Glioblastoma

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Glioblastoma

by Lollylegs on Sun Jun 24, 2018 03:22 AM

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Hi, I’m new to this group, my 58 year old cousin has been diagnosed approximately 4 months ago with a GBM, he has had 6 weeks of treatment but the brain is swollen and he has blood clots in his lungs. He is paralysed down his left side. He has had a good appetite and that has declined a little recently, he has become confused sometimes. My question is, what would expected life expectancy be now as he’s taken to sleeping most of the time, he is now home and bedridden, he can come out with the aid of a lifter but seems to just be content with sleeping or laying in his bed. When he wakes he doesn’t ask to be sat up or anything, he just seems to stay the way he is unless we intervene. I’m not his primary care giver and it’s so hard to watch this situation. As mentioned, now he sleeps the majority of the time, can anyone help me with what’s going to happen now or what life expectancy could be? I know everyone is different and I’ve never been through this before with a loved one and I just don’t want him to be alone at the end so I’m trying to find out as much as I can so I can prepare if that’s at all possible and I want to be with him. Any advise would be appreciated. Thank you

RE: Glioblastoma

by mutt2679 on Thu Jun 28, 2018 03:33 PM

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Sorry to hear about your cousin. My father was diagnosed with it in Januaray 2017. Our doctors told us with treatment we a year and a half to two years on average. Were they able to get any of it with surgery? Is he on any steriods? My father didn't have issues with blood clots. He has been like your cousin though, just content to stay the way he is unless we intervene for most of that time. But he's getting harder and harder to move around and care for every day. Steriods helped my dad with the brain swelling. Chemo wasn't working at all for him either, so we switched to Avastin after some time. Avastin also helps with the swelling, which seemed to help him. 

In my research, I found a symptom timeline that is supposed to be fairly accurate as far as the actual symptoms go. I'm not so sure they have the times correct though, I'm not sure there's anyway to really guess that. Everyone is going to vary, since everyone has different treament and reactions to the treatment. My dad has had a lot of these symptoms for months, but for me it was some what of a comfort (as hard as it is to read) just to kind of know what to expect moving forward with what he could start (or stop) doing. 

My experience with my father, He's getting to the point where he sleeps most the day and night. There are times still where he kind of pulls himself out of it. He seems to do it when people he's not use to come over and try interacting with him. New environment kind of thing I guess? There's a lot of confusion I see with him. If there's any kind of distraction (TV, other people, etc) he mixes up sentences and doesn't make much sense. He really struggles to communicate these days. It's pretty hard seeing that he wants to say something, but can't get his brain and body to respond right. My sister is really good at getting him to interact. She's really patient and just kind of rambles to him. Eventually she says something that will spark him to start talking, and she just tries to keep him going that way. A lot of times, the extra sleep helps too. He's more interactive once he's had a really good uninterupted sleep.

Anyways, Here's the link. Hopefully it helps:

https://web.archive.org/web/20160324070425/http://www.brainh

Hopeing for the best for you and your cousin. It's the most difficult thing I've watched.

RE: Glioblastoma

by ljayr on Thu Jun 28, 2018 10:30 PM

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Hi,

I sorry for what you are all going through.  I looked at that symptom timeline and it probably is quite accurate.  My brother died from sinus cancer last year.  It was stage 4 when he was diagnosed and the tumor (the size of an apple) was in his sinus cavity and brain.  He was diagnosed in August of 2016 and passed away February 2, 2017.  The 3-6 week symptom time line was quite accurate, except for him I would say instead of 3-6 weeks, that would've been 5-6 weeks.  He had alot of physical decline from around 4 weeks before his death.  Lost vision in one eye, fell alot, slept/napped frequently and just started to be more detached with his communication, etc.  Two weeks before his death, my SIL put him in hospice care at the local nursing home because she couldn't care for him anymore.  He did fairly well the first couple of days as far as eating, etc. but then his brain quit telling him to chew/swallow, and the cancer caused his eyes to swell, so they were mostly shut.  However, when I would talk to him, he would answer intelligibly and seemed to know what was going on when we he was awake.  He was bedridden for most of the last week.  On Monday of the week he died (he died on Thursday), his liquid outtake started decreasing and quit, he was basically down to 1-3 word responses.  My SIL had the liquid morphine started because she thought he may be in pain, or didn't want him in pain.  On Wedneday evening, I was able to have about an hour alone with him and he seemed responsive (he would wave his hand to acknowledge or make sounds in his throat, etc.)  I don't know if that was coincidental or if that really was him.  I like to think that it was really him, because I was telling him how much I loved him, how proud of him I was, I retold him his life story and mentioned all the fun things he did, awards he won, special people/pets he knew, and I did ask him if he knew he was very sick and if he had made peace with Jesus.  Then, I started to talk about him dying and how much I would miss him.  Of course, I was crying the whole time.  I told him to give our mom a big hug from me when he would get to heaven and see her and to tell her about the new family members and other stuff about the family.  I kissed him and just sat with him quite awhile holding his hand, until some other family members came to visit him.  The next day around 2 in the afternoon, he started shutting down.  By 6:45 that night, he was gone.  Thankfully, very peacefully.  He had developed a slight fever that morning, and appeared to be almost comatose.  We all said our goodbyes to him and stayed around his bed until he passed.  One of my main concerns was that he would go into seizures towards the end of his life.  I don't know if he was given medication for that or not, or if the liquid morphine took care of that.  Whatever the reason, I was so very thankful that he didn't have to go through that upon death.  It was an answer to prayer.  Well, that is probably way more information than you want to know.  I'm just telling you this, because when he was sick, I couldn't find nothing to help me with a guideline, etc.  I did post about his final stages in a post called SNUC final stages.  I think it was under the Brain Cancer area, but I can never pull it up.  Perhaps Cancer Compass didn't feel it was appropriate for this message board.  If so, I understand.  If you have any questions, I would be happy to answer them the best I can.  Best wishes to both of you with your family members who are sick.  Hang in there...          

RE: Glioblastoma

by Lollylegs on Thu Jun 28, 2018 10:30 PM

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Hi, Thank you so much for your reply and I’m so sorry to hear about your dad. This is such a viscous disease. My cousin is paralysed down his left side so no longer walks about, all his time is spent in bed, he will just be laying down unless someone tells him to sit up with the help of the hospital bed he on, he’s unable to move at all except for turning his head or moving his right arm. The drs were unable to operate because of the position of the tumour so he had 6 weeks of treatment chemo and radiation, then another MRI and the Dr told him it’s terminal and to go home, there is nothing more that can be done for him. When I saw him 2 days ago he now has pain in the back of his head that he hasn’t had before which is worrying as he was pain free apart from aching from his paralysed side. He speaks but usually only gives 1 word answers but occasionally when I’m with him I can get a short sentence out of hi but he’s very weak and slow with his speaking. He sleeps a lot now day and night and he wasn’t doing that 2 weeks ago. He has a blood thinner injection once a day for the blood clots in his lungs, it’s all just so hard to watch. Thank you for your reply and I shall look at the link you sent. I appreciate your time and once again I’m very sorry to hear about your dad. Thank you

RE: Glioblastoma

by mutt2679 on Fri Jun 29, 2018 03:23 PM

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It really is a horrible disease. It takes a lot out of everyone going through it, family included. Especially when he was only diagnosed 4 months ago. Symptom wise, it sounds like your cousin at the same spot as my father. Is he on morphine or anything like that for the pain? That really helps my dad with his head aches. He gets really bad cluster headaches behind his eyes, but liquid morphine kicks it really quick. We also got him some plush hot/cold eye mask on amazon that seem to help some too. 

For us right now it's all about making him as comfortable as possible. Our oncologist told us the 1 and only humane thing about a GBM is most of the time the passing is peaceful. he'll basically go into a coma and pass in his sleep. Hard to hear, but It's been a comfort to me. 

Really sorry he's going through it. Sounds like you are a great support for him. Good luck with everything. Feel free to hit me up if you need to talk or vent or anything.  

RE: Glioblastoma

by mutt2679 on Fri Jun 29, 2018 03:40 PM

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ljayr, Thank you for for sharing your story. I've spent hours scouring the internet looking into what to expect. Not that everyone is the same, but for me having as much info as possible is always better.

So sorry about your brother. I'm glad to hear his passing was peaceful. Most of the cases I've read have been that way, which I'm really grateful for. 

My father has been having seizures pretty regularily (every 8-9 days), but from what I read and talked to the doctors about, they should stop before he goes into a coma. He's on two different kinds of meds for that, but they still don't stop them completely. It's pretty terrifying when they happen. Especially since there isn't much you can do. 

RE: Glioblastoma

by ljayr on Fri Jun 29, 2018 05:48 PM

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Hi mutt2679,

You are welcome for the information.  I was happy to share it since I know what you are feeling..."what will the end be like?"  I'm sorry about the seizures your father is having.  The doctors should be able to control those.  What type of seizures is he having?  Grand mal or zone out or something else?  As I look back on my brothers' life, I know realize he had something going on for a long time, but it was a slow and gradual change.  And, a person never is looking for a brain tumor/cancer.  We thought he had a pinched nerve in his neck or just really bad sinus infections, never a tumor.  And I did not know that seizures can also be "zone out".  I always thought a seizure was a grand mal or the type you see with epilepsy.  For years, my brother would zone out for 10-20 seconds...once in a while longer.  We would be talking to him in person or on the phone, and all of a sudden he would stop mid-sentence.  If I was on the phone with him, I would think we got cut off.  Then I would say..."are you there yet?", and he would answer and continue the conversation we were having like nothing happened.  It was so odd, but again...who suspects a brain tumor???  And, I think he got used to covering up his zone out's.  One time I asked him how long he had been having them, and he said, "all his life".  Wow.  So that leads me to believe that he probably had a tumor growing for many years, and that it turned into the rare, aggressive sinus cancer (SNUC) that he was diagnosed when we took him by ambulance to the hospital.  He never liked doctors/hospitals, so he rarely went.  If he had, I'm sure this would've been detected, and perhaps he would be with us today.  But, back to your father, the one thing I was grateful for was that if anyone has to die from cancer, brain cancer is the best cancer to get.  The patient just sleeps more and more, until they sleep away.  Has your doctor been able to tell you how much time he thinks your father has left?  After my brothers' last chemo, he had about one good month, before the cancer started regrowing.  Then the sinus congestion and pressure, draining, itchy eyes all started up again.  The doctor said he had 2-3 months from the last chemo treatment.  He was right on.  I was thankful he was good enough to come to family Christmas 2016, and we took family pictures that day.  I'm so thankful we did, because three weeks later, he entered hospice.  We have wonderful memories of our last Christmas with him, he tried so hard to be "normal" and "healthy" for us, but one look at him revelealed a very sick man.  Poor guy.  He never wanted to end up in a nursing home, but that was where he did his hospice.  The same nursing home where our 91-year old dad resided.  So, dad got to be by his side when he, his youngest child, passed.  Broke dad's heart and in August he died.  It is extremely hard to lose someone to cancer, and it is just as hard to lose a sibling.  Never in my life did I envision my youngest brother dying in a room four doors down from my dad in the same nursing home.  It is good we don't know what is ahead of us.  I hope alot of family is visiting your father and telling them how much they love him.  And, giving you a break.  Bless your heart for all the caregiving you are doing...you will never regret it.  Never.        

RE: Glioblastoma

by Lollylegs on Sat Jun 30, 2018 01:03 AM

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Hi, Thank you for your reply again, I haven’t had a message from anyone else and I appreciate your messages more than I can say. I did look on the timeline you sent me the link from. Form what I read my cousin had weeks or days rather than any longer. As he’s bedridden because of being paralysed obviously some of it didn’t apply with mobility etc but it was a help with other symptoms. He isn’t on and morphine as he hasn’t really had much pain which was a blessing but he now has started getting pain in the back of his head, higher up and he has a heat bag on it and is able to have Endone if he wants them which he has sometimes but not regular. It was a comfort when I read your message and you said that many Glioblastoma patients pass in their sleep, it’s what I was praying for which sounds horrid but what do we do. I certainly don’t want to see him in pain. His appetite wa really good but in the last 2 weeks it’s noticeably dropped off but he will still eat a cake in record time. I shall see him again Tuesday. As he’s home with his wife and son I only see him twice a week as I don’t want to intrude although I know I’m always welcome. I’ve told my cousin anytime you want me, day or night, just asyour wife to call me and I’ve asked his wife, if he deteriorates quite quickly would you call me and she said she would. Frankly I wish I was looking after him so I could be with him 24/7 but that’s not possible. He seems to sleep night and day but has his awake times which is good as I want him to know I’m there. I sit with him while he’s asleep and rub his shoulder and he woke Tuesday and said, when I feel that on my shoulder I know your here, bless his heart. I will continue my 2 visits per week but each time I leave I wonder if I will see him again, I burst into tears every time I leave as soon as I get to my car, I wish you all the best with your dad and I commend you for caring for him so well. I too comb the Internet for advice and answers night and day but it’s never good what I read, I guess it’s not going to be now is it. I send love and positive thoughts to you and your dear dad

RE: Glioblastoma

by mutt2679 on Sun Jul 01, 2018 04:56 AM

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He has all the different kinds of siezures. We weren't aware of what zone out siezures were until a few months ago. We've had that same experience where you're talking to him and he just blanks out. Looking back, it was like it was for you, It's easy to see when he was having them in hind sight. His Grand mal siezures were pretty far and in between until it got toward the end of his treatment, then it they've been coming pretty regular. He is on Kepra and some other medication to try and help control it. He also has something that we give him during the siezure to stop it and stop any ones that happen shortly after. He also has focus siezures, where he's not unconcious, but just 1 or 2 limbs goes into the muscle spasms. I didn't know that was a thing until all of this either. 


It's crazy the different symptoms. We weren't thinking of a tumor either. With my dad it was a personallity change and his judgement went out the window. He tried getting the house appraised 4 times in a few months, buying expensive crap from ads on face book and tv commercials.... just really odd things. None of us thought of a tumor either. His primary physician diagnosed him with depression at first, and then a week later he decided to do an MRI. It's so crazy. 

Our doctors said he'll have about 2-3 months after we stopped treatment. That was about a month and a half ago. Feels like a lifetime ago though. Right now it seems like every day he gets a little worse.

That is fantastic he was around with family at christmas. This has definitely got all of my family closer. That's heart breaking dad and son where in the same nursing home. 

RE: Glioblastoma

by mutt2679 on Sun Jul 01, 2018 05:22 AM

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I know first hand that it doesn't help, but I'm sorry your cousin is where he's at. From your post I was thinking he was some where around there. It's pretty close to where I think my dad is at as well. I have read that sometimes the time periods are extended (or shrunk) for different patients, but that the symptom groups are pretty accurate. That's really rough he was only diagnosed with it 4 months ago too. We're at a year and a half with my dad. This cancer is not fair at all...

Seeing them in pain is one of the worst things I think. I hope he's able to get some relief from it with the endone. It's the same with my dad too, he's not on the pain killers regularly, just when it's needed. He hasn't really taken many drugs through his life, so just a little bit knocks my dad out and makes him a bit loopy, but you can tell the pain goes away. 

It was a comfort too me when I realized he would more than likely pass in his sleep. It's hard to think about it happening any other way. My fathers appetite has been going down as well. It's hard to see, my family are big eaters. I'm glad your cousin still is enjoying cake. :) 

I'm sure his wife and family are grateful for you. My family doesn't know what it needs while we go through this, but It's always a comfort knowing people are willing to be on call. You are a champ for going above and beyond for your cousin, and going the extra mile with research. I feel for you my friend. I wish I had words that help fix the actual problem. It's so painful to watch someone go through it. And thinking about the people left behind too is rough. I hope the phone call doesn't come soon for you. Bless you and your cousin, and his family. 

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