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    KimberlynJ wrote on LiveWithCancer's wall

    Hi my friend! Diagnosis 10/12. Almost 6 years ago!! Want to check in with you and see how you're doing?? My husband is still in remission!!!! 4.5 years!!!

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      KimberlynJ

      Phil had 6 stitches in his top lip and he was SORE for a week. Thankfully, we have insurance now that can help with balance assessment and physical therapy. It's amazing we were trying to save his life and there was no follow up after his emergency craniotomy 12/13 and his balance and gait were affected by the surgery (and whole brain radiation). So glad to be dealing with these issues!! Supremely satisfied that he CAN go to physical therapy!! We'll see if he commits to walking with me.... :-)

      almost 2 years ago
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      LiveWithCancer

      I sure hope he will walk with you. My husband won't. One time i talked him into it. He walked a block and went back home...

      No follow-up because you didn't have the right insurance? Whatever the reason ... ridiculous!!!!

      almost 2 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      But, like you said, praise God he is still here facing balance issues!!!!!

      almost 2 years ago
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    KimberlynJ wrote on LiveWithCancer's wall

    Hi Live With! Checking in after a long time and I see you had a reoccurance. I'm so proud of you for sticking up with what you believe is the best option for you! Phil had both whole brain and chest radiation in his original treatment plan and he continues to be in remission (miracles happen, thank God for it all!!!!). He still has an MRI of the brain and PET scan of the body every 6 months.

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      KimberlynJ

      We had an experience with UC Davis in 2014 when we were checking to see if there were any clinical trails available to Phil. The UC Davis oncologist specialist suggested he join an upcoming chemo trial of docitaxol. We decided to wait and see. It was the right decision, UC Davis specialist even came back and told us after the fact. Go with your gut, always! Hugs!!!

      almost 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      My doctor was just wanting someone for his trial :( :( I am nearly certain of it. Breaks my heart to even say or think that.

      I have a friend in ICU right now because they put a trial before his life. He might have not made it anyway, but 7 weeks passed with no treatment at all. I am very sad and angry.

      I am a proponent of trials, but NOT when having a subject is more important than saving someone's life!!!!

      almost 3 years ago
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      KimberlynJ

      I've always asked a lot of questions of Phil's oncologist and I know you do, too. It's YOUR life, it needs to be in YOUR hands.

      Interesting that I have heard from others that our oncologist values quality of life and not aggressive treatment. I've always approached him with that in mind.

      He was very quiet about the decisions he was making to treat my brother's testicular cancer, after 4 rounds / 8 months of intense chemo but I knew that when RSPLD surgery was "not suggested" for his case, it was well considered and he made the right choice.

      Even when I first brought him to Stanford he was inoperable and the doctors said, if no chemo was started, Kurt would have 2 months. That loss was heartbreaking. Kurt knew he had a big problem but waited 4 years to address it.

      It's YOUR life, it needs to be in YOUR hands. Hugs!!!!!!

      almost 3 years ago
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    Question: Surgery update