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shifting gears – need urgent info on any fin. aid programs for Temodar

Forums General Melanoma Community shifting gears – need urgent info on any fin. aid programs for Temodar

  • Post
    amybusby
    Participant

    Now that my spinal fluid has been cleared up, my leptominingial mets are getting a bit worse (lining of my brain).  So Dr. Papa thinks I should do a 10 day course of WBR along with Temodar.  I was expecting that would probably be the results / recommendations.  Problem is how much of the T. cost is my insurance going to cover?  Hopefully I'll know tomorrow, but since I needed to start it tonight, we're already behind schedule.  Has anyone had any success with assistance?

    Now that my spinal fluid has been cleared up, my leptominingial mets are getting a bit worse (lining of my brain).  So Dr. Papa thinks I should do a 10 day course of WBR along with Temodar.  I was expecting that would probably be the results / recommendations.  Problem is how much of the T. cost is my insurance going to cover?  Hopefully I'll know tomorrow, but since I needed to start it tonight, we're already behind schedule.  Has anyone had any success with assistance?

    I've heard it's not too bad but I'd like any advice / input on the WBR / T. treatment too!

    Thanks,

    Amy

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      Kevin from Atlanta
      Participant

      Buying off of the internet each dose(pill) of Temodar cost about $150.  I took Temodar for two years with numerous other chemo's but eveyone says fatgue is the biggest side effect. I had wide brain raditation 30 days ago. The radiation itself is no big deal. I am currently experiencing confusion and memory loss. I was hoping that it would start going away by now. The Onc has me on Ritalin to help me focus and help keep me awake during the day. I no longer take Temodar since I am in compassionate use trial with Ipi.

      Update, tonight I actually dusted off my treadmill and used it for the first time in years. A 1/4 of a mile, but it is a start.

      Yesterday, I actually vaccumed the downstairs for the first time in a year. I am picking up a little energy as I get further away from the chemo treatments.

       

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