My 67 year old mom has a GBM IV. Diagnosed and surgery completed on 11/9/07. She completed 6 weeks of radiation and started temador on 11/25/07. For 163 lbs she was given the proper mg but she was kept on it CONSECUTIVELY for 3 1/2 months until she nearly died. Her new doctors call her a walking miracle. After having her white blood count drop to a 200 and her ANC to a 24 (0 = extremely high risk of infection, 1500 = low enough risk to go home) we were so close to losing her. She is a fighter and after 3 times in the hospital (the last one being 3 weeks) she, is home. Sleeping a lot, but making progress.
My biggest lessons so far:
1. The first mistake was her seeing an oncologist not a neuro-oncologist. Please, please, please do NOT make this mistake.
2. Get a 2nd opinion. Ask questions. Don't be dazzled by a fancy hospital in a major metro area like we were. Her oncologist almost killed her.
3. Keep a consistent care giver. The rotation of her children (1 week at a time) didn't allow us to see every little sign of her slipping.
4. Your loved one may be weak and fragile but, the human touch is so powerful. Don't forget to stroke your loved ones hair/head, massage their hands, arms or feet. Make sure to tell them how much you love them (a hug says it all!) They need our encouragement even when the statistics aren't so favorable.
All my best to you and yours, delana