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tbh1835

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      tbh1835
      Participant

        Chris, my story – 

        I was diagnosed with MM in May '14, right sinus also.  One major surgery and two minor follow ups, followed by 33 rounds of proton beam radiation (highly accurate) at Mass General.  Then an interesting course of chemotherapy, cisplatin and temozolmide – 6 rounds.  A Beijing study showed it  being pretty effective.

        I handled it all quite well, and was NED since last spring, living life pretty normally.

        Radiation wasn't bad at all, I think because of proton beam technology.

        But quarterly scans showed an enlarged lymph node (retropertirenum) a couple weeks ago, and before I could get the biopsy done, I developed pretty good headaches, and Christmas night brought me to Mass General ED, I had a brain MRI scan, and immediate surgery to remove the brain met.

        Next week I will start to develop my plan with my docs.   IPI/Nivo is one of the options for sure, as is Keytruda.  Any advice??

         

        By the way, there are Facebook sites for MM.   I can invite/introduce you to a couple….

        tbh1835
        Participant

          Chris, my story – 

          I was diagnosed with MM in May '14, right sinus also.  One major surgery and two minor follow ups, followed by 33 rounds of proton beam radiation (highly accurate) at Mass General.  Then an interesting course of chemotherapy, cisplatin and temozolmide – 6 rounds.  A Beijing study showed it  being pretty effective.

          I handled it all quite well, and was NED since last spring, living life pretty normally.

          Radiation wasn't bad at all, I think because of proton beam technology.

          But quarterly scans showed an enlarged lymph node (retropertirenum) a couple weeks ago, and before I could get the biopsy done, I developed pretty good headaches, and Christmas night brought me to Mass General ED, I had a brain MRI scan, and immediate surgery to remove the brain met.

          Next week I will start to develop my plan with my docs.   IPI/Nivo is one of the options for sure, as is Keytruda.  Any advice??

           

          By the way, there are Facebook sites for MM.   I can invite/introduce you to a couple….

          tbh1835
          Participant

            Chris, my story – 

            I was diagnosed with MM in May '14, right sinus also.  One major surgery and two minor follow ups, followed by 33 rounds of proton beam radiation (highly accurate) at Mass General.  Then an interesting course of chemotherapy, cisplatin and temozolmide – 6 rounds.  A Beijing study showed it  being pretty effective.

            I handled it all quite well, and was NED since last spring, living life pretty normally.

            Radiation wasn't bad at all, I think because of proton beam technology.

            But quarterly scans showed an enlarged lymph node (retropertirenum) a couple weeks ago, and before I could get the biopsy done, I developed pretty good headaches, and Christmas night brought me to Mass General ED, I had a brain MRI scan, and immediate surgery to remove the brain met.

            Next week I will start to develop my plan with my docs.   IPI/Nivo is one of the options for sure, as is Keytruda.  Any advice??

             

            By the way, there are Facebook sites for MM.   I can invite/introduce you to a couple….

        Viewing 2 reply threads
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