Gbm Prognosis After All Treatment is Stopped.

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Gbm Prognosis After All Treatment is Stopped.

by Imabrat on Mon Jun 27, 2005 12:00 AM

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Hi After reading the posts on the message board I feel I need to write and ask more questions. My cousin is 43 and was diagnosed May 2004. He sufferred a seizure at that time and underwent an MRI which discovered he was at stage 4 GBM. What followed was radiation and treatment with chemo pills. About a month ago he sufferred another seizure and since then he has been rapidly declining. First he is losing his muscle control on his right side He is having difficulties walking as well. He is unable to complete forming his words as he knows what he wants to say but cannot form the words. At the time of his last seizure we were told we would lose him within 2 months. It has now been a month. I'm scared for him and our family. I've read many posts of people asking..what is next ; what can a family expect, how long can this go on for ? How long can he survive now that treatment is no longer an option ? They were hoping to do surgery and the new virus injections however last week he was told there is nothing more they can do for him. The Dr's have increased his steroids to help him cope with the headaches. I have been searching the net for days trying to find more answers of what to expect and can not ? Please provide me with any infromation you can. This is a very difficult time and my heart goes out to all families that have also been affected by GBM. This disease strips people of their dignity there self worth and is very difficult to watch somebody you love suffer so much. Thanking you in advance for any guidance or support you can offer at this time. Brat

Gbm

by Marmie on Tue Jun 28, 2005 12:00 AM

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Hi Brat, I am so sorry to hear about your cousin. You are right, this is such a terrible disease to deal with for everyone involved. My husband has a GBM also. Has his tumor grown back and they don't feel they can operate again? My husband has thankfully not had a reoccurance of his tumor at this point and is on Temodar. The side effects of this treatment are hard to watch as it makes him quite sick and fatigued. I think that is the hardest thing, to watch someone who is healthy and vibrant failing so much. I don't have much to offer you, but my thoughts and prayers will be with you and your family. Patty

Gbm Prognosis After All Treatment is Stopped.

by Imabrat on Tue Jun 28, 2005 12:00 AM

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Hi and thank you for your kind words of support. Yes his tumor has come back. They have now increased his steroids I believe he is taking one called Dexamethasone from everything I have read about the use of this steroid it is for palliative care. I've also read online that this is something they try to do to allow some quality of life while the tumor grows. The side effects of this steroid are not so good either. If you read about it online you will probably find the same as I did, that it is used mostly for palliative care, in high doses. He is currently receiving 14 mg a day 2 x a day I believe or 14 mg a day once a day, excuse me for not knowing the exact amount. The other dilema I am dealing with through this is his siblings. Both my aunt & uncle have passed away and the older brother especially is becoming very protective and selective as to who is able to help my cousin and when. While I certainly am so very grateful that my cousins brother is here living with him now & able to assist I am also there on the request of my cousin that is sick. We are close and I have asked him "do you want me here?" he says yes, "can I hold your hand or rub your back?" he says yes. His brother that is there with him does not understand our closeness our comfort zone and I am being pushed away because of the fact to some I am just a cousin... I am not a stupid woman, I know my place in I do not expect to be on the Dr's top 10 list but I certainly do expect if the time comes and my cousin is in ICU that I am included in the list of people allowed to be with him. Since the gbm was diagnosed, through all treatments and such my cousin & I have been in contact, sometimes daily. My cousin knows all of my friends and he is my brother by heart, my cousin by blood only. We use to go out for wings about 8 of us 1x to 2x a month, play pool and chat. Part of our group also includes a very close friend of mine diagnosed with Hodgkins Disease 3 months after my cousin. It is a result of these 2 people so closely in our lives that my family (husband & kids) decided to shave our heads to show support for Cancer. My friend was told last week, she is now currently in remission. How ironic was it that within the hour of her call I received the news that my cousin was not going to have any further surgery. No more treatments, nothing, its all day to day and palliative from this point on. Talk about God giving me the balance..and all within an hour...ying.yang! So I don't know anymore I wish for my cousins sake that he goes swiftly and does not have to lose anymore dignity then he is feeling he has lost already. I spend my time with him as he requests when he requests and doing what he requests, even if it is just being there in silence to hold his hand. I wish I knew how long we would have to continue like this. At the time of his last seziure they said he'd be gone within 2 months. We are now entering our 2nd month. God Bless anybody who has to go through this and the loved ones supporting them through the horrible journey. It is the hardest things I have ever had to do and I feel we are just beginning.

Gbm Prognosis After Treatment Stopped

by Hopeful30 on Wed Jun 29, 2005 12:00 AM

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Hello, I am writing to you because I have dealtt with this issue first hand had only 6 months ago. My mother was diagnosed with GBM 4 and by the time she was diagnosed it was already too late. Her tumor was not operable and she turned down chemo and radiation because they told her it would only delay her death by 6 months, if that. When treatment is stopped, the patient does receive palliative care, the quality of which will depend on who is providing it. My mother returned to her home under the care of VNA hospice who communicated with her doctors at Mass General in Boston, but I was the primary caregiver. You are not in for an easy time I am afraid. Watching someone's brain deteriorate and the accompanying neurological symptoms is very hard. It was certainly the hardest thing I have ever had to do, and my heart goes out to anyone having to do to the same. I am sure that not all cases are the same. It depends on the location of the tumor. In my mother's case, the tumor was deep within the right parietal lobe. Her cognitive functions were intact. She recognized us, could talk and was able to understand what was happening to her. She had some short term memory loss, but other than that she was very easy to communicate with. Her spatial relations were completely gone from the day she was diagnosed. She had no road map and could not navigate anywhere. She also had left side body neglect. When she was discharged from the hospital, she went home and stayed in a hospital bed. She only got up to go to the barhroom and had to be led and directed every step of the way. As the tumor grew, her ability to walk was affected and it was much harder to help her up. Two days before she died, she could not stand and support her weight. We had to lift her. She also seemed to lose her ability to see. I don't believe she was blind -- she just could not accurately interpret what she saw. She could not recognize the TV, etc. She was also in constant pain from bowel cramps, had cold feet and was unable to relax -- very twitchy legs. Her headaches were not severe, but I believe she felt increased pressure in her head. She told me it felt like she had hit her head. The doctors told me that she would eat less, and become sleepier and sleepier and die in her sleep due to increased cranial pressure. She did not. She was awake very often, and she was terried of what would happen to her. We think that she may have had a mild seizure or some uncontrolled body movements. She had bruising on her extremities. The hospice nurse told me they did not think her death was imminent and that she would stop eating all together a week of so before she died. Guess what? That didn't happen either. Her breathing became louder and one night at 4am she woke up and sounded like she was vomiting, but nothing came out. Her left side looked paralyzed and her speech was slurred. Her last words were "Oh dear God..." and then she was not conscious. My sister was with her at the time and did not call anyone -- she panicked. She was supposed to call hospice. By the time I got there 4 hours later, she was still unconscious or appeared to be. She died without ever waking up opening her eyes again. I believe and the hospice nurse confirmed that she probably had a hemmorhagic stroke. The tumor simply got so large it burst something inside her head. She did not die peacefully in her sleep as the doctors told me. I hope I have not given you too much info, but I wanted to know when I was in your position. You will see progressive deterioration and signs that the body is shutting down. It is horrible. In my case, hospice was not a responsive as I would have liked. I had to wait more than an hour for them to show up after she died to provide a death certificate - not a pleasant time. In my mother's case, although given 6 months to live when discharged from the hospital, she only lived 10 additional days and a total of 3 weeks post diagnosis. Hopefully your time will not be too long. As much as I didn't want her to die, watching her suffer and die with this horrible disease was almost more than I could bear....it will take a long time for those memories to fade, and now, 6 months later, there is not a day that goes by that I do not remember and mourn for my poor mother... Good luck, my prayers are with you.

Gbm Prognosis After Treatment Stopped

by Imabrat on Wed Jun 29, 2005 12:00 AM

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Thanks for your message Michelle. I'm so sorry to hear of the loss of your mother. Your email made me fearful for what lies ahead yet courageous to want to be there for my cousin. Was your mother also on steroids towards the end? The hardest part is my cousin has a 4 year old son he gets for visits. His son is his motivator, however it is difficult for my cousin to spend time with his son as he is so very tired and weak. He also says he is hungry but doesn't know for what? I wish I knew what to do or how to make this easier for him. The facts and truths you shared with me are more than any of those close to me have offerred and I thank you for that. I've been searching online and trying to come to some understanding of this horrible journey ahead and gotta tell you the information you shared is very valuable to me at this time. I pray my cousin does not suffer for too long with this. I have been so desparately searching for answers as to what might lie ahead and you've helped...although grim any information to help is useful at this time. Again I sincerely thank you for answering my email and sharing your experience with me.

Gbm Prognosis After Treatment Stopped

by Hopeful30 on Wed Jun 29, 2005 12:00 AM

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I shared this information because I know how I felt when this was happening to my mother and to our family. My mother was initially sent home with hospice without decadron. The doctors said it can sometimes prolong the end and they didn't want to do that. They also said her swelling did not seem too bad? She did not have violent headaches, but the hospice nurse did add a very small amount of decadron a few days after she was home. She was also on an antidepressant, and dilantin for seizure control, although she never really had a seizure. I believe some of the discomfort she suffered with bowel cramps was a reaction to the dilantin. She was only switched to another drug, neurontin, 2-3 days before she died. She seemed a little more relaxed on that. Your cousin's case is especially tragic since he will be leaving a 4 year old child. I have 3 children myself, aged 8, 8, and 11 and cannot imagine the horror of leaving them. I am truly sorry for your cousin. My children were extremely close to my mother, however, and were very sad, but they seem to be doing OK. I did not want my mother to die and miss her every day, but more than that I did not want her to suffer and I do not know what I would have done if she had lasted 6 months or more. Quality of life is very important with this disease and I read so many accounts of people fighting what is essentially an unbeatable condition. The most you can pray for is a peaceful ending...my thoughts are with you as you face your ordeal. Michelle

Gbm

by Garland on Thu Jun 30, 2005 12:00 AM

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Hey brat...thanx so much for posting...I’ve learned more from you experience and the replies to your posting than I’ve been able to find out since I was dx in march. I’ve had the radiation and the 1st round of temodar and I didn't really have much trouble with it. Now they want me to double the temodar and I’ll admit I’m getting a little scared. I’m taking 18mg steroids and it really sucks. I’m just about ready to throw in the towel and try to have some dignity before I check out...eyesight is getting foggy an my left side is starting to play tricks on me. They told me about the implantation of the seeds but I’m not going to do that…the major surgery could leave me worse than i am now. Thank you all for you posting...let me hear from you.

Gbm

by Imabrat on Fri Jul 01, 2005 12:00 AM

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Hi Thanks so much for your post as well. I am sorry to hear about your diagnosis and I pray you will be one of the successful statstics we read about.The eyesite part from what I read could be a side effect from a medication ?? Not sure though my cousin says he sees lines and is having troubles focusing. He also can no longer sign his name due to the shaking. When he is tired he can not concentrate to form his words and get them out. When he is relaxed and not overly stimulated he seems to do much better. Today I am having a family bbq with about 30-40 friends relatives coming over and my cousin to share in good times, while we can. We all love to sing so we are doing a karaokee afternoon celebration. The whole day is all about my cousin ! The continuing saga of the family is that the oldest brother now thinks I want some of my cousins possessions when he passes and he basically wants me out of the picture. I am sad for this other cousin of mine how great is his guilt, his anger that he can not appreciate the love that my cousin that is sick & I have shared through our liftimes. He is my brother by heart, cousin by blood. How sad is it that people think they know soo much about somebody and spread untrue things. The facts are the only thing I want from my cousin that is sick, I am getting right now. His love, his time, being able to talk to him, share with him, laugh with him, making more memories. That is all I want I have no desire for possessions and people are so twisted sometimes to just not get it !! I have a close friend who just lost her brother 3 months ago to GBM she tells me they had 5 good years with her brother and the last 6 months being the hardest. My heart goes out to anybody fighting this type of cancer it truly appears to be one of the worst and most agressive. One day at a time is all anybody can really do and people who are ill appreicate so much more than those of us that are taking each day for granted. I do try to appreciate and as I have said in my previous posts when I feel pity I just go to the big picture of what my cousin must be feeling and my pity leaves as fast as It comes. This is not about me this is all about my cousin and his wants, desires and dreams. Our time is running out faster than I want to let go. The daily progression of the disease is horrifying. I do not know what else to share as I am only on the outside looking in and trying to find a way to support my cousin. I have been online daily always looking for more information and hope. I am not privy to alot of the information with my cousin other than what he shares and what his sisiter shares with me. I call him every other day, see him every chance I get. I could ramble on but won't. Last I know my cousin is still on about 14-15 mg of steroids again not sure if that is daily or per dosage. He is also taking more tylenol to try to help alleviate the pain. He has headaches daily and is hungry but does not know for what. My cousin has a home care nurse coming in weekly and at this point does not want to go to a Hospice. I do not know what is coming at us other than from what I have read in the posts from this site. No where else have I found the information shared about this journey. Each journey is different but reading about others helps me understand what might possibly be ahead. Thanks again for your time, posts and I wish you all the best with your treatment. Brat

Gbm4

by Garland on Fri Jul 01, 2005 12:00 AM

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Don't sweat the small stuff and keep on doing what you're doing...only you know your heart and I can tell where that is. Sometimes I think I'm the only one who knows what I'm going thru and its almost like no one else cares...so definitely keep on doin it!

Gbm Prognosis After Treatment Stopped

by Imabrat on Sun Jul 03, 2005 12:00 AM

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Thank you so much for sharing your experience and information with me Michelle. One of the hardest things is also trying to prepare for what is coming next. Each day I see changes in my cousin. Each day I feel as though he is going farther and farther away from us as the tumor progresses. We had a family bbq on Sat it was amazing. He did very well however with the increase in his desamethasone to 12 mg twice a day he is now starting to experience side effects of hiccups. I saw him yesterday and the home care nurse was there also. He had difficulties breathing through the night because of the hiccups so they had the nurse come in & check him over. He is also experiencing a lazy right eye and the eye appears to be free floating every day something is happening to him. This is a very difficult time for us all. I am going to seek some guidance and couselling from the Cancer center in our area to help me. I need to learn how to be there for my cousin without reacting to every change. I am the type of person that normally runs from a room in a crisis screaming "help". I need to find the courage and strength to stay this time. Again, thank you for sharing with me. I wish you and your family peace and strength.
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