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moocow35

Brain radiation necrosis?

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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

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Just some questions:

Why is she in bed 24/7 if she is alert? Why does she need around the clock nursing if she is alert and has good vitals? I guess I am not understanding her symptoms or why she was taken off Iressa, if it kept her tumors stable. Have you talked to her Doctor? I am not being nosy, but just asking the questions that maybe someone here will want to know to be able to help.

I am sorry we had to meet this way, but glad you found us. No need to lurk, unless you want to. I usually add prayers for lurkers, too.

I hope someone can give you more help than I .

Keep us posted.

elaine

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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

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Dear Robin,

I am so sorry for all you and your mom are going through. Do you have any other family members to help you? It sounds like a lot for you.

Also, have you considered a different doctor?

I would like to say that if your mom is comfortable and alert in her own home with 24/7 home health care then I would do everything possible to continue that. I know it is expensive but if the funds are there.....there is no better way to spend them...In my humble opinion.

Thinking of you both,

Elaine

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Robin

I didn't mean to pry, but wanted to know more about the symptoms so maybe others might recognize them. I guess its either neurological, systemic weakness or radiation necrosis as you suggest. It is bothersome that the Doctor isn't being more proactive. Is this her primary Doctor or the onc? Do you have other options as to doctors? Someone who might try to get to the bottom of what is happening? I am glad she is in no pain and that you can be close to her.

My love to you both. I hope someone on the board can offer some other suggestion. Pls consider another Doctor.

love

elaine

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Hi

I am really sorry to read about your Mum. I have no knowledge of radiation necrosis. I agree with Elaine that the attitude of your doctor doesn't sound great. I would definitely be at least getting a second opinion. Is it possible that your Mum's symptoms could be due to something else like a stroke, or something similar? It seems weird to me that all her other vitals are OK if the whole brain is sufferring from a necrosis. Please keep us posted on how things are going.

With love

Jana

xxx

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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

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Robin, my Mom had the same symptoms your mother is having. She just gradually got weaker and weaker. She finally ended up having a bad stroke which left her bedridden. She did not have any brain radiation, just radiation to her lung and two doses of chemo. The doctors didn't really know what caused the stroke. She had a previous stroke a year prior. I think her system just couldn't handle the treatments plus she was not eating or drinking enough. It is very hard to watch your mother go through that. My heart goes out to you. The doctor's just blamed it on the cancer. She had a catscan of her brain after the stroke and there were no tumors in her brain. She had no pain either. I wonder if the cancer and/or radiation effects their nervous system somehow. I don't think even the doctors know what effects cancer has on people. They really don't tell you enough about the potential dangers of these treatments.

Lyn

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Hi Robin

I am so sorry that you and your Mom are having such a rough time right now. I agree with everyone else that it sounds strange that they can't really tell you why this is happening. I also agree with Lyn in that patients should be given more information about the side effects of treatments. So many people are afraid of trying alternative treatments because of the potentially harmful side effects, but it seems to me that conventional medicine is just as dangerous!!

It sounds as though your Mom has put up a good fight against this disease, and I am glad that she is not in any pain.

I will be thinking of you both, and hoping for a miracle!

Karen

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Hello and I'm very sorry to hear that your Mom is not able to walk anymore. I do know that a certain part of our brains isresponsible for locomotion. Maybe the radiation damaged that part of the brain or the cancer has attacked that part of the brain. Hope your Mom is comfortable and not in any pain. Prayers for the both of you!

Sharon

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My father is having similar symptoms after WBR. But the weakness in the arms and legs began before the radiation -- it was due to high doses of Decadron. Is your mother still taking any meds that might be contributing?

Dad just went home from rehab today, but he's not very lucid any longer. He knows who we are and where he is, but he has what I think are hallucinations. He asked the other day about the awning on the car. And he told me that he never learned to read (not true). He's been saying some weird things, and he can't seem to retain instructions from one physical therapy session to the next. A CT scan on Thursday showed that the brain mets are stable.

No pain, no difficulty breathing. Just total muscle atrophy and mental confusion.

Thanks for posting. Now I'm going to research radiation necrosis. I'll let you know if I find anything interesting about reversing or coping with it.

Hope things get better for your Mom. It's excruciating to see someone you love deteriorate and feel so very, very helpless.

Pam

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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

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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

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Guest NowakowDA

What level of Decadron is your mother taking. My Mom (age 79) getting 4 mg twice a day of Dexamethason (a generic form of Decadron). He Rad Onc said that it would stop her brain from swelling. She has two tumors in the back of her head. One of the tumors is still growing. I've found out that this is a very powerful drug with many side effects. It can cause mode changes, confusion, disorientation and hallucinations. It can also cause a form of delirium commonly called sundowning. If the person is already experiencing these conditions the steriod can make them worse. Her doctor said that without the drug, the presure inside her head would increase untill she had a stroke. She has had several episodes of delirium ome before and three after starting the Dexamethason.

Mom is also getting WBR. She's had three treatments so far and is due toget a total of fourteen. The only effect has been fatigue, which starts about mid day and lasts till early evening. Her primary care provider said her symptoms maybe caused by the disease. the Dexamethason, her age or all three. To control her episodes, Mom's PCP (primary care provider) gave her Risperdal (1 mg). These have all but stopped the episodes.

Don

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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

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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

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Hi Robin, I think from what I remember reading is that you can usually go one or two weeks without food or water.

My Mom went through this, too. It is so heartbreaking. She was in a Nursing Home, so they took care of her (thank God). They did a wonderful job, too. I was only five minutes away so I could go over every day and check on her. It's got to be 100 times harder when you're taking care of her yourself. At least she is in no pain. My Mom wasn't either. She was on a feeding tube, though.

Lyn

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Hi Don, Robin & Pam,

I Had brain surgery in April 2004. After healing, I had one treatment of stereotactic radiation. I had the option of WBR and said, no. I was on decadron also, from February to just a week ago. Max I had was 6mg per day and that was only for three days after surgery. I was then on 1mg to .5mg total per day. You do have to taper the dosage, one can't just stop. It does break down muscles, causes moodiness, enhances appetite and makes you unable to sleep. Doctors try to put you on high doses of this medicine, the docs say it is protocal based on 100 people. That's not good enough protocal for me. I was my own advocate and said no, 1mg was max. Doctors agreed and respected what I said. It sounds like your mom and dad are being given high doses of this medicine. It is better to start low and if more is needed, then go to a higher dose. It's harder to come down from meds. Especially if your parents are sensitive to medications. This is just my opinion. Your doctors sound frightening and almost like they don't want to be bothered. They would be so fired, this is life we are talking about. No compassion for the patient. They make things up as to why something is happening because they don't know or have an answer. They haven't experienced what is happening to your parents or how to rectify it. All patients react differently. My friend's husband just had surgery for colon cancer, was on pain pills and was hallucinating (sp?). She asked doctor why it was happening and doctor said because he was in his room alone. Go figure, doctor didn't want to tell her he had been over medicated. He was sensitive to the meds, not used to taking them. I would find new doctors...

I hope I haven't upset anyone, it is not my intent. This is my experience and I just wanted to share it with you. I care what happens to everyone here on this site...

God Bless and all are in my prayers each day,

Karen

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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

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Hi Robin, Welcome!

So sorry that your Mom is so ill. I too agree that doctors should tell people more about the side effects of medication before administering it. When my doctor told my husband and I about Taxotere you would have thought it was going to be a "walk in the park" compared to Cistoplatin but the side effects have been much worse. Why don't they give us the facts!

I will pray for you and your Mom

Paddy

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:cry: 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

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Robin, I am so extremely sorry to hear about the loss of your mother. I know what a sad time this is for you, and please accept my deepest sympathy. Could I suggest that you post on the grieving forum so that others will know about your mom and talk to you about it. There are so many that know exactly what you're going through and will help you through this.

All my love and sympathy,

Peggy

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