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kim1224
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kim1224

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      • March 15, 2017 at 1:16 am
      kim1224
      Participant

        Hi Cindy,

        This might be a dumb question but how did you get Dr. Weber's email?  My dad is in the same boat as your mom and I would love to contact him.  On NYU website it is only a phone number for appointments.

        • March 15, 2017 at 1:01 am
        kim1224
        Participant

          Hi Judy,

          I am wondering the same thing about my dad.  He also had wbrt and ipi/nivo.  He quickly went downhill after his second treatment and we have never been given straight answers about what could be the cause.  The strange thing is his brain tumors were all either stable or decreased in size since November except on his last scan a few days ago.  A few have grown by 5mm and one has decreased.  The doctors seem too quick to just say it's progression and hospice has been brought up.  We just aren't ready to believe that yet!  I am wondering if there is something else we can do too.  My thoughts are with you and your family.

          • March 15, 2017 at 12:34 am
          kim1224
          Participant

            Annie,

            I am so sorry to hear about your dad.  My prayers are with you and your family.  I wanted to let you know that I was following your dad's story for a while because it was very similar to my dad's.  I haven't been on in several weeks because of what has been going on with my dad.  I just looked back at your last couple of posts and whatever happened with your dad is exactly what is going on with mine.  The doctors are also saying they have never seen a case like his before and have no answers for us.  I know the pain and heartbreak and wish you peace during this difficult time.

            Kim

            • March 17, 2017 at 2:59 pm
            kim1224
            Participant

              He's at Sloan Kettering in NYC.  

              • March 17, 2017 at 2:58 pm
              kim1224
              Participant

                Thanks for replying Annie, when you have so much going on right now.  I appreciate your help and advice.  We were able to get in contact with another doctor at a different hospital, so we're hoping a new set of eyes might solve this mystery.  You're so right about being tortured and nothing making sense.  It is only adding to this nightmare.  

                • March 17, 2017 at 2:56 pm
                kim1224
                Participant

                  Thank you Kerri and best wishes for Jake!  That's what makes this all the more confusing in trying to pinpoint exactly what is the culprit.  

                  • March 15, 2017 at 9:02 pm
                  kim1224
                  Participant

                    He is being treated by a melanoma specialist at what is supposed to be a very reputable cancer hospital. So is that enough to just take their word for it or accept their lack of answers for us? I can't help but wonder if a new set eyes could see something they're not but I don't want to be naive either.  I don't know if it's too far gone at this point. 

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