One patient with glioblastoma still alive nine years later
by Albertoid on Sat Dec 17, 2005 12:00 AM
The treatments had caused some side effects--some short term memory problems, slight speech issues, loss of some hair, and mild seizure disorder for which she tood medication. But she was well and remained so pretty much for ten years.
We got married in '93. Her seizure disorder got worse in the mid-nineties. In '97 she had a major problem with status epilepsy--uncontrolled seizures and was in the hospital for months and then rehab for six months. She recovered fairly well, but sustained brain injury. Still, she could walk, take care of herself, talk (with difficulty) and so on.
This year, she couldn't stand up one day and they discovered a large tumor, not a GBM, but an anaplastic meningioma, thought to be caused by radiation treatments. She has not been doing well since the surgery.
I guess I want to get across a few points:
1) Doctors speak in statistics. They don't know. My wife always thought positively.
2) Survival of GBM is a relative thing. If you do survive long term, the side effects of radiation treatments unfold over many years, even decades. These include seizures, brain atrophy and premature aging, and other problems, such as dementia.
3) For you survivors who have had full brain radiation--there may be things you can do now to help prevent some effects down the road. Knowing about it in advance may help you to head off some disasters (regular scans can help catch new tumors; close monitoring of seizures can help uncontrolled seizures etc). Talk to the radiation oncologist about it.
4) If you can avoid full brain radiation and go for more precisely directed treatment, consider doing so. This may not be possible, but it's worth looking into.
5) Make your doctors talk about long term effects of the treatments--they tend not to because they think you'll die before side effects set in. So you have to push them to talk about it.
Thanks for reading my long message. Good luck to you all. I am interested in hearing about other long term BGM survivors and how you are doing with radiation side effects.
by Alline on Sun Mar 12, 2006 12:00 AM
by Alzbeta on Wed Mar 15, 2006 12:00 AM
by Siddhartha on Thu Apr 13, 2006 12:00 AM
by Sarah_Anne on Sun Apr 23, 2006 12:00 AM
by Chris58 on Mon Apr 24, 2006 12:00 AM
by b_in_California on Mon May 15, 2006 12:00 AM
by Bills1gal on Thu Jul 06, 2006 12:00 AM
by The_Greatest_Physician_is_God on Wed Jul 12, 2006 12:00 AM
by Roses4jing on Tue Jul 18, 2006 12:00 AM
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