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Cancer: Lung Message Board
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Old 03-19-2001, 12:40 AM   #1
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Exclamation Warning: Prophylactic Brain Radiation

To all who are considering preventative brain radiation, please beware! My Mom had small cell lung cancer, did chemo and radiation and believe it or not, at the age of 74, her cancer disappeared! The doctors were doing "research" and convinced us that should the cancer come back, it would most likely go to the brain. They then talked us into "prophylactic brain radiation". Mom went twice a day for a few weeks. She was fine for about 3 months, then had problems with balance, dizziness, later progressed into difficulty walking. The brain damage was obvious when she had to be put on Ritalin, just to be able to respond to conversation! So the treatments worked, she was "cured" of the cancer. But the preventative radiation eventually killed her. Please ask the difference between "treatments" and "research".... It could save your life.

 
Old 03-19-2001, 06:23 AM   #2
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i am sorry about your mother. i total agree with your position. there are studies form mayo which document terrible side effects from pci in people over 65, along with that if she had had a reoccuence in her brain it would have been that much harder to treat, as you know the brain can only take so much radiation. if it was my family member i would only consider it if the person was under 65 and they had acheived total remission(not partial), because in the end figures show it makes little difference in the actual 5 year survival rate.

 
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Old 03-22-2001, 05:46 PM   #3
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Rosilita, thanks for your reply. Mom was part of a "research" study while doing the brain radiation. She did achieve total remission, but sadly the radiation negated that! I hope everyone gets the word!

 
Old 03-23-2001, 05:06 AM   #4
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i think doctors rely to much on '"research" as they are so desperate to help people with this disease.so hung up on it they don't see more simpler answers. they know when it reoccurs it is often in the brain. they know that they can put over 80% of patients into remission in their first round of the fight with sclc. instead of pci which makes little difference i really don't understand why during their patients checkups whenever they have them on the table such as in a catscan why the brain is just aumotatically checked for mets. beleive me doctors don't do it. they usually will recheck only the area where the original tumors are. it dosen't take much to just go up further and recheck the brain while you are already on the table. i think that should be done especially during the first two years after going into remission. once again, sorry for what happened to your mother, but the subject you brought up is important issue in sclc treatment, and many doctors i think, reccomend pci purely out of frustration.

 
Old 03-24-2001, 10:33 PM   #5
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Rosalita, you are sooo right! Fortunately, Mom was at a National Cancer Center Institute facility and they did regular ct scans and mri's. There was a point when they said, come back in 6 months for another ct, we demanded it sooner and they agreed. Sometimes, you have to take the upper hand and not just blindly follow what they tell you!! We all need to be better informed about the disease, all treatments, all clinical trials, etc. Then we need to be able to "speak up"!!!! Voice our fears, our opinions, our questions... And not be afraid to "shop" for another doctor....

 
Old 04-11-2001, 06:07 PM   #6
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Just want you to all know, Mom was diagnosed over 2 yrs ago with brain tumor from breast cancer that never spread in 10 yrs. Immedietely, they sent her for 20 brain radiations and 4 stereotactic boosts. Her health declined rapidly. They had given her 4 months to live at diagnosis. All this radiation was done on a CT, no MRI was done. It was at a major Boston cancer treatment center. Well, 6 months later, after another CT, they told us the same thing, nothing had changed, go home to die,. She went for a second opinion. She had her first MRI of the brain. She never had brain cancer!!!! All the radiation they gave her was for nothing, it was on top of a stroke, now she is blind and more debilitated than she should of been.
My point is RADIATION of the brain KILLS healthy brain cells. Mom is totally disabled and has come to my home to die. I have care coming in starting this week, she only moved in 2 weeks ago. They say she has necrosis of the brain, all white matter from over brain radiation. Yeah, we have a case, it is coming to a head soon, but what good is that going to do for my MOm now? She has suffered so. This shouldn't of happened. Everyone, please beware, be your own advocate, we wern't stupid people, mom worked as an EKG supervisor for 30 yrs, why did we trust them. Always get a second opinion, and never do preventative brain radiation. Mom has every symptom you've described. Best to you and your family, but I'm going through hell right now Bye Wendy

 
Old 04-12-2001, 03:54 PM   #7
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Wendy,
So sorry to hear this, yes the same thing happened to my Mom. Please, please, please ask about putting your Mom on Ritalin. They put my Mom on it, and the difference was totally amazing!! If nothing else, you will be able to communicate with her and she with you. Mom took it at 8am and noon. By 9:30 am she could carry on a conversation, read the paper and feed herself. It really does help!! After her noon dose, we would do memorization techniques, name the days of the week, the months of the year, count forward and backward. Then play solitare. It helped her feel more normal. Be aware that when tired, her condition will be worse, so make sure she gets frequent naps. If you need any more hints or help, feel free to contact me. God bless you both.

 
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