Glioblastoma End Stage Symptoms

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Glioblastoma End Stage Symptoms

by my_Dears_Granddaughter on Sun Jan 08, 2006 12:00 AM

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I am new to this--thru my grandmother who was recently diagnosed with glioblastoma grade 4. She is 90yrs old. At her age, treatment options are small and not very effective. After the diagnostic craniotomy, we have decided not to pursue any treatment. My question is: what should I be looking for as this tumor progresses as far as her physical/mental and emotional states are concerned? She lives w/me and I am not finding any info on line related to the end stages of this illness. The doctor has told me what to expect, but if I could hear/read it from actual people who have witnessed it as the caregiver, I would appreciate it. Thank you. k

End Stages

by Erica on Sun Jan 08, 2006 12:00 AM

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I am very sorry to hear about your grandmother. My father is 53yo and diagnosed a year ago. There isn't many options for him either since the tumor is in the center of his brain. I feel he is in his last stages now. Someone mentioned a web site www.brainhospice.com. It is a timeline of symptoms and stories from the caregivers point of view. Good Luck to you. Erica

Brain Tumors

by laura_c_2 on Tue Jan 10, 2006 12:00 AM

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My mother is also sick with brain and lung cancer. She has had it for almost 4 years. She feels very lucky that she was able to battle it for so long. She is now scared. She doesn't know what is going to happen. No one really says.(all doctors)I am scared too. I will check out that website brainhospice.com thanks

Sxs to Look For in Gbm Decline

by caring_daughter on Fri Jan 20, 2006 12:00 AM

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Dear Loving Grand-daughter, How blessed your grandmother is to have you for her care provider! How blessed you are to be spending this time with your grandmother too. My dad was diagnosed with GBM on Aug. 29, 2005, at the age of 67 so I can understand many of your emotions at this time. It is sooo devastating to learn about this type of brain tumor. They say that information is empowering and to a certain extent this might be true. In my seeking information, I came across a web site, entitled www.brainhospice.com. It describes a daughter's journey thru her dad's situation with GBM, including symptoms to be aware of, the final days, etc. There is also a section for connecting with other care providers. Have you had a chance to talk with your grandmother's doctors about hospice care? Perhaps this isn't appropriate now. It would provide some in-home assistance so you are not the only one to care for your grandmother. They provide nursing care, spiritual care, assistance with hygiene, meals, etc. Perhaps the yellow pages in your phone book has some information on hospices in your area or you could ask your grandmother's oncologist about this. I was wondering if your grandmother is on any medications to prevent seizures and to reduce swelling. My dad has been on these since he was diagnosed prior to surgery and his symptoms were greatly alleviated. Hopefully, you will find that this is a helpful place to obtain information as well as support. I have found this to be true as my family walks this journey with my dad. Take care, Rondi

RE: Glioblastoma End Stage Symptoms

by MOMP3 on Mon Jan 28, 2008 12:00 AM

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On 1/8/2006 my Dears Granddaughter wrote:

I am new to this--thru my grandmother who was recently diagnosed with glioblastoma grade 4. She is 90yrs old. At her age, treatment options are small and not very effective. After the diagnostic craniotomy, we have decided not to pursue any treatment. My question is: what should I be looking for as this tumor progresses as far as her physical/mental and emotional states are concerned? She lives w/me and I am not finding any info on line related to the end stages of this illness. The doctor has told me what to expect, but if I could hear/read it from actual people who have witnessed it as the caregiver, I would appreciate it. Thank you. k

Sorry to hear about your grandma. My dad was diagnosed with gbm almost to the date 2 years ago.i too am looking for the same info as well.my dad is 61 yrs old. Was paralyzed almost instantly with his diagnosis.he had a craniotomy 2 years ago next month. They gave him then 6 months with no treatment 9 with. He had his radiation and chemo and has been on hospice the past 8 to 9 months. At this point he has developed pnemonia. He is in the hospital and was not able to swallow his meds. The doctor says after an therapist evaluates him and he has an mri they will have a better idea of the progression of the tumor.basically if he does poorly on his therapy eval. They said maybe 2 to 3 weeks. Maybe a little longer. I will know more hopefully tomorrow.he has been through so many ups and downs and is so not the norm with this disease that the outcome can be very unpredictable. Just when he goes downhill and i think this may be it he seems to snap out of it and hang around with me longer. I am greatful for that. On the other hand i hate to see him like this. His mental status is so poor at this point. He has no quality of life. Maybe i know the answer to my own question. Just can't seem to accept it. I wish you much luck with your grams. God bless. Alicia

 

 

RE: Glioblastoma End Stage Symptoms

by bortre on Mon Jan 28, 2008 12:00 AM

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I am so sorry to hear about your Grandmother.  I just lost mine (natural causes) at age 91 last week.

I am also in a tough fraternity of losing a child to Glioblastoma three years ago on Feb. 15.  He was my first born and only 23 when he passed.

From the diagnosis, the Doctors stated that the average time span was 18 months. It was amazing the information they have on this terrible disease as they told us week to week just what to expect. Toward the end they even inforned us almost to the day how things would play out.  They said that every day they could keep him going was one day closer to a breakthrough. He accepted many trial treatments to help others to live longer.  He was so strong and worried more about his mother, siblings and I than himself.

I will pray for your Grandmother and for you as this can be a tough road without the Lord at your side.  I wish you the best and am here if I can be of any assistance. Take care, your friend  

RE: Glioblastoma End Stage Symptoms

by LucieRiley on Fri Aug 24, 2012 04:02 PM

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On Jan 28, 2008 12:00 AM MOMP3 wrote:

 

On 1/8/2006 my Dears Granddaughter wrote:

I am new to this--thru my grandmother who was recently diagnosed with glioblastoma grade 4. She is 90yrs old. At her age, treatment options are small and not very effective. After the diagnostic craniotomy, we have decided not to pursue any treatment. My question is: what should I be looking for as this tumor progresses as far as her physical/mental and emotional states are concerned? She lives w/me and I am not finding any info on line related to the end stages of this illness. The doctor has told me what to expect, but if I could hear/read it from actual people who have witnessed it as the caregiver, I would appreciate it. Thank you. k

Sorry to hear about your grandma. My dad was diagnosed with gbm almost to the date 2 years ago.i too am looking for the same info as well.my dad is 61 yrs old. Was paralyzed almost instantly with his diagnosis.he had a craniotomy 2 years ago next month. They gave him then 6 months with no treatment 9 with. He had his radiation and chemo and has been on hospice the past 8 to 9 months. At this point he has developed pnemonia. He is in the hospital and was not able to swallow his meds. The doctor says after an therapist evaluates him and he has an mri they will have a better idea of the progression of the tumor.basica lly if he does poorly on his therapy eval. They said maybe 2 to 3 weeks. Maybe a little longer. I will know more hopefully tomorrow.he has been through so many ups and downs and is so not the norm with this disease that the outcome can be very unpredictable. Just when he goes downhill and i think this may be it he seems to snap out of it and hang around with me longer. I am greatful for that. On the other hand i hate to see him like this. His mental status is so poor at this point. He has no quality of life. Maybe i know the answer to my own question. Just can't seem to accept it. I wish you much luck with your grams. God bless. Alicia

 

 

HI I have just read some of these stories and thought I would reply. So sorry to hear about all your relatives who have this. My mum is 65(a very young and attractive business woman) She got diagnosed with a Brain Tumor in July last year after being mis diagnosed as sinusitus for 11 mths!! we demanded an MRI and found she had a Tumor. She was told it wasnt aggressive looking and to come for a rescan 1 month later which showed it was agressive and a craniotomy was booked for two days later. It took weeks to get a definite diagnosis which they said was a grade2/3 astro and gave my mum 6 weeks radiotherapy. We waited 6 weeks after treatment for another scan to be told it had worked and the remaining10% they didnt get in surgery had shrunk. 3 weeks later mum started shuffling and losing her memory/confusion etc. We rang back to Christies and they scanned immediately and said that the Tumour had come back and was now a grade 4 GBM!!! 3 weeks after being told all ok ??.. Mum was told 12 weeks if no treatment and poss 6 months with Chemo.. We started the Oral Chemo immediately and after 1 cycle mum was using a walking frame,2 weeks later was in a wheelchair and incontinent and her mental state was not good. She only managed 2 cycles and couldnt have anymore. We chose to take her on a family cruise sailing from UK against doctors advice(who wanted us to postpone!! until when? ) It was hard work as by day 2 she was double incontinent and not weight bearing at all...but we did it!. Upon our return we went to the consultant who said her deterioration was so much so that she only had weeks left to live. Mum went into an end of life Nursing home and is still here 9 weeks later but her quality of life is very poor as she cant eat much nor can do it herself and liquid is minimal. I have learnt so much and know every change she makes and what it means. We have had her on Clomipramine which is the breakthrough drug that is being used in Brain Tumours and feel this is why she is still here but wish we had been given this right at the start when quality and movement would have allowed some type of lifestyle. My heart breaks every day as my sister and i spend 2-5 hours sat by herside waiting. There is no cure for a GBM and they all behave differently but quality is definately the most important thing as I would have rather had 2 months of pure quality travelling to all the places my mum wanted to see than this extended 6 months watching her get fed,cleaned, changed , bedridden everyday without much mental state and cannot talk anymore. It is a cruel cruel disease and my only consilation is that my mum will not be in any pain when she passes. It is a pure rollercoaster of emotions as day by day youhopes are raised and shattered as these tumours perform in different ways. I have also had to deal with all her affairs and even funeral arrangements in prepartion which is something you never think you will have to deal with. i am thankful i have had the time to spend with her and want this to be over for her dignity but dread the final moment of saying goodbye..my heart is breaking everyday at the thought. God Bless all of your relatives and stay strong for them  Lucie x

RE: Glioblastoma End Stage Symptoms

by StanleyT on Fri Aug 24, 2012 08:11 PM

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brainhospice.com gives a good description of typical end stage symptoms, and some sensible advice on how to manage them.

That said, everyone is different, because the brain is most complex object known in the universe and thus  unpredictable. It also depends where the tumour is located. My wife's is in the left parietal and temporal lobes, and she has had speech and motor problems, and dyspraxia, but no personality changes or reduction in intellect.

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