On 5/15/2008
mominbama wrote:
Hello....I have posted messages here before and gotten several helpful and caring responses so I thought maybe I would be able to get some advice. My son was diognosed last June with Glioblastoma, the original tumor was in the parietal area. After radiation and Temodar, he had recurrence in the same area, then went on Avastin & Ironitecan. While on the avastin & Ironitecan, he developed Hydrocepahalus. While recovering from surgery a new tumor in the temporal lobe and we just found out the cancer cells have spread to his spinal fluid and the lining of his brain. The Dr. said MRI a month ago showed only 1/2 the meninges enhanced, now the entire lining enhances. He had a spinal tap and it was positive for cancer cells. Obviously I am very worried. I know it is bad but I try to keep hope. He has had such a hard year, it almost seems like its one thing after another. In the past month alone we have been in Birmingham (UAB) 20 days, we live 3 hours away. ANYWAY... I was wondering if anyone has had a loved one that has had this happen. We have been given a grim prognosis but he will go thru a clinincal trial starting next week. It is Cytoxin, synthetic Scorpion Venom. Any advice will be so appreciated....Thanks so much!
I am so very sorry that the GBM has been so invasive. I too was diagnosed with GBM last June, fortunately it has been kept at bay and the out look is promising.
I do not know if you have the strength to do this, but how many times have your son's doctors treated this?. What have been the results,? you have to get more options. Send his records to Duke, North Carolina.to Texas California , New York even the moon. Get options on the table.
Please just don't accept the first "treatment". I was treated at Duke by a team of amazing Doctors. Dr. Alan Friedman performed my surgery, If your contact Dr. Friedman, he will call you back immediately. Talks very fast be prepared for HOPE.
My prayers are with you, your family and your son's doctors...