• JulieA's Avatar

    JulieA posted an update

    I also have osteoporis as well as olidendraglioma. since I seem to have all "o" diagnosis', only seems fair to have old age also

  • JulieA's Avatar

    JulieA wrote on mivfrederick's wall

    Have you thought about the Cancer Treatment Centers of America?you can google it and see where all of them are located.

  • JulieA's Avatar

    JulieA wrote on mivfrederick's wall

    Good luck finding someone else. I was thinking about Mayo Clinic myself. I go to Barnes Jewish in St.LOUis and love the Doctors. I am afraid IF I go elsewhere, it will probably be the same, just cost more.

  • JulieA's Avatar

    JulieA wrote on sherryhalpert's wall

    My tumor is the same! Just had 2nd tumor and 2nd surgery. starting Temador pills again, the doctors call it "maintence" chemo, which I don't understand unless it is because my first was 3 years ago. The whole thing is unpleasant. My hair is gone from the top of my head in a circle, so I wear a hat alot. I have many and like them, I have also been told that I have a nice shaped head, so I like going without anything on my head.

    1 Comment
    • sherryhalpert's Avatar

      Thank you for sharing Julie. I will pray that you have an easy time this time.

      about 3 years ago
  • JulieA's Avatar

    JulieA asked a questionBrain and Spinal Cord Tumors in Adults

    side effects of Temador?

    7 answers
    • MizJill's Avatar

      aahhh! this forum censored the true and actual name of the cereal, which we can highly recommend.... it really *is* called 'Holy C R A P" .... google it! :D

      about 3 years ago
    • Fusionera's Avatar

      Hi Julie,

      I've had more experience with Temodar (not Temodor) than I care to admit, as I was one of the original test subjects in clinical trial in the mid-90s. I have also taken it several times since as I have had multiple recurrences of my Grade III Oligoastrocytoma. I did not experience vomiting on Temodar, but I also had great anti-nausea meds. I found Zofran to be perfectly effective, but if it does not work for you, you may want to talk to your doctor about a combination of Kytril and Emend, which I took with another trial regimen.

      Constipation, however, is something that plagued me all throughout chemo. I had to ensure I added extra fiber to my diet, and I found that having a dose of Miralax in my juice definitely helped loosen things up a bit so I was more comfortable. Extra fiber and staying hydrated are huge helpers.

      Muscle weakness and incontinence are not side effects I experienced. Have you asked your doctor if those might be related to the location of your tumor?

      18+ year survivor and current patient (4th recurrence)

      about 3 years ago
    • sbmontgomery's Avatar

      I have been off Temador and Radiation now for a little over a year. It did work. The tumor went from the size of a walnut to the size of a pea. I really did not have too many side effects while on the drug. Mostly muscle weakness and fatigue. After treatment is when I seemed to have all the sides effects at once. They came on so fast I ended up in the hospital because of severe dehydration. These are the things that I did that helped a great deal, My doctor put me on an anti-nausea med. I put myself on a schedule of sleeping and eating. I went to bed at the same time every night, woke up at the same time and took at least 2 naps a day. Don't fight the tiredness, sleep when you need. I ate at the same time everyday. Crazy as it sounds I ate 6 very small meals a day. Food was easier to digest in smaller amounts than eating three times a day. I would eat half a sandwich and not a whole one. Doing this seemed to work for me a lot. Hope this helps. Keep the faith and listen to your body, it will tell you what you need.

      about 3 years ago
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