wife and caregivers.  Can anyone give an idea of how long that lasts for ?  The confusion has been sudden so seems WBR related.  Does it stop when the WBR does ?  Does it get better after a week or two ?  Any tips for caregivers welcome also. 

    AlisonC

    A good friend is having WBR and temodar for recurrent brain mets following Novalis and craniotomy in November.  He's completely exhausted and very confused – having a hard time remembering what took place even an hour earlier.   Scary for him and so hard for his wife and caregivers.  Can anyone give an idea of how long that lasts for ?  The confusion has been sudden so seems WBR related.  Does it stop when the WBR does ?  Does it get better after a week or two ?  Any tips for caregivers welcome also. 

    AlisonC

    Stage IIIB

    NED since 2001  

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  • Replies
      • March 16, 2012 at 12:50 am
      Phil S
      Participant
      You are looking for assurances that are hard to give. Every case is so different and individual, how many brain tumors does your friend have, what size are they, is he on steroids, was he acting confused prior to WBR. My husband completed WBR in November and did well. His only obvious symptoms were tiredness, that improved in time and hair loss. My husband was never confused or forgetful due to WBR. Phil also takes temodar as part of his biochemo. I would be asking your friend’s doctors the extent of his brain mets, and what they think is causing his confusion. Best of luck to his family, brain mets are scary, but sometimes there is light at the end of the tunnel. God bless, Valerie (Phil’s wife)
      • March 16, 2012 at 12:50 am
      Phil S
      Participant
      You are looking for assurances that are hard to give. Every case is so different and individual, how many brain tumors does your friend have, what size are they, is he on steroids, was he acting confused prior to WBR. My husband completed WBR in November and did well. His only obvious symptoms were tiredness, that improved in time and hair loss. My husband was never confused or forgetful due to WBR. Phil also takes temodar as part of his biochemo. I would be asking your friend’s doctors the extent of his brain mets, and what they think is causing his confusion. Best of luck to his family, brain mets are scary, but sometimes there is light at the end of the tunnel. God bless, Valerie (Phil’s wife)
        • March 16, 2012 at 2:38 am
        AlisonC
        Participant

        thanks Valerie – I saw your encouraging posts a few days back too.  The newly found mets (last week) are 3 small (<1mm) points plus possible residual activity in the beds of the 3 that were resected/SRS-ed in November.  it was a surveillance scan, not one done due to deterioration – the effects pretty much started the day after the WBR began, which is why we think it's related to th WBR –  since there's no evidence of extensive involvement that would account for this level of confusion otherwise.  He's on temodar as well.  I know from reading this board for the last few years that a lot of people have had cognitive impact from WBR so I'm hoping the response is transient (edema etc).  I don't know if he's back on steroids but he had a brutal time with them over Christmas following the last treatments so maybe he just is someone who gets really thrashed by treatments. Until this recurrence last week he was on zelboraf.  Thanks again for your input and great to hear Phil is doing so well ! 

        Alison 

        • March 16, 2012 at 2:38 am
        AlisonC
        Participant

        thanks Valerie – I saw your encouraging posts a few days back too.  The newly found mets (last week) are 3 small (<1mm) points plus possible residual activity in the beds of the 3 that were resected/SRS-ed in November.  it was a surveillance scan, not one done due to deterioration – the effects pretty much started the day after the WBR began, which is why we think it's related to th WBR –  since there's no evidence of extensive involvement that would account for this level of confusion otherwise.  He's on temodar as well.  I know from reading this board for the last few years that a lot of people have had cognitive impact from WBR so I'm hoping the response is transient (edema etc).  I don't know if he's back on steroids but he had a brutal time with them over Christmas following the last treatments so maybe he just is someone who gets really thrashed by treatments. Until this recurrence last week he was on zelboraf.  Thanks again for your input and great to hear Phil is doing so well ! 

        Alison 

        • March 16, 2012 at 2:38 am
        AlisonC
        Participant

        thanks Valerie – I saw your encouraging posts a few days back too.  The newly found mets (last week) are 3 small (<1mm) points plus possible residual activity in the beds of the 3 that were resected/SRS-ed in November.  it was a surveillance scan, not one done due to deterioration – the effects pretty much started the day after the WBR began, which is why we think it's related to th WBR –  since there's no evidence of extensive involvement that would account for this level of confusion otherwise.  He's on temodar as well.  I know from reading this board for the last few years that a lot of people have had cognitive impact from WBR so I'm hoping the response is transient (edema etc).  I don't know if he's back on steroids but he had a brutal time with them over Christmas following the last treatments so maybe he just is someone who gets really thrashed by treatments. Until this recurrence last week he was on zelboraf.  Thanks again for your input and great to hear Phil is doing so well ! 

        Alison 

        • March 16, 2012 at 3:09 pm
        DonW
        Participant

        Hi, Alison. I remember we chatted years ago. I'm glad you are doing well. I thought I would mention that my understanding of WBR related dementia is that it's long term, not something that happens while undergoing the treatment. It seems more likely to me that his memory problems are caused by the tumors themselves or the other drugs and treatments he is on.

        • March 16, 2012 at 3:09 pm
        DonW
        Participant

        Hi, Alison. I remember we chatted years ago. I'm glad you are doing well. I thought I would mention that my understanding of WBR related dementia is that it's long term, not something that happens while undergoing the treatment. It seems more likely to me that his memory problems are caused by the tumors themselves or the other drugs and treatments he is on.

        • March 16, 2012 at 3:09 pm
        DonW
        Participant

        Hi, Alison. I remember we chatted years ago. I'm glad you are doing well. I thought I would mention that my understanding of WBR related dementia is that it's long term, not something that happens while undergoing the treatment. It seems more likely to me that his memory problems are caused by the tumors themselves or the other drugs and treatments he is on.

        • March 19, 2012 at 7:39 am
        AlisonC
        Participant

        Hi Don – thanks for remembering me ! Yes – all going well for me so far, but having a friend progress to stage IV is a sobering reminder of "there but for the grace of god go I…"

        That's disappointing news that it could be longer term.  It's been so sudden and doesn't seem at all related to the tumour burden (which is relatively small in mel terms although of course any burden is too much). I will keep hoping that – like the steroids – he has a bounce-back once they stop this treatment phase….

        Thanks for your post

        AlisonC

        Stage IIIB

        NED since 2001

        • March 19, 2012 at 7:39 am
        AlisonC
        Participant

        Hi Don – thanks for remembering me ! Yes – all going well for me so far, but having a friend progress to stage IV is a sobering reminder of "there but for the grace of god go I…"

        That's disappointing news that it could be longer term.  It's been so sudden and doesn't seem at all related to the tumour burden (which is relatively small in mel terms although of course any burden is too much). I will keep hoping that – like the steroids – he has a bounce-back once they stop this treatment phase….

        Thanks for your post

        AlisonC

        Stage IIIB

        NED since 2001

        • March 19, 2012 at 7:39 am
        AlisonC
        Participant

        Hi Don – thanks for remembering me ! Yes – all going well for me so far, but having a friend progress to stage IV is a sobering reminder of "there but for the grace of god go I…"

        That's disappointing news that it could be longer term.  It's been so sudden and doesn't seem at all related to the tumour burden (which is relatively small in mel terms although of course any burden is too much). I will keep hoping that – like the steroids – he has a bounce-back once they stop this treatment phase….

        Thanks for your post

        AlisonC

        Stage IIIB

        NED since 2001

      • March 16, 2012 at 12:50 am
      Phil S
      Participant
      You are looking for assurances that are hard to give. Every case is so different and individual, how many brain tumors does your friend have, what size are they, is he on steroids, was he acting confused prior to WBR. My husband completed WBR in November and did well. His only obvious symptoms were tiredness, that improved in time and hair loss. My husband was never confused or forgetful due to WBR. Phil also takes temodar as part of his biochemo. I would be asking your friend’s doctors the extent of his brain mets, and what they think is causing his confusion. Best of luck to his family, brain mets are scary, but sometimes there is light at the end of the tunnel. God bless, Valerie (Phil’s wife)
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