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Final stages of glioblastoma multiforme, both parents cancer

3 Aug 2016 11:32

I lost my father to cancer on 3rd June, he had a glioblastoma multiforme stage IV, not a lot is posted about the final stages of this Cancer. And I know people  ask this but not a lot written. My Dad was diagnosed with GBM on the 7th April 2016, his neurosurgeon advised he had 3-6months to live, oral chemo was offered but only gave hope that my dad would survive a month or few weeks longer. If you have a loved one with this cancer, I want you to know, it's not easy to watch. But for the most part, my dad had no idea what was going on, he recognised family, but would get very confused and agitated as to why he was in hospital. The last week of his life, he lost the ability to swallow food, move his body, talk and lost sight in his right eye. As horrible as it sounds and awful to watch, my Dad was not in pain. The silver lining of GBM, is that it very rarely causes pain, he began to sleep a lot. When he could no longer swallow his medication, my family decided to put him on a syringe driver of madazalam and morphine, he was in a comatose state, but at peace. He could hear people talking to him and would faintly smile at funny stories from the past. I'm not going to lie, it's horrible to witness, but the only silver lining that kept me going was, my dad had no idea what was going on, was mainly 'high' on drugs and most importantly, he was not in pain. I took just about all my being to get through his illness and death, the grief does get easier, I promise, but allow yourself to cry and grieve.

 

fast forward 8 weeks, my mum has been diagnosed with secondary bowel cancer. It's spread to her liver, we're currently awaiting the MDT meeting outcome. We have been told that surgery and chemo may keep her cancer 'under control' but may not necessarily cure it completely. The bowel cancer has most definitely been confirmed, however, on the ct scan, showed spots in her liver, we are waiting on a liver MRI. It feels a lot like deja vu, I'm finding it almost impossible to remain positive, I have faith that treatment will help, but I'm mentally not ready to do this again.

 

I don't feel like I can help myself get through this, but hopefully my post may help others.

 

for anyone who is living with cancer or has a loved one with Cancer, stay strong

Final stages of glioblastoma multiforme, both parents cancer

4 Aug 2016 19:08 in response to Angelab01

Firstly can I say how sorry I am that you were faced with not only your dad getting cancer and you losing him so quickly but then you are having to grieve and support your mum with her cancer. you are so strong.

My mum was diagnosed with the same as your dad in feb this year and was told 3 months without treatment. She's had radiotherapy and oral chemotherapy... but they had to stop the chemo when her platelets got low. She's just had an mri after no treatment since April 16th. I'd heard they get sleepy. ...and she has sleepy days and ok days.

Just not getting any info so that's hard to cope with.

When does your mum get results?

Anytime you need to talk I'm here. X

 

Final stages of glioblastoma multiforme, both parents cancer

6 Aug 2016 01:24 in response to Angelab01

I read your post and just wanted to offer my support. I can't believe that you have to go through this over again and so soon. Do you have any siblings or people you are able to talk to? I feel like I can't really give you any good advice, as nothing I say will probably make you feel better. I just wanted you to know that I hope you can get through this okay, and feel free to talk on here if you ever need anyone to listen Happy

Final stages of glioblastoma multiforme, both parents cancer

5 Feb 2017 07:54 in response to Angelab01
So sorry to hear your sad story. My older brother 60 has GBM and has been laying there for weeks paralysed but lucid . So hard to see such a clever man deplete so rapidly. He was diagnosed last June 2016 and had 6 weeks radiation and it didn't work and now has limited time left. But I have 2 86 year old parents to cope with their grief too. GBM is a truly disgusting cancer.

Final stages of glioblastoma multiforme, both parents cancer

26 Sep 2017 18:14 in response to Angelab01

Dear Angelab01, My 81 yo mother was diagnosed on September 13, 2017 with GBM and we have brought her home on hospice to spend her remaining days.  She has declined all treatment and is still somewhat alert and responsive. Your post has given me some insight on what to expect and I wanted to thank you sharing this.

Final stages of glioblastoma multiforme, both parents cancer

2 Dec 2017 01:40 in response to Angelab01

i was told my dad had a brain tumour in august 2017 and last week he passed away how does this happen so quickly im struggling to understand, im blanking it all out as its happened so fast i saw him in june and he was abit confused and reapeated himself alot but doctors put it down to dementia then when he was diognosed i guess it was to late i have dads funeral on wednesday 6th dec its going to hit me hard any help would be great just to chat, i hope your situation comes out good stay strong we all have to.

Final stages of glioblastoma multiforme, both parents cancer

2 Dec 2017 10:07 in response to laulies

Welcome to the forum Laulies although I'm sorry to hear your dad passed away last week and on behalf of all the team here at Cancer Chat I would like to offer you our condolences.

I noticed you were looking to chat to others so I just wanted to suggest starting a new discussion, maybe in our coping with loss section? It's just the member you're replying to hasn't been on in a while so there is a possibility you may not get a reply from them straight away.

We have many members on the forum that are grieving for a loved one at the moment so will know what you're going through and by starting a new discussion it will be easier for them to see your post and reply offering words of comfort and support.

Our thoughts are with you at this time.

Kind regards, 

Steph, Cancer Chat Moderator

Final stages of glioblastoma multiforme, both parents cancer

29 Jan 2018 23:33 in response to Moderator Steph
Hi There my Sister (48) was diagnosed with a GBM in September and she was rushed into emergency surgery in October. She has chemo and radiation theropy but had a scan three weeks ago and she has been told come back and spread across the lift and right side of the drain. She was then told she has 6-8 weeks to live , they are reducing her steroids weekly and I am not sure what to look out for re how she will decline or is it different for everyone

Final stages of glioblastoma multiforme, both parents cancer

4 Feb 2018 02:55 in response to nickpd10

I am so sorry to read about your sister she is so young. My Dad just passed away age 87yrs on Jan 6th 2018 from a temporal lobe glioblastoma which was diagnosed on 14th December 2017. It came out of nowhere and took him fast. He began sleeping a lot during the day and lost his speech. He had a mild headache at times but generally was not in pain. He was on steroids (Dexamethasone) to keep the brain swelling down and once he was unable to take this orally anymore he deteriorated very quickly (3-4 days). He had a syringe driver put up as he was very chesty and this helped to calm down the coughing. His was completely stress free and calm during his brief illness and his passing was very peaceful. I am not sure if it will be exactly the same for your sister but I hope she will have a peaceful time. Stay strong and make the most of the time you have left with her. Feel free to talk anytime.

Final stages of glioblastoma multiforme, both parents cancer

15 Feb 2018 20:34 in response to Rabbat
I appreciate all of y'all's stories and information. I am really struggling since my sister-in-law was diagnosed with stage 4 glioblastoma a few months ago, she is 30 years old. It's one of those things where I am in the medical field and want to know every bit of information I can but nothing I can find is comforting and I definitely don't want to discuss any of my issues on this with her or her husband. I try to be hopeful with that side of the family but then there's the logical part of me where I want to know realistically what all to expect so I can make sense of things. Any information of the final days or any hope you could give for her would be greatly appreciated. Thanks!

Final stages of glioblastoma multiforme, both parents cancer

16 Feb 2018 22:23 in response to jehowell91

Hi Jehowell and welcome to the forum.

I noticed you were looking for information on what to expect in the final days and hopefully our members will share their experiences with you but in the meantime I just wanted to show you some general information we have about this on our website. This can be a tough read so only go through it properly if you feel you are ready to do so or have someone with you.

I hope this helps and I wish you and your sister-in-law all the best at this difficult time.

Kind regards, 

Steph, Cancer Chat Moderator

Final stages of glioblastoma multiforme, both parents cancer

18 Feb 2018 01:54 in response to Rabbat

My dad has been in hospital since Dec 31st. At one point he could not eat, swallowing was a problem slept most of the day and could not talk. Dr. Said he believes he is in his last months of life. That was last week, they upped his steroids and now is back eating,talking, and walking with his walker. When he went in on dec he was same way and they gave him steroids and same thing back on his feet, but once they reduced the steroids he is back to bed and lifeless. It's so hard to watch. Dr. Also said he has lymphoma that is spreading. 

He was diagnosed aug. 2016 

Final stages of glioblastoma multiforme, both parents cancer

24 Mar 2018 13:10 in response to jehowell91
Hi My mum was diagnosed with GBM july 2014 aged 59. They said she would have 5 years maximum. She had surgery and was quite well after that. She took steroids and they helped a lot. She managed to do a lot of travelling, had radiotherapy (lost part of her hair) and was managing her symptoms, not a lot of pain, she managed to live pretty well for almost a year after that. She also had chemo but it didn't do anything it was just a bit of a waste of time in my opinion. A year after she was diagnosed she started to have seizures and her health deteriorated from there. In october 2015 she was still up and about and well, she walked 3 miles with us one day. In november 2015 she had a series of seizures and they took her into the hospice and told us that was the end. She woke up after a few days, she was unconscious for about 3 days. She came home after about a week and a half in the hospice but by now she was starting to have trouble walking and her ankles were swelling. She would sleep and eat a lot (because of the steroids) and she would also hallucinate colours and patterns. She was taking a lot of meds at this point (clonazepam for seizures, morphine for pain, steroids for swelling, she also took canabinoid oil) she went back in the hospice in january 2016 and was there about 2 weeks before she died 5 feb 2016. She was quite lucid in the hospital, she was conscious up to two days before she died. The hospice called us to let us know her death was imminent. It wasn't pretty i will be honest- she had the 'death rattle' where mucous builds up in the throat but she certainly was unconscious and didn't know about anything, I believe it was a painless and peaceful death. I searched so much for info because I wanted to know everything but every case is different, it depends on the age and health of the person, dont believe everything that you read. We expected her death but it still felt like a train hit us when she died. It was hard, it still is. But the 18 months she lived after her diagnosis were the happiest of my life, we laughed, cried, had wonderful conversations, travelled, spent time together. We just tried to make it the best time possible and it was.

Final stages of glioblastoma multiforme, both parents cancer

24 Mar 2018 22:21 in response to nickpd10
Hi there , I am new to the forum. I have had my neighbor pass away from this type of cancer , he was diagnosed in November ‘16 and my February ‘18 he pass away . The first thing they did was operation, then chimo and steroids. The first few months looked great the hebstarted to decline by summer , bit by bit started to talk with difficulty, the right hand stared to be hard to use it then right foot then left hand and left foot . By November he couldn’t walk anymore and by xmass couldn’t talk anymore. Is very sad , he wasn’t in pain but he lost a hhis ability to talk . The last weeks he had breathing difficulties ambulances was almost every week 2/4 times and hospital then back home . He didn’t recover , last time he went to hospital for few days and then he pass away suddenly his heart just stopped when his family thought was sleeping ... It is very hard but is important to talk with as much as you can any wishes any thing he /she may want to say .... My neighbour didn’t had the chance to ask her husband anything else she didn’t though will dies so soon . Test was looking good each time , docs didn’t prepare her for the worst , she had an massive shock when he pass away . Is important to spend and talk as you don’t know when th speech will get difficult to communicate and it is very painful to wach . She is strong but she wish could ask him something.... He was aware and fine but with low blood pressure, sh didn’t had a thought he will die .... Is sad .. I wish everyone to be strong !!!!

Final stages of glioblastoma multiforme, both parents cancer

1 May 2018 13:28 in response to lp
Hi, My daughter has had a grade 4 glioblastoma removed and waiting for her treatment to start. She is 48 and wants to travel, was your mother able to fly to other countries? How long after treatment was she well enough to go on holiday? How was she whilst having her treatment,? My daughter lives an hour drive from me and I would really like to have her live closer. Do you think based on your mum that my daughter will be well enough to work after her treatment? Sorry for pounding you with questions but I'm looking to do whatever I can to make her life easier and more comfortable. xx