Hey everyone! Just got back from my appointment with Dr. Rosenfeld...(new doctor) LOVE HIM!!! He took time to answer all of my questions which filled an entire notebook page. So here are the answers. Most of my issues are with the 4mg of Dexamethazone aka steroids so when I put Dex. that is what is stands for. Here we go. Swollen right ankle, swollen face with broken capillaries, skin breakdown (scratching and getting blood blisters, brusing) indigestion, sleeping problems amd massive weight gain...TOO MUCH DEX!!! He wants to cut it in half from 4mg to 2mg. Oh the most important...Roid Rage...DEX!!! He didn't think that my sinus problems were from radiation so I will just keep taking the nose spray. New MRI right after Turkey Day with follow-up two days later. If cancer is back, a few options, Avastin thru IV with Temadar. Not the pill form of Temadar that made me so sick, this one is thru IV also and he said it is easier to tollerate. My Dilanton level was 14.6, normal is between 10-20. So that is good, he did say we could try to taper off the Dilanton but possible side effects would be another seizure. I'm gonna stay on the Dilanton for now. I do believe that covers my list. Oh, the clinical trials...they don't have any right now for GBM's. I did ask about the news report we saw on tv and he said if the cancer is back, he can send me to MD Anderson or Duke for their trial. I get the meds from them and come home. If only someone else could have taken a few seconds to say that, I don't think I would have been so upset. Now, I think that is all. Might just take a nap, I did fold laundry this morning when everyone else was asleep. More later friends! Thanks for reading and keeping up with me.
Love to all,
Anna