Hi all,
It has been months since i have last writen to you all. I thought i might take this oppourtunity to say i have read over your latest stories, and my heart and thoughts go out to you. This disease is so hard to deal with, and i suppose at this moment i am getting out what i feel inside. We have had a tough journey the past few months.
Ok so my mum, she was diagnosed 11 months ago with GBM4, and she was doing very very very well on temodal, after resection and radiotherapy. She had an MRI in November 07 and that was clear, and because she was doing so well, she didnt get an MRI until Feb 08.
This MRI showed the cancer had regrown, Doc ordered PET scans, and they were "HOT"
Mum is now on Temodal with Procarbazine, and Avastin Infusions. She is tollerating all very very well.
The hardest news was hearing that the cancer had come back, it was like she had been diagnosed all over again, we broke down, and now slowly we are getting stronger again.
the set back was hard, i dont know how we will deal with another if any.
My mum looks fantastic, and i believe that her speach had improved since being on avastin and procarb/temodal. And because we have a plan of attack we are coping.
Some days she is sad and low, and crys due to the uncertainty of this disease, and others she is bouncing off the walls with energy.
What more can i do to help? i feel helpless...
I would love to hear from people who have had set backs and are still going strong, and who is on Avastin, and is it a miracle drug as they say. Does it always work? what are we to expect?
I am in Sydney Australia, any one on this board from here...?
Thank you for listening, i needed to let it out.
I wish i had gtreat news like mum has had no regrowth, and we really believed that would be the case, but you know, you become complacent, and you cant see it, and thats whats hard... you think its gone... but then up it pops...
Ok thanks for listening
Love Gilda