lesleynunn
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lesleynunn

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      • June 21, 2017 at 5:30 pm
      lesleynunn
      Participant

        Wow our stories are similar.  He has had several basal or squamous cell removed in the past, he cant remember which.

        Wonder if its just doctor preference when deciding who to start on ipi/nivo vs nivo only, wonder if I should ask them about adding ipi?

        • June 21, 2017 at 5:27 pm
        lesleynunn
        Participant

          Wow.  I was with him during the gamma and I cant imagine going through that 10 times.  You are a warrior to say the least.

           

          He has had a PET, it did say drop mets/ lepto, so as I am understanding that is worse than spinal mets (insert tears).  The doctors seem so positive and encouraging, I have asked about a "time line" so to speak but they say they have success with IMRT, he had 12 rounds on his spine.  Is radiation used to treat lepto or spinal mets, I am sort of confused byt this.  On his follow up MRI, as I mentioned, he does have one new mets, seems to be causing some balance issues, they are scheduling him for another gamma.  When you say the treatment will not be the same as oridinary mets… ?  Should they be doing another gamma?  Will they not do as many?  He does not have mets to abd, they do think the lepto is causing bowel/bladder dysfunction.

           

          Thank you so much for responding, this forum is so helpful and I am grateful for people like you who take time to educate newbies like me.

          • June 21, 2017 at 5:19 pm
          lesleynunn
          Participant

            Thank makes sense, but I did not realize they were different.  PET scan read "drop metastasis/leptomeningeal metastasis".  I have read about what they are doing at MD Anderson, seems so unatainable for him living in VA.  Our oncologist has not mentioned intrathecal chemo, I suppose it's something they don't do?  I need to bring that up at our next appt.  

             

            Thank you for your response, I am naturally terrified and never feel like we are doing enough, I want to learn all I can and quickly.

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