Guest kathleen Posted June 5, 2006 Share Posted June 5, 2006 Hi everyone, my Mom started radiation a week ago Wednesday, she is to have 10 treatments, and now has 3 to go. The lung cancer is growing very slowy but has now spread to her brain. 5 lesions in all, 4 very small one in the front right lobe about an inch in diameter....... Can anyone tell me what their experience has been? The doctors told us there would be some short term memory loss during treatment of course possibly after. They did not tell us that she would become almost comatose at times, unable to speak, or function. We were not at all prepared! They told us it would be less hard on her than chemo! Absolutely not true! Can anyone tell me what steroid they took and at what dose. It seems she was released from the hospital on too low of a dose of dexamethasone....about half of what the radiology department wanted her on. They assumed she was still taking it 4x a day and the hospital released her on 2x per day. Let me tell you she was a mess! And so were we. It was like she had lost her mind completely and no one explained that this could happen. I was expecting it to be her last day each and everyday. Please share your experiences and anything else you can - thank you. kathleen Quote Link to comment Share on other sites More sharing options...
CharlieD Posted June 5, 2006 Share Posted June 5, 2006 Kathleen, Wow, sounds so familiar. I just finished Brain Radiation a week ago and had the same condition as your Mother. I am also on Dexamethisone, 2Mg X 4 initially and cut back now to 2 Mg. They wanted to keep it as low possible, but I took it on myself to raise it to prevent brain swelling. I'm still exttremely fatigued hoping it will let up soon. I don't think I had it as bad as your Mother. but it wasn't fun. How is she doing now? Keep me advised and I'll do the same. God Bless, CharlieD Quote Link to comment Share on other sites More sharing options...
dchurchi Posted June 5, 2006 Share Posted June 5, 2006 Kathleen, My husband had brain mets, but only 1 "large" tumor. Alan had 10 WBR treatments the 15 IMRT treatments to the tumor itself (3.0cm x 3.5cm). That was all completed by Sept. 05 Alan does had sort term memory issues and has lost most the hearing in his right ear, however, the tumor is completely gone and has not been visable on this last 2 MRI's. So yes there are some side effects, but Alan and I are enjoying a good quality of life right now. So for us it was worth it. I hope over some time it will be the same for your mom. Prayers for your family. Quote Link to comment Share on other sites More sharing options...
marym Posted June 5, 2006 Share Posted June 5, 2006 My experience was with radio surgery and decadron, so I can't really help, but I want to wish you the best during the difficult times. Warm regards, Mary Quote Link to comment Share on other sites More sharing options...
hollyanne Posted June 5, 2006 Share Posted June 5, 2006 Hi - I don't have experience with brain radiation, yet my mom took dexamethasone at 12mg daily for swelling along the spinal cord -- she did really, really well with the steroids (4mg x 3) -- we eventually cut her back to about 4mg (very slowly.) Hoping that your mom starts having less symptoms from the radiation... Holly Quote Link to comment Share on other sites More sharing options...
mayos Posted June 8, 2006 Share Posted June 8, 2006 WBR left me with alot of short term memory loss too. I think the docs make too light of this side effect. My right ear had lost most of its hearing also...but my ear specialist removed large plugs from both ears and my hearing is so much better. The doc said WBR sometimes burns scabs inside our ears...then the earwax stays deep inside and accumulates on top of the scab to form something like a plug. This info is kinda gross but if it helps someone it's ok to share it. I also can't use Q Tips anymore. Doc says our ears are self-cleaning....this is hard to do but worth my hearing. Quote Link to comment Share on other sites More sharing options...
missymommissy Posted June 11, 2006 Share Posted June 11, 2006 Hello Again,Kathleen, After my mother finished the 10th radiation treatment she continued to get weaker and weaker. She couldn't get up off the sofa without help, walk to the bathroom alone and barely get in bed. The doctors didn't tell her it could be so bad. She also lost most of her hair. I was just beside myself. She was on 4 mg of steriods once a day. I took her back to the radiation/oncologist on May 30 to have her checked because I was afraid the weakness in her legs was due to her brain being swollen but the doctor did not think so. He felt she should be hospitalized to get more stable. Then I took her to the oncologist and he scheduled her to take her first chemo on June 9! I decided on June 1 to take her back to the hospital because she was declining so much. The doctors told her on June 2 that she was too weak for chemo. She was disappointed but said the doctor didn't know how strong she was and she might do it anyway! She was a fighter and never gave up. On June 5 the doctor said she had only a few days to a week to live. He didn't tell her. I stayed with her like I did every night and she passed away Tuesday morning, June 6, at 1:15 AM. The last day her breathing was very bad. She was buried yesterday, June 9. I am so sad and miss her so much already. I hope your mom is doing better. Rosemary Quote Link to comment Share on other sites More sharing options...
barbaraSanAntone Posted June 11, 2006 Share Posted June 11, 2006 I felt so sad to read about your mom, and God keep and bless you in your grief. I am 73 and have been treated since Jan 2006 (almost daily with first chemo and now radiation). It seemed to me that your mom went so quickly and it makes me wonder how my illness will progress. I hope it goes quickly and still with care and support around me. I hope I havent made you feel sadder, because I know how it feels to lose your best friend. Love and strength to you and your family. Quote Link to comment Share on other sites More sharing options...
mayos Posted June 13, 2006 Share Posted June 13, 2006 My heart is sad for you....but it sounds as though you did everything right for your mom. Bless you and yours. Quote Link to comment Share on other sites More sharing options...
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