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kathye's Recent CancerCompass Activity

  • kathye has created a new message board discussion

    Long time since I have posted, but have filled the board. My Oligo that was dx 8 years ago has shown progression to the point that I will be receiving more treatments. Original treatment was surgery along with 21 months of Temodar. Seizures have never been under control, 2 years they got bad enough, I had to leave work & haven't driven for a long time. The treatment planned for this run is 6 weeks (5 days a week)...

    October 10 at 12:28 AM view discussion
    • kathye has created a new message board discussion

      I am hoping to get some feedback quickly! My insurance co. denied payment for Onfi. Now my neurologist wants me to try a VNS to try to get better control of my seizures. Anyone have one one or know anyone with one and what is your experience?m Any feedback would be very much appreciated! Thank you, Kathy E

      October 15, 2013 view discussion
      • kathye has replied to a post on the message board

        Well, after a week of trying my insurance denied payment for this med. Because I don't have the seizure type from the syndrome it was developed for. Even though, in the literature it says it can be used to treat other seizures as well. So, re-trying Trileptal again for now. Thanks, Kathy E

        September 26, 2013 view post
        • kathye has created a new message board discussion

          Due to uncontrolled seizures for the past 7 years & many failed meds, my NO is wanting me to try Onfi. Has anyone had any experience with it and would you please share? I currently take Keppra, Topomax & Clonopin. And average 20-30 seizures per week. Not a candidate for surgery or VNS because of recurrence of my tumor. Any help will be appreciated. Thanks, Kathy

          September 20, 2013 view discussion
          • kathye has replied to a post on the message board

            I am sorry you are having so much problem with this issue. I am an almost 7 year survivor with an oligo II. As someone else said on this thread, mine was found because of the headache and seizures in my case. After surgery (removed about 85% of the tumor). Had 21 months of chemo. Headaches did get better, but have never went away entirely. Now, almost 7 years later, they have have found progression on the tumor and t...

            August 15, 2013 view post
            • kathye has created a new message board discussion

              Original dx 11/06' 85% resection, followed by 21 months of Temodar. Never got a clear MRI, but they remained stable until Oct. 1st, those dreaded words after almost 6 years, progression. New growth is inoperable, not a candidate for rads. Neuro-oncologist has offered Temodar again (I have both deletions, oligo ll) or Avastin. Could I get some input . They want me to start by next Wed. I have been off the boards f...

              November 15, 2012 view discussion
              • kathye has created a new message board discussion

                1st in nov. 2006 dx with Oligo ll, surgery, 21 rounds Temodar, back to work, the remaining tumor stayed "stable" until this month, when definite progression is showing up. The MRI in May was still showing stable. The only reason one was scheduled this quickly is because I was going in for a 5 day EEG. My seizures have been uncontrollable with AED's, since DX. Surgery is being considered to remove the seizure focus, ...

                October 22, 2012 view discussion
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                About kathye

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                Brain Cancer

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