moocow35

Please research brain radiation necrosis (I think that is how it is spelled) My mother had symptoms only from the spread of the cancer to her brain which led to the initial diagnosis. She was immediately given WBR. The treatment in itself was extremely rough on her, but supposedly it did get rid of the cancer. About a year after, she started a rapid decline, soon unable to walk, slurring of words, stopped eating, could no longer speak, sleeping all the time until she recently passed. She did have a complete scan at the onset of all these new symptoms, and they could find no more brain (they thought it was back) cancer. Bottom line, from what I understand, the WBR killed the cancer which gave my Mom an extra year. BUT......it also starts to kill off the good cells (necrosis) and that is basically what killed her. There is good and bad with this treatment. Without it would she have lasted 1 1/2 years from diagnosis?, most likely not. However this was a very sad way for her to die, especially since there was "remarkable" shrinkage of the lung tumor. Robin

Gayle, I am very sorry for your loss. I feel your pain. I lost my Mom also on July 11th at 4:15 in the morning. I too didn't say all I wanted to say to her. Who would have thought she would go so quickly. You don't want to discuss some things, some things might seem too final. You don't want them to think that you are giving up hope. I wish I had not waited. Now it is too late. It's only been a week, they say it will get better. But who do you call now? Mom is gone Robin

Thank you everyone for your well wishes. My Mom was a very brave woman. Even though this started in her lung, the first symptom 15 months ago was a slight drag to one foot. She could not make it move in all directions. It's a shame, but would you believe that when she went to her internist he said "it must be your age, why don't you try to go to curves!" She was smarter than that, and had an MRI on her own. Needless to say, she never saw that doctor again. The brain radiation was torture for her and made her so very sick, but it did get rid of the cancer there. So with the chemo, we had almost one good year with her. It was not until about Mother's day that she needed full time care. I will miss her so much, as will the entire family. Last night, even with not having any fluids, there was a tear in the corner of her eye. Poor thing. She is at peace now, and with her parents and her husband. I did try to go on to the grieving forum, but got an error message. I will try again another time. Robin

With much sadness, Mom passed away at 4:15 this morning. She fought a very long hard battle with this horrible cancer. As it stripped her of all her dignity, she still held her head high and never gave up hope. I pray for all of you and your loved ones. Robin

Hi Karen! Thank you so much for your response. I will pray for you, and your journey through this. You have not upset me at all. I just wish I had more insight in the beginning. However, you just have to trust the doctors. Mom has not had any decadron in about a week now. She just can't take any pills. The last time we tried to give her a tylenol a couple of days ago, she choked on it, and could not get it down. I bought the adult liquid, and she threw that up. The hospice nurses have sent some topical cream for her hip, I hope that works. Apparently it is pretty strong stuff. Mom is too weak to even sip through a straw anymore. She is taking a very small amount of water with a spoon. Lynn, thank you for answering about the food and water. I think that Mom is afraid, however she can not speak at all anymore. She tries but it is such a soft whisper, and I can't understand it. We have a 24/7 aid that is living with Mom. There is no way I could do this alone. At least Mom gets to stay home through all of this. Sorry to hear about your Mom. All said and done, in my heart I think that it is not the cancer that is causing this, it is the brain radiation. Thanks, Robin

Hi Maryann, Thank you so much for the prayers. We certainly need them at this point. Mom is so weak, but is taking a couple spoonfuls of sorbet, and some sips of water by spoon. It is heart breaking to see her this way. Thank god she is not in any pain. Her hip has been bothering her, but this I believe is from arthritis which has been bothering her on and off for a while. The hospice nurse came again today and still her vitals are all good. She still sleeps all day, and can barely talk. I just don't want her to suffer endlessly. Her mind still seems to be in tact, and she must be humiliated when we have to change her diapers. Maryann, did you used to post on Quit net? I seem to remember you from a few years back. I quit smoking October 2000, going on 4 years now. I just hope and pray that I quit in time. I'll ask again, does anyone know how long someone can go without eating or drinking? Robin

Hi Don, Sorry to hear that your mother is going through all of this. It is a very rough time. It doesn't sound like your mom is experiencing too bad of effects from the radiation. My mom is down to the lowest possible dose of the decadron. I'm sorry, but I don't know the milligram, but over the course of 1 year she has be tapered down to one pill a day. The last 2 days she has had none. She is sleeping too much, and is not eating or drinking. The doctor is not concerned about the lack of meds unless Mom starts to show any signs of discomfort. Then they will start to give it to her via shot form. You do need to keep up with the steriods while receiving the brain radiation. This alone can cause a lot of swelling to the brain. At one point during her WBR, they started to taper off the steriod, and Mom got very very sick. She was vomiting and having very bad headaches. After they increased the dose again, she was fine. Good luck to you and your Mom, Robin

Pamela, We must have been typing at the same time. At first we thought Mom had steriod myothopy (not sure if that is the spelling) We questioned the doctor on that, and she said that Mom is on such a low dose of decadron that it should not be causing that. The steriods can cause weakness and muscle wasting. This however is reversable with physical therapy and stopping the steriods. Mom was tapered down to such a low level, the weakness should not have progressed so much. The only thing that I could find by researching radiation necrosis is the use of hyperbaric chamber (again excuse the spelling) This is the only thing that can give someone with brain necrosis any hope. However given my Mom's age (79) and the fact that she does have stage 4 cancer, the long term results would not be a factor. Steriods are some very serious drugs, and even though the medical personnel deny long term lasting effects, I believe different. But with tapering and stopping, my Mom should not have lost the use of her legs. She as well as your Dad is confused and is saying some pretty crazy things. At least she was, now she is barely talking the very little she is awake. I'm very sorry to hear that you are going through this also. The WBR was very rough on my mom. She got extremely sick from it, and was hospitalized twice from dehydration. She pulled through all of that, and was near fine for a year until now............ You say your Dad is home. Do you have nursing care, or is your family doing it all? We have a wonderful, kind, patient nurse who have moved in. We are glad to have her, and especially for Mom's dignity when the adult diapers have to be changed. I don't think she really wants her adult daughter to be doing that. Take care, and let me know what you find out. Robin

Thanks Sharon, Karen, and Lyn, I was able to spend most of the day with Mom today. She slept peacefully most all of the day. She did wake briefly, and I was able to show her my daughters prom and graduation pictures. She barely was able to speak, but said "Aimee is such a good kid and she was proud of her" I'm sad that Mom was unable to go to the graduation or see her before the prom. She went immediately back to sleep. She has not had anything to eat or drink for 24 hours now. The hospice nurse stopped by (I was not impressed) but said the vitals were still good and she has not started the dying process yet. The one yesterday said the time was close, as well as a good nurse friend who stopped by. I suppose no one knows except Mom, she will go when she is ready. The one thing that this hospice nurse said was oh, she can go weeks without eating or drinking. Now I know that without eating one can survive for quite some time. But what about fluids? Does anyone here know? Sharon, what I have read about brain radiation, is not only does it kill the cancer but it also starts to kill the good cells, hence the necrosis. The radiation did get rid of the tumors in Mom's brain, so she had a year more than predicted with us, but it is a crying shame that the cancer was being held at bay with the Iressa, and then the brain starts to die. Her original symptoms that there was cancer in the brain was definately motor with movement in her foot, so I suppose it would make sence that the inability to walk would be one of the first motor skills to go. Karen, when Mom first lost the ability to walk, the doctor admitted that she was not concerned about the long time effects of brain radiation. That most stage 4 cancer patients don't live long enough to have the side effects show up. I agree with you, I'm sure somewhere in the fine print there was a small blurb about what might happen, but when you are faced with cancer, you basically do what the doctor recommends. It did help in the short term, but has proved tragic in the long run. Lyn, I'm sorry to hear about your Mom. I'm glad she was in no pain. I thank the lord that my Mom is not feeling any discomfort. I'm sure she is suffering and scared mentally, but there is no physical pain. I am glad for that. Thanks again for listening to me, and your good wishes. Robin

Thanks Elaine, Elaine and Jana, Mom slept most of the entire day today. The little that she was awake, she could barely speak or put a sentence together. I don't know if that is a good sign or not. The hospice nurse came today and thought that the time is close. I agree with all of you that not everything is adding up. Her doctor is an onc, and supposed to be a good one at that. Since I am at work all the time, my sister is the one who does the communicating to me, and perhaps somehow I am not hearing or getting the whole story. To change doctors now, or even to get Mom to the hospital to run tests would require an ambulance transport. She is just too weak to get down the stairs or sit up in a wheelchair. From what I have read about brain radiation necrosis, all of her symptoms seem to fit. Tomorrow I have time off and get to go visit, so I will have more insight as to her condition. Thank you all so much for your support, especially with all you are going through as well. Love Robin

Hi Elaine, She can not walk at all. This started slowly about April, she could barely make it with a walker. Between April and May she took some terrible falls, and finally she just can not stand up on her own. She also now is too weak to sit up in a chair (if we can even get her into one) When we first got the hospital bed delivered, she could be helped to her bathroom, maybe 5 feet away, then the commode had to be brought in the picture and was placed by her bed, and now she just uses a bed pan. She can not even reposition herself in bed! The doctor did make a housecall, and thought that the cancer was now in the spine which is why she can't walk. I argued that point, #1, how can she make such a diagnosis without medical testing? The last scans she had was only a couple of months prior. Also, my Mom is in NO pain at all. Would someone with cancer in the spine so bad that your legs are useless not have any pain at all? At first the doctor said that if she remains alert for 3 weeks, she would admit her in the hospital and run some tests. Well 3 weeks went by, and the doctor again made a house call, and now is leaning more towards the brain radiation necrosis (but did not come right out and say it) She said that she could admit her, but for something that "appears" to be neurological it is very difficult to make a diagnosis, and she is stage 4 cancer anyway. Don't get me wrong, I want to help my Mom all that I can, it would seem like the doctor is giving up. The reason we need 24/7 nursing is Mom can barely even get the spoon to her mouth, she can't walk, she can't move herself by herself in the bed. I tend to want to push for the hospital stay. None of this is being covered by medicare and believe me, the nursing care alone is going to take all available funds. I heard that if a patient has a 3 day hospital stay, then medicare will pay for 90 days at a nursing care facility. I mentioned this to the doctor, and she said yes, but warned that medicare gets to chose this, and they could send her miles away to the state hospice. I am a single parent, and work two jobs, I barely get the time to see her now, if she was 1 1/2 hours away, I would never get to see her. Anyway, sorry this is so long. I just really wanted to know if anyone had any information or experience with brain radiation necrosis? Thanks, Robin

I've been lurking since about March of 2003 when my Mom was diagnosed with this cancer. The only symptoms she had initially was the inability to move one foot side to side. She could move it no problem up and down, if that makes sence? Her internist said it was her age, and to go to Curves. She knew better than that, and got an MRI on her own. Long story short, the whole brain radiation got rid of the 3 spots on her brain, the chemo (after 3 different kinds) finally we got a good response to Iressa. Both the lung and liver spots shrunk considerably! However, she started to act like the brain tumor was back, and slowly but surely she is now completely unable to walk. (another MRI was done, and there is no cancer) She has been in a hospital bed in her room with 24 hour nursing care for over a month. She is alert, her vitals are good, but I am afraid that what she has now is radiation necrosis. Reading here for so long, I never once have read any posts about this side effect. After doing much research on the subject, it does happen, slowly the good brain cells start to die. This can happen 6 months to 2 years after the radiation. Her doctor said that she didn't think that Mom was even going to live this long, so the radiation necrosis did not even concern her. Well, Mom has outlived all expectations, but now she is leaving us not from the cancer, but dying brain cells. Does anyone here have any insight to this? They took her off the iressa, and is considered hospice. I don't believe they should have done this, but perhaps the necrosis will kill her just as the cancer would have. Sorry to be so long and depressing, just wondering???................. Robin