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Made It
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Made It

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  • Post
    • November 28, 2019 at 7:45 pm
    JudiAU
    Participant
      Yesreesay I finished my fourth combo dose. I made it. I don’t have any ongoing side effects (knock on wood). After the second dose I was hospitalized with a very bad headache and very high fever (104, regularly reading 107 is was crazy). I was there for about 5 days. We finally figured out the cycle and 1,000 mg of Tylenol round the clock allowed me to be released. Three days later I stopped and was fine. I had a lot of tests of course and most tumors were stable but my brain met was enlarged. I had a third craniotomy which resulted in even more nerve damage to my face and some hearing loss, maybe temporary. And within two weeks had another combo immunotherapy infusion. Two weeks later radiation. One week later the last dose.

      I had vision loss my first crainiotomy and then developed glaucoma from steroid overdose. The vision loss resolved and 2 years later the glaucoma has too. Yeah.

      Next month I’ll have a PET scan and switch to a single dose. Hopefully I’ll see some progress on the scans. Hopefully I can get the hearing issue worked out.

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    • Replies
        • December 1, 2019 at 10:07 pm
        DoubleTT
        Participant
          wow …just wow…fellow patients like what you have been through keep me believing that there is a plan to help us…hoping you get the hearing back on track and your eyesight stays stable and well that you an keep your positive attitude…thanks as I’m up and down like a toilet seat with believing and at times paralyzed with fear..your story and others on here remind me to keep going
          • December 3, 2019 at 2:02 am
          jbronicki
          Participant
            Ditto to what DoubleTT said, WOW. I remember saying once that you were one tough cooking, but that is an understatement Judi. You are amazing and wish you didn’t have to go through this at all. Many hugs, will be praying/thinking for scans that show forward progress in your treatment.

            You are just “WOW”
            Jackie

            • December 3, 2019 at 1:46 pm
            Bubbles
            Participant
              You did it!!!! Way to rock it out, Judi!!!! So glad that part is done and hope things start looking up for you in 2020!!! I think it is your turn!!!! celeste
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