Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,9520,0.htm Sun, 22 Nov 2009 00:00:00 GMT Sun, 22 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/  On 2/11/2007 Jennifer111466 wrote:Hi-I may have missed something and I apologize if so, but did your father undergo surgery, radiation, or chemo?I'm sorry your dad and family is going through this. My mom went through this in the final stages and it was called "Sundowner's Syndrome" but I'm not sure this is the same thing you are describing with your dad. Keep us posted,Jennifer  Thanks Jennifer for your reply.My dad's tumor was surgically removed, and he has just completed his first week of radiation along with chemo.We were told of the sundowner's syndrome.  What a sad thing to have huh?  How old was your mother?  So she would get like this at night too? Kathy L. 4everalways Mon, 12 Feb 2007 00:00:00 GMT  On 2/11/2007 Promises wrote:Whew! You scared me to death!  As a nurse, if I saw a patient taking phenobarbitol, respidol, lexapro, haldol, ativan, and seroquel at the same time I'd freak.  Where is his tumor located?  My husband's is located in his left temporal lobe and has spread to his occipital lobe.  He has all the same symptoms that your dad has, but the only time he can't sleep is when he is on Decadron.  Ativan has been our life saver.  One will just relax him if he gets agitated. We use one if it looks like he's going to have a seizure to prevent it.  We give him two if he can't sleep (that is if warm milk + benadryl doesn't work). I keep the house very quiet.  Only one visitor at a time. Too much stimulation can cause problems.  With the location of his tumor he has lost his verbal skills like your dad and can get very frustrated if he can't explain himself.  I have a numbered alphabet chart that I just printed off my computer to help him communicate.  He's always been mathematically gifted so he is better with numbers.  If he's trying to communicate, I only allow one person (preferably me) to assist him.  Another side effect of pressure in the temporal lobe is selective attention, so if you have 3 people trying to talk to him at the same time it won't work and even makes it worse.  Here's a good brain map that shows what effects pressure/tumor activity is associated with the different lobes: http://www.rainbowrehab.com/news/articles/ I have found it to be spot on.  Understanding what he is possibly dealing with has helped be tremendously with providing an optimal environment for him.   My father's tumor was in the right temporal lobe.  Ativan was given to him in the hospital when he had his seizure and then again when he had the tumor removed.  He got so agitated and combative they had to restrain him, which was awful.  So....we insisted no more activan, try something else.  So then they went to Haldol, but then we were dealing with him being so drugged we couldn't bare that either.  We didn't like this drug at all.  I like your idea about the benadryl.  I would take this any day over the seroquel and will ask the doctor about this.  Who knows, sometimes the simpler things are better.The web site you referred me to is great.  My father's personality has changed.  And although he can talk and talk and talk, sometimes his words are opposite of what he wants to say.  But most of the time, thru patience, we can figure out what he is trying to convey.I agree with you on the stimulation.  Whenever it is a lot of people around, he seems excited to see everyone, but after they leave, it is hard for him to settle down.  How old is your husband? 4everalways Mon, 12 Feb 2007 00:00:00 GMT  On 2/11/2007 Madeline Ruth wrote:How old is your dad? This may be partly from depression.... I would ask the physician about maybe taking an antidepressant, and even adding a sleeping pill, like Lunesta to help him rest. Seroquel is a tranquilizer, and may help agitation some, but usually not the best sleeping pill. I do think you could be correctin your assessment about the communication. He probably is receiving information and processing information, but just can't get the language center to communicate back what he wants to say. My mom experienced this and it was very frustrating for her as well. Steroids may help this, but if he is having the agitation already, that may not be an option as it could exacerbate that. Just a thought. Hang in there.My dad will be 80 in July.  I agree with you on the depression, and at one time they had him on something for depression.  But things just go so out of hand, we insisted that he be taken off as much medication as possible, to see if we could get to the bottom of the restlessness.  Still no answers.  He was only on steriods a few days prior to his surgery, and for about 4 days afterwards.  My brother (who is a pharmasist) did not want him on the steroids for long as they increase the chance of infections.  Unless the tumor returns, and brain swelling reoccurs, he wants to try and keep him off of it.  (my dad is prone to urinary tract infections)It is a catch 22 isn't it?  Thanks for your concern and info.  Anything and everything is so helpful.Kathy L. 4everalways Mon, 12 Feb 2007 00:00:00 GMT  On 2/10/2007 Erniesmom wrote:My son went thru a period of not sleeping at all when he was first dx.  He was taking steroids for swelling during his radiation, but after he completed that, he is now off the steroids and doing just temodar.  He is doing much better as far as sleeping and getting rest.  The temodar makes him ill on the 6th or 7th day after starting the chemo.  He is on the 5/23 for temodar.  At the time, it was difficult to see him so tired and frustrated at not being able to sleep.  You should consult his doctor to see if it is a medication reaction, or possibly just stress.  I am not a doctor and as my son was dx on july 21, 06, I believe I am not the most knowledgeable person on this board for info.  I just wanted to let you know that my son went thru what your father is going thru and maybe you won't feel so alone.  This is a tough thing to go thru and sometimes it helps to know you are not alone.   I do not post much, but I do read everyday.  My prayers to you and your family.Mary Mary,Thank you so much for your concern.  It does feel good to know that we are not alone.  I am sorry that you are having to deal with a child, your son, going thru this.  My heart goes out to you.  Kathy 4everalways Mon, 12 Feb 2007 00:00:00 GMT Hi-I may have missed something and I apologize if so, but did your father undergo surgery, radiation, or chemo?I'm sorry your dad and family is going through this. My mom went through this in the final stages and it was called "Sundowner's Syndrome" but I'm not sure this is the same thing you are describing with your dad. Keep us posted,Jennifer   Jennifer111466 Sun, 11 Feb 2007 00:00:00 GMT Whew! You scared me to death!  As a nurse, if I saw a patient taking phenobarbitol, respidol, lexapro, haldol, ativan, and seroquel at the same time I'd freak.  Where is his tumor located?  My husband's is located in his left temporal lobe and has spread to his occipital lobe.  He has all the same symptoms that your dad has, but the only time he can't sleep is when he is on Decadron.  Ativan has been our life saver.  One will just relax him if he gets agitated. We use one if it looks like he's going to have a seizure to prevent it.  We give him two if he can't sleep (that is if warm milk + benadryl doesn't work). I keep the house very quiet.  Only one visitor at a time. Too much stimulation can cause problems.  With the location of his tumor he has lost his verbal skills like your dad and can get very frustrated if he can't explain himself.  I have a numbered alphabet chart that I just printed off my computer to help him communicate.  He's always been mathematically gifted so he is better with numbers.  If he's trying to communicate, I only allow one person (preferably me) to assist him.  Another side effect of pressure in the temporal lobe is selective attention, so if you have 3 people trying to talk to him at the same time it won't work and even makes it worse.  Here's a good brain map that shows what effects pressure/tumor activity is associated with the different lobes: http://www.rainbowrehab.com/news/articles/ I have found it to be spot on.  Understanding what he is possibly dealing with has helped be tremendously with providing an optimal environment for him.    Promises Sun, 11 Feb 2007 00:00:00 GMT How old is your dad? This may be partly from depression.... I would ask the physician about maybe taking an antidepressant, and even adding a sleeping pill, like Lunesta to help him rest. Seroquel is a tranquilizer, and may help agitation some, but usually not the best sleeping pill. I do think you could be correctin your assessment about the communication. He probably is receiving information and processing information, but just can't get the language center to communicate back what he wants to say. My mom experienced this and it was very frustrating for her as well. Steroids may help this, but if he is having the agitation already, that may not be an option as it could exacerbate that. Just a thought. Hang in there. Madeline_Ruth Sun, 11 Feb 2007 00:00:00 GMT  On 2/10/2007 4ever&always wrote:My father had a seizure in Oct. 2006.  He was diagnosed with having a stroke.  My father cannot have an MRI, due to back surgery years ago and some hardware that was left in place.  It wasn't until a CT was performed with contrast that we began to learn we might be dealing with something else.  In January we learned it was not a stroke, as a CT scan (with contrast) showed a ring enhancing lesion.  It was a tumor, diagnosed at GBM grade IV.  He had surgery to remove.  He has begun radiation and chemo.But he cannot sleep!!!  This has gone on since the first seizure.  And whatever med they give him doesn't seem to help.  (I mean unless he is completely drugged up, and we don't want that)  It seems that the cancer has effected him in a way that he is hyper, restless, AND worst of all can exhibit VERY strong obsessive compulsive traits.  The only medication that he has been on since the very beginning is dilantin.  He has been on (forgive if spelling is wrong) phenobarbitol, respidol, lexapro, haldol, ativan, and seroquel just to name a few. But his failure to sleep has us all concerned.  How much longer can he go on like this?  Not to mention what it is doing to my mother.  If he cannot get rest what good are his treatments going to do?   Has anyone else had a loved one who has experienced this?  Also, he stays cold ALL THE  TIME.My father will be 80 in July.Any advice, thoughts, etc. would be greatly appreciated.       Thank you all for your replies!All of the medications I mentioned were prescribed along the way, hoping they would help.  But....they didn't.  The haldol and ativan were presribed at times while he was in the hosptial, as he would not sleep and became very agitated.  And this was never given at home. But for now, he is only on Dilanton for seizures and seroqual as needed at night if he becomes very restless.  My mother only resorts to this (the seroquel) if it gets really restless.My brother is a pharmacist and has helped review the meds.  So other than my fathers standard High Blood Pressure meds he really isn't on a lot of other meds except the tamador and dilanton. (and seroquel as needed)  But still.....he cannot sleep and he is so very restless. He did not exhibit any signs of altz. or mental problems before his first seizure.  He still drove, did the grocery shopping, etc.   But now he gets confused a lot, and he can not be left alone anymore.  At times, he has a hard time communicating what he wants to say.  It is very sad because he can get real frustrated when we don't understand what he is trying to say.  I am sure this must be awful for him.   Physically he is fine, no limitations whatsover, but mentally, he struggles.  I think in his mind he knows what he is thinking, but at times it just comes out all jumbled.  He mixes present day stuff with past stuff verbally.  But within his mind, I think he knows what he is saying. As far as the sleep, I think the doctors may think we are just exaggerating this, that we are just tired, etc.  But....he goes to his doctor Tuesday (one we have only seen once) and I will again press this issue.  I just want him to be able to rest so very badly.  I think with rest, his day time hours will be better.  I think his mental fog will clear some with rest.  I mean, a healthy person would become ill after months and months with very little sleep!Thank you all for your support.  My thoughts and prayers are with each of you, for however and whomever this thing called cancer has entered your lives.  4everalways Sun, 11 Feb 2007 00:00:00 GMT My prayers are with you and your family.  I say get a second opinion and get to the bottom of your father not being able to sleep. Please at his age, he needs to be comfortable.  If you get a chance, please read my story "Cancer Again! Now What?".  Take Care & God Bless.  Aloha, Paulette Aloha_Wahine Sun, 11 Feb 2007 00:00:00 GMT Wow! respidol, lexapro, haldol, ativan, and seroquel.....  Is all of this from the same doctor?  Does he have a history of mental illness or alzheimers?  I would urge you to take all of his prescriptions to a single reputable pharmacist and have them reviewed.  Promises Sun, 11 Feb 2007 00:00:00 GMT My son also took dilatin, in the beginning.  So ask your doc if this is a system of his meds.  Erniesmom Sat, 10 Feb 2007 00:00:00 GMT Is he on dexamethasone/decodren that will certainly interrupt sleep cycles. Susan Alexia Sat, 10 Feb 2007 00:00:00 GMT My son went thru a period of not sleeping at all when he was first dx.  He was taking steroids for swelling during his radiation, but after he completed that, he is now off the steroids and doing just temodar.  He is doing much better as far as sleeping and getting rest.  The temodar makes him ill on the 6th or 7th day after starting the chemo.  He is on the 5/23 for temodar.  At the time, it was difficult to see him so tired and frustrated at not being able to sleep.  You should consult his doctor to see if it is a medication reaction, or possibly just stress.  I am not a doctor and as my son was dx on july 21, 06, I believe I am not the most knowledgeable person on this board for info.  I just wanted to let you know that my son went thru what your father is going thru and maybe you won't feel so alone.  This is a tough thing to go thru and sometimes it helps to know you are not alone.   I do not post much, but I do read everyday.  My prayers to you and your family.Mary  Erniesmom Sat, 10 Feb 2007 00:00:00 GMT My father had a seizure in Oct. 2006.  He was diagnosed with having a stroke.  My father cannot have an MRI, due to back surgery years ago and some hardware that was left in place.  It wasn't until a CT was performed with contrast that we began to learn we might be dealing with something else.  In January we learned it was not a stroke, as a CT scan (with contrast) showed a ring enhancing lesion.  It was a tumor, diagnosed at GBM grade IV.  He had surgery to remove.  He has begun radiation and chemo.But he cannot sleep!!!  This has gone on since the first seizure.  And whatever med they give him doesn't seem to help.  (I mean unless he is completely drugged up, and we don't want that)  It seems that the cancer has effected him in a way that he is hyper, restless, AND worst of all can exhibit VERY strong obsessive compulsive traits.  The only medication that he has been on since the very beginning is dilantin.  He has been on (forgive if spelling is wrong) phenobarbitol, respidol, lexapro, haldol, ativan, and seroquel just to name a few. But his failure to sleep has us all concerned.  How much longer can he go on like this?  Not to mention what it is doing to my mother.  If he cannot get rest what good are his treatments going to do?   Has anyone else had a loved one who has experienced this?  Also, he stays cold ALL THE  TIME.My father will be 80 in July.Any advice, thoughts, etc. would be greatly appreciated.        4everalways Sat, 10 Feb 2007 00:00:00 GMT