Symptoms of last stages of GBM

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Symptoms of last stages of GBM

by golferdawn on Tue Dec 30, 2008 12:00 AM

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Please, could anyone please let me know what the typical symptoms are at the end with GBM?

RE: Symptoms of last stages of GBM

by daybyday on Tue Dec 30, 2008 12:00 AM

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I am so sorry.  I believe one of the best resources available to answer your questions is   www.brainhospice.com .  My thoughts are with you.

RE: Symptoms of last stages of GBM

by John_Bham_uk on Wed Dec 31, 2008 12:00 AM

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On 12/30/2008 daybyday wrote:

I am so sorry.  I believe one of the best resources available to answer your questions is   www.brainhospice.com .  My thoughts are with you.

 

sorry to hear of your condition,a lot of us are going through the same thing ,but instead of putting the pressure on to the other patiants and caregivers it would be better to speak to your doctors .kind thoughts and a much better new year for you....

RE: Symptoms of last stages of GBM

by golferdawn on Wed Dec 31, 2008 12:00 AM

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 I think that you are a very mean person.  Doctors only give me generalities - I was hoping to find out from people who have gone through this what to expect and only if they wanted to reply - I don't understand your comment about putting pressure on patients.

On 12/31/2008 John Bham uk wrote:

 

On 12/30/2008 daybyday wrote:

I am so sorry.  I believe one of the best resources available to answer your questions is   www.brainhospice.com .  My thoughts are with you.

 

sorry to hear oIf your condition,a lot of us are going through the same thing ,but instead of putting the pressure on to the other patiants and caregivers it would be better to speak to your doctors .kind thoughts and a much better new year for you....

 

RE: Symptoms of last stages of GBM

by JulieUK on Thu Jan 01, 2009 12:00 AM

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Hi - I too highly recommend www.brainhospice.org - it's a wonderful site, that I discovered only by chance, set up by a lady who lost her own dad to brain cancer. It's extremely helpful and informative, and takes you through all the detailed stages as the patient reaches the end of their lives.

I'm afraid I agree with you that if this site, Cancer Compass, is to be the excellent site that it is, that we must ALL support one another in our queries. We ask questions here out of fear and desperation, and hope that others who have gone our path, but a little further ahead, will be able to shed light.

Most patients and caregivers - certainly me! - may well find that their 'time slots' with doctors is very brief (and expensive) and there are always more questions to ask than can be addressed during the consultation, or more occur afterwards. Sometimes, too, doctors are not the best people when it comes to the 'practicalities' of the disease. I, for example, found that my husband's wonderful nurses and hospice carers knew far, far more about 'what would happen' than the doctors, becuase it is the nurses that take the patients on that final journey. Our wonderful hospice nurse was with us at the end of my husband's all-too-curtailed life, and she was wonderful in explaining what was happening in his body, explaining how and why his breathing was changing, and holding his hand, as we held on to the rest of him (!) as he took his final breaths. Her help and support were invaluable. Death is strange and unknown to most of us, but hospice carers live with death as a close companon, and know the ways he takes those we love, and that knowledge helps and reassures both us, as caregivers, and the patients themselves.

Also, I would say this - we are ALL in the same boat here, fighting for our lives, and the lives of those we love. The battle is against Death, and keeping it at bay as long as possible, and making Death's arrival as painfree and peaceful as we can, when that time comes. I don't think anyone here would begrudge passing on any of the information they have gleaned on their own journeys.

I know, however, that before my husband died, I 'avoided' those queries that talked about end stage, because they frightened me, and that may be a very typical reaction. But, just as when you are first DX with cancer, even though (for me, I know, and perhaps others) cancer was a word that scared me so much I never, ever wanted to know about it or read about it, yet we have all had to 'face up' to cancer here - and then, very sadly, some of us have to face up to 'end stage' and what comes then.

So, in practical terms, I don't know whether this applies to primary brain cancer, but when my husband succumed to his secondary brain cancer, following unsuccessful radiation treatment, the first thing that happened was recurrance of his original symptoms (headaches, nerve tingling and numbness and visual auras), then fits/seizures, including two grand mals, and then, finally, he lost his appetite, felt nauseous (and was - throwing up green bile), could keep no food or fluids down, and then became increasingly sleepy.

He was put on high steroids (well, high for the UK, which has a max dose of l6 mg, unlike in the USA, where you dose far, far higher!), to keep the edema down, but they didn't work. He became increasingly immobile, and slept 90%, and then virtually 100% of the time. His breathing changed, became more shallow. He couldn't move his torso, or his head, and only his legs and arms with difficulty. His circulation started to fail, and he lost his ability to swallow, so all meds had to go in by injection because of fear of choking and inhalation.

At the last, his breathing became more laboured, and troubled, but not wheezing or breathless, his arms became mottled because his circulation was failing, and at the very last, though, his eyes were opening - we didn't know whether he could see us or not, but we talked to him, because hearing is the last sense to fail, telling him how much, how very much we loved him. Then, with the hospice nurse there - we were SO fortunate to have hospice care at home, so he died in his own bed, in his own home, with us all around him - he gave one breathy sigh, and then one more, and the nurse felt for his neck pulse, which she said was very, very faint, then held a mirror to his lips, and his breathing had stopped. It was very peaceful, very painfree.

It broke our hearts, and they will never mend, but we know he went peacefully, without pain or trauma, and for that I am very, very grateful, and he went with our words of love in his ears, and he took our love with im to the life beytond, where he is free of the cancer that so destroyed him.

And so, with all my best wishes, I hope that the end stage your dread so much will be as easy as my own poor husband's.

Take care, and God Bless, Julie.

RE: Symptoms of last stages of GBM

by utladyd3 on Thu Jan 01, 2009 12:00 AM

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On 12/30/2008 golferdawn wrote:

Please, could anyone please let me know what the typical symptoms are at the end with GBM?

Hidi there.  I wish I could give you an answer, but I have been trying to get the same information since May, 2008 and have yet to get an explanation from someone who has seen the final stages.  Keep me posted should you get a response from someone else, please.  Best of luck & KEEP YOUR FAITH.  GOD has a purpose for us all!!!

RE: Symptoms of last stages of GBM

by JulieUK on Fri Jan 02, 2009 12:00 AM

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Please do do check out www.brainhospice.com - it really is excellent, and has individual stories as well, which really helped me when my husband died just before Christmas.

As I have said to Dawn, certainly from my husband's experience, it does seem that one 'blessing' (so to speak) of brain tumours is that they shut down the body via the mode of increasing sleep and loss of consciousness, and in a manner much less painful and traumatic that other types of cancer, such as bone cancer.

Take care and God bless - Julie

RE: Symptoms of last stages of GBM

by heartbroke on Fri Jan 02, 2009 12:00 AM

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my husband symptoms were he suffered a seizure couldnt walk or talk,i had hospice and his family at my side. it helped but the pain im going thru is so overwhelming not only did i lose my husband in oct 2008 i also lost my father in nov.2008. can any one tell me how i can get thru this im in grief counseling but im still so lost!!!!! patricia

RE: Symptoms of last stages of GBM

by amberrn3 on Fri Jan 02, 2009 12:00 AM

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On 1/2/2009 heartbroke wrote:

my husband symptoms were he suffered a seizure couldnt walk or talk,i had hospice and his family at my side. it helped but the pain im going thru is so overwhelming not only did i lose my husband in oct 2008 i also lost my father in nov.2008. can any one tell me how i can get thru this im in grief counseling but im still so lost!!!!! patricia

I am so sorry to hear. That is alot for anyone to take in. All I can say is it will take time, lots of time and greiving. Remember the good times and turn to family and God.

RE: Symptoms of last stages of GBM

by utladyd3 on Sat Jan 03, 2009 12:00 AM

Quote | Reply

 

On 1/1/2009 JulieUK wrote:

Hi - I too highly recommend www.brainhospice.org - it's a wonderful site, that I discovered only by chance, set up by a lady who lost her own dad to brain cancer. It's extremely helpful and informative, and takes you through all the detailed stages as the patient reaches the end of their lives.

I'm afraid I agree with you that if this site, Cancer Compass, is to be the excellent site that it is, that we must ALL support one another in our queries. We ask questions here out of fear and desperation, and hope that others who have gone our path, but a little further ahead, will be able to shed light.

Most patients and caregivers - certainly me! - may well find that their 'time slots' with doctors is very brief (and expensive) and there are always more questions to ask than can be addressed during the consultation, or more occur afterwards. Sometimes, too, doctors are not the best people when it comes to the 'practicalities' of the disease. I, for example, found that my husband's wonderful nurses and hospice carers knew far, far more about 'what would happen' than the doctors, becuase it is the nurses that take the patients on that final journey. Our wonderful hospice nurse was with us at the end of my husband's all-too-curtailed life, and she was wonderful in explaining what was happening in his body, explaining how and why his breathing was changing, and holding his hand, as we held on to the rest of him (!) as he took his final breaths. Her help and support were invaluable. Death is strange and unknown to most of us, but hospice carers live with death as a close companon, and know the ways he takes those we love, and that knowledge helps and reassures both us, as caregivers, and the patients themselves.

Also, I would say this - we are ALL in the same boat here, fighting for our lives, and the lives of those we love. The battle is against Death, and keeping it at bay as long as possible, and making Death's arrival as painfree and peaceful as we can, when that time comes. I don't think anyone here would begrudge passing on any of the information they have gleaned on their own journeys.

I know, however, that before my husband died, I 'avoided' those queries that talked about end stage, because they frightened me, and that may be a very typical reaction. But, just as when you are first DX with cancer, even though (for me, I know, and perhaps others) cancer was a word that scared me so much I never, ever wanted to know about it or read about it, yet we have all had to 'face up' to cancer here - and then, very sadly, some of us have to face up to 'end stage' and what comes then.

So, in practical terms, I don't know whether this applies to primary brain cancer, but when my husband succumed to his secondary brain cancer, following unsuccessful radiation treatment, the first thing that happened was recurrance of his original symptoms (headaches, nerve tingling and numbness and visual auras), then fits/seizures, including two grand mals, and then, finally, he lost his appetite, felt nauseous (and was - throwing up green bile), could keep no food or fluids down, and then became increasingly sleepy.

He was put on high steroids (well, high for the UK, which has a max dose of l6 mg, unlike in the USA, where you dose far, far higher!), to keep the edema down, but they didn't work. He became increasingly immobile, and slept 90%, and then virtually 100% of the time. His breathing changed, became more shallow. He couldn't move his torso, or his head, and only his legs and arms with difficulty. His circulation started to fail, and he lost his ability to swallow, so all meds had to go in by injection because of fear of choking and inhalation.

At the last, his breathing became more laboured, and troubled, but not wheezing or breathless, his arms became mottled because his circulation was failing, and at the very last, though, his eyes were opening - we didn't know whether he could see us or not, but we talked to him, because hearing is the last sense to fail, telling him how much, how very much we loved him. Then, with the hospice nurse there - we were SO fortunate to have hospice care at home, so he died in his own bed, in his own home, with us all around him - he gave one breathy sigh, and then one more, and the nurse felt for his neck pulse, which she said was very, very faint, then held a mirror to his lips, and his breathing had stopped. It was very peaceful, very painfree.

It broke our hearts, and they will never mend, but we know he went peacefully, without pain or trauma, and for that I am very, very grateful, and he went with our words of love in his ears, and he took our love with im to the life beytond, where he is free of the cancer that so destroyed him.

And so, with all my best wishes, I hope that the end stage your dread so much will be as easy as my own poor husband's.

Take care, and God Bless, Julie.


 

Thank you so very much for your bravery and honesty in sharing your experience.  Although I know that his was secondary, at least I now have an idea of what my loved ones may have to endure as for myself, I am very much afraid but not so much for myself alone, but for my family so I want them to have an idea of what to expect to try to help prepare them as much as humanly possible, though I know you can never be prepared to watch a loved one endure such things or to let them go.  GOD Bless you and your family.

Denise

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