What a let down – no BRAF test results
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What a let down – no BRAF test results

› Forums › General Melanoma Community › What a let down – no BRAF test results

  • Post
    • September 21, 2011 at 8:01 pm
    dearfoam
    Participant

    Went in to find out if dad's tumors tested positive so he could try Zelboraf, and after 3 weeks of waiting, they told us the tissue sample was insufficient. Doc thought there might be a chance we could get some Zelboraf and see if it does in fact have an effect, thereby confirming without another biopsy. I doubt Roche will do that for us since it would have to be through their patient assistance program.

    So in the meantime dad will continue Temodar, which is only slightly effective – 2/ 20 or so tumors shranks some (brain), while 2 of 2o grew (on spleen and colon).

    Went in to find out if dad's tumors tested positive so he could try Zelboraf, and after 3 weeks of waiting, they told us the tissue sample was insufficient. Doc thought there might be a chance we could get some Zelboraf and see if it does in fact have an effect, thereby confirming without another biopsy. I doubt Roche will do that for us since it would have to be through their patient assistance program.

    So in the meantime dad will continue Temodar, which is only slightly effective – 2/ 20 or so tumors shranks some (brain), while 2 of 2o grew (on spleen and colon).

    Dr thinks we will probably have to biopsy a brain tumor. All I think about is how the original biopsy in April landed him in the hospital for over a week witha collapsed lung. Ugh. Don't even want to know what can happen to the brain.

    Wait, wait, wait – it's all I seem to do.

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  • Replies
      • September 22, 2011 at 2:32 am
      MichaelFL
      Participant

      No, no, no. Confirm first. If he is not BRAF positive and takes the drug, it may have the opposite effect and cause the tumors to grow faster.

      • September 22, 2011 at 2:32 am
      MichaelFL
      Participant

      No, no, no. Confirm first. If he is not BRAF positive and takes the drug, it may have the opposite effect and cause the tumors to grow faster.

        • September 22, 2011 at 5:41 pm
        dearfoam
        Participant

        I am pretty sure it is not going to happen anyhow!

        In other news, today I found out our cat also has lymphoma cancer!

        Ugh

        • September 22, 2011 at 5:41 pm
        dearfoam
        Participant

        I am pretty sure it is not going to happen anyhow!

        In other news, today I found out our cat also has lymphoma cancer!

        Ugh

        • September 24, 2011 at 1:10 pm
        MichaelFL
        Participant

        I do not think I have heard yet of a doc giving a BRAF drug without confirmation one is positive for the mutation.

        • September 24, 2011 at 1:10 pm
        MichaelFL
        Participant

        I do not think I have heard yet of a doc giving a BRAF drug without confirmation one is positive for the mutation.

      • September 23, 2011 at 12:20 am
      Charlie S
      Participant

      Yes, waiting sucks.  Does your Dad have tumors other than the brain that could be reasonably  plucked and BRAF tested?

      Charlie S

      • September 23, 2011 at 12:20 am
      Charlie S
      Participant

      Yes, waiting sucks.  Does your Dad have tumors other than the brain that could be reasonably  plucked and BRAF tested?

      Charlie S

        • September 23, 2011 at 7:34 pm
        dearfoam
        Participant

        The Dr indicated the spleen tumor was not a good choice and that the brain biopsy was the easiest to "bounce back" from. Seems like that would still be risky, and he said he would be investigating the option between now and our next visit. There are other abdominal tumors, but we do not want to do the lungs again due to previous lung collapse and PE (clot) problems.

        I am unsure if we will be contacte dbefore the end of this cycle about setting up a biopsy – I think we will discuss at the next visit and perhaps decide if it is even worth it.

        • September 23, 2011 at 7:34 pm
        dearfoam
        Participant

        The Dr indicated the spleen tumor was not a good choice and that the brain biopsy was the easiest to "bounce back" from. Seems like that would still be risky, and he said he would be investigating the option between now and our next visit. There are other abdominal tumors, but we do not want to do the lungs again due to previous lung collapse and PE (clot) problems.

        I am unsure if we will be contacte dbefore the end of this cycle about setting up a biopsy – I think we will discuss at the next visit and perhaps decide if it is even worth it.

        • September 26, 2011 at 8:53 pm
        dearfoam
        Participant

        Going in for a consultation with neurosurgeon this Wednesday regarding crainiotomy for a brain tumor biopsy, presumably to take place later this month.

        • September 26, 2011 at 8:53 pm
        dearfoam
        Participant

        Going in for a consultation with neurosurgeon this Wednesday regarding crainiotomy for a brain tumor biopsy, presumably to take place later this month.

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