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  • Post
    • February 5, 2018 at 10:00 pm
    Annikins
    Participant

    Hi

    So my brother (46) was diagnosed with incurable melanoma in October 2017.  Information has been pretty hard to come by from the consultants, and I'm not sure if he's sharing all the info he gets anyway, partly because he's an adult and might not want to, and partly he has mets in his brain so I'm not sure how much he remembers.

    He is on trametinib and dabrafenib, and has been seeming like he's doing ok, relatively.  He was more or less bed bound for a while, but has gradually got more energy.  He can't walk far but has a wheelchair and is making it up and down the stairs.  He has been able to spend some time with his two young children, which has been good.

    But this week he has become very confused.  Is this a side effect of the medication?  Or maybe a sign that the mets in the brain are growing?  He had some scans last week, but he won't get any results until next week, so I'm just looking to maybe find out what this might mean.  I know no one wants to look negatively, but I just want to be a bit prepared.

    Does anyone have any idea what might be happening?

    Thanks

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  • Replies
      • February 6, 2018 at 2:43 am
      Janner
      Participant

      Sounds like you are not in the US.  How long has he been on treatment?  That particular drug combo can be very effective in the short term but doesn't tend to be a long term solution for most.  Waiting for 2 weeks for scan results is a long time.  While side effects are always possible, I think you definitely have to consider new or growing brain mets when you see a change in state like confusion and you should let his doctor know sooner than later.

      • February 6, 2018 at 4:57 am
      sister of patient
      Participant

      Hello – I'm sorry to learn your brother is having a rough time but you are definitely in a good place to gain some insight into his illness. If you do a search on this forum for discussions concerning brain mets, you'll find some very good information.

      Also, the post right below yours concerns brain mets and you'll see a response there from a poster named Bubbles (Celeste) who has collected and provided vast amounts of information – this is a link to her blog site from her response:

      "Here are a zillion reports on brain mets (this post has links within): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/melanoma-brain-mets-things-are-getting.html

       

      As the previous poster suggested, his confusion needs to be reported to his doctors!! … if not by him, perhaps by a caregiver?

      And otherwise, a few more questions come to mind: where is your brother located? why would his doctors deem him "incurable" (and this is months ago)? does he have a melanoma specialist?

      I wish you well with your information gathering … perhaps you can get your brother to open up a bit … sure hope so, for both your sakes!! Take care.

      Barb

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