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My mother diagnosed with Grade IV mid July. Immediately she was put on Dexamethasone (8mg a day) and Kepra (anti-seizure drug). The Neurosurgeon didn't do a removal surgery but only a biopsy. She started radio and chemo (Temodar) mid August and finished end of September.
The only thing that worked from day 1 was Dexamethasone but with the prize of loosing mobility on her legs (which I believe is a side effect).
After all the gruelling and painful trips to the hospital to do the radio we were waiting today the results of the last MRI with the hope that we've stopped it, that it shrank. Nothing. It actually grown a little. The first attempt to reduce the Cortisone had as a result to resurface the symtoms.
So, back on cortisone (taking almost 8mg a day for the last 3 months). Radio and chemo didn't work. What is next?
How can I approach this?
You are in a very difficult situation. The answer as to what to do next depends on where you are located and where she is being treated. Have you been to a major brain tumor center? You may want to look at some Virtual Trials or contact some Brain Tumor Center to see if she qualifies for a research study. Has anyone talked about trying a cancer vaccine or Avastin?
Thank you for your reply
I am located in UK while my mother is in Greece. I've lost faith to the doctors there as the majority are indifferent to the patients and behave unemotionally and cold. But when we went to a private clinic somehow everyone was smiling at us (strange enough). I've never had to deal with something so serious before and it was a complete shock to see the Health System in full scale. Doctors behaving appallingly, tired nurses and angry bureaucrats. Consultants are somewhow on a pedestal and only after offerings you manage to talk to them for 10 mins.
Sorry for my rant but I had enough. I have accepted that this is the situation and I have to work with what I have. I want to believe that even tired and indifferent doctors will at least offer some help and advice. At least my mother is getting all the support she needs from family and friends.
I've heard about Avastin (since I have to read more than the actual doctors) but I have to see if they offer it and if there is a chance to benefit..
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