One patient with glioblastoma still alive nine years later
by Densdaughter on Wed Mar 14, 2007 12:00 AM
I am wondering if anyone here has any experience with the long-term effects of Prophylactic Cranial Irradiation. My father had PCI back in 2002 (early), and seems to be experiencing some neuro side-effects that may be worsening. The very fact that he is still alive (I'm including his story below) is a wonderful blessing, but if there is treatment to be had for the PCI side-effects, we mean to find it! He has problems with his gait, some moodiness, some problem-solving deficits, etc. He was sort of railroaded into the treatment to begin with, and his doctor has (for what seem to be some questionable reasons pertaining to clinical trials) sloughed-off his concerns, but they are worsening.Given that radiation to the chest is known for causing pericardial problems (which Dad has experienced) and other coronary issues, it would stand to reason that radiation to the brain would, too...Just wondering if anyone out there has any experience with this. Thanks in advance!DawnFYI/Dad's story:
On October 11, 2001, my father was diagnosed with stage IV small cell lung cancer; I know you are dealing with non-small cell cancer, but I thought you might get some comfort from my story, none-the-less.Dad was told he had between two weeks and two months to live, and that he shouldn't bother having treatment -- that pallative care was all there was for him, given his condition. At diagnosis, one lung was so full of cancer that it didn't even show up on an x-ray; it had metastasized, and a tumor had wrapped itself around his heart, squeezing his heart and causing heart attacks. The diaphragm had completely separated from one of his lungs. He had lost so much weight and looked so sick -- because he was, of course.Anyway, my father decided to fight, after all. He recieved chemo and radiation, and his body responded very well to the treatment. To prevent the cancer's spread to his brain, he had prophylactic cranial irradiation (which is what brought me to this site -- I'm hoping to find some info on the long-term effects of PCI, as he seems to have some neuro side effects that one might attribute to the PCI).Anyway, my father is still alive and cancer free. He now has four grandchildren (well, three -- I'm due in a few weeks and that'll make four) who adore him -- and vice-versa. He's doing very, very well.So my point is this. Everyone is different. Everyone's cancer is different. And -- and I think this is important -- statistics, by definition, do not include you! Statistics are the result of other people's unique experiences and disease. So take heart, because while there are no guarantees, there *could* be a cure for your family member -- or at minimum, long-term survival.Going on six years after being "given" two weeks to two months to live, being told to get his affairs in order, etc., my father is still alive and cancer free.So try to stay hopeful, because that seems to matter to the patient's mindset, which just make make a difference, as well.I wish you all the best.Den'sDaughter
by cruisin on Wed Feb 13, 2008 12:00 AM
I am new to cancer compass. I need to decide if I am going to get PCI
Did you get anyone to respond that helped answer your questions?
How is your Dad now? Would you recomend that I do it?
by westiebabies on Tue Feb 16, 2010 01:54 AM
I had PCI that ended in July of 08. I was told that any symptoms or side effects would be years down the road. Since that time I've lost most of the hearing in my left ear; I cannot taste anything; I cannot smell anything; I lose my balance, a lot; my memory is so bad that for 3 nights in a row I've gotten out of the shower having forgotten to rinse the shampoo out of my hair. My short term memory is shot. I labored long and hard over whether to have PCI in the first place. I am (was) an intelligent woman and didn't want to lose any of that. Do I give it a shot or take my chances. I'm not so sure that giving me a longer life but one where I am nearing becoming a blithering idiot was worth it.
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