Here's a working link for brain hospice timeline

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RE: Here's a working link for brain hospice timeline

by Terraserene on Thu Nov 09, 2017 11:55 PM

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On Nov 09, 2017 11:08 PM BamaDave wrote:

Prayers to all for your continued caregiving and experiences.  My Dad did pass away on April 30th after a long decline. The timeline did give me a good idea about what to expect, although not everything matched.  He was strong physically before the end, and he lived almost 11 days with no fluids before he passed away.  He slept almost that entire time with only rare moments of being awake. Everyone's journey with this disease is different.  In the end, I think we made the best choices for Dad and his quality of life, and he never complained of any pain all the way to the end.  

Thank you for your experiance. We are in the midst of this. Mine too has always been strong physically.

RE: Here's a working link for brain hospice timeline

by BamaDave on Fri Nov 10, 2017 05:18 PM

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On Nov 10, 2017 5:03 PM anthonygjolaj wrote:

Take us through the beginning, when was he diagnosed, how long was he given to live.  Did he have surgey, then he went straight to the Oncologist?

Anthony, I'm not sure whether you are asking me... but briefly here's how my Dad's illness progressed.  He was diagnosed in July 2015 after experiencing facial sagging.  He had a fairly large tumor on his right temporal and parietal lobes.  The tumor was resected, and then he did the standard temodar/radiation treatments.  By December 2015, he had regrowth.  He had decent quality of life through early 2016.  In April 2016, a second resection was done, and most of his right temporal lobe was removed also.  He recovered from the second surgery quickly but mentally declined.  He began hallucinating, thought his house had been moved to a new location, thought the family had joined a cult, etc.  We actually started him on hospice in July 2016, which turned out to be a bad decision.  They were a drug happy hospice program and had my Dad so overmedicated on sedatives that he almost died.  My Mom figured it out in early September 2016 and discontinued hospice.  He bounced back again, although he still had the mental problems.  In February 2017, he started a pretty rapid physical decline.  By late March 2017, he was falling a lot.  In mid April 2017 he was hospitalized because he couldn't eat or swallow and couldn't speak.  This was mainly due to build-up of fluid in his brain.  The doctors offered to do surgery and place a shunt that would have reduced the fluid pressure, but we decided not to put him through that when it would just return him to his previous poor quality of life.  We brought him home from the hospital and started hospice (despite my Mom's reluctance...she is now very soured on hospice programs, but the new one was very helpful).  We then had an almost 11 day vigil at his bedside, which was mostly awful but also had some good moments when we were able to speak to him.  He didn't take any food or water, and interestingly the dehydration reduced the fluid in his brain enough to improve his consciousness for a few days.  He mostly slept and never complained of any pain, even though we asked every chance we could.  He started breathing extremely deeply and quickly on April 29th, and then this faded out mercifully on the morning of April 30th.  I was the only one with him when he finally passed, which was hard on some of the rest of the family after the long bedside vigil. 

In the end, I think we made mostly good decisions with Dad's care.  In hindsight, I don't think the second surgery was worth it.  He would've been better off enjoying the quality of life he had, and if he had died during the summer of 2016 rather that spring 2017, I think it would have been better for him and my Mom.  His last year really wasn't that great, but hindsight is always 20/20.  We did the best we could.  I miss him but am very relieved he isn't suffering the indignity of having to be bathed, diaper changed, and embarrassed by his poor mental function.

Prayers, again, for all!

RE: Here's a working link for brain hospice timeline

by Terraserene on Fri Nov 10, 2017 11:30 PM

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On Nov 10, 2017 5:18 PM BamaDave wrote:

On Nov 10, 2017 5:03 PM anthonygjolaj wrote:

Take us through the beginning, when was he diagnosed, how long was he given to live.  Did he have surgey, then he went straight to the Oncologist?

Anthony, I'm not sure whether you are asking me... but briefly here's how my Dad's illness progressed.  He was diagnosed in July 2015 after experiencing facial sagging.  He had a fairly large tumor on his right temporal and parietal lobes.  The tumor was resected, and then he did the standard temodar/radiation treatments.  By December 2015, he had regrowth.  He had decent quality of life through early 2016.  In April 2016, a second resection was done, and most of his right temporal lobe was removed also.  He recovered from the second surgery quickly but mentally declined.  He began hallucinating, thought his house had been moved to a new location, thought the family had joined a cult, etc.  We actually started him on hospice in July 2016, which turned out to be a bad decision.  They were a drug happy hospice program and had my Dad so overmedicated on sedatives that he almost died.  My Mom figured it out in early September 2016 and discontinued hospice.  He bounced back again, although he still had the mental problems.  In February 2017, he started a pretty rapid physical decline.  By late March 2017, he was falling a lot.  In mid April 2017 he was hospitalized because he couldn't eat or swallow and couldn't speak.  This was mainly due to build-up of fluid in his brain.  The doctors offered to do surgery and place a shunt that would have reduced the fluid pressure, but we decided not to put him through that when it would just return him to his previous poor quality of life.  We brought him home from the hospital and started hospice (despite my Mom's reluctance...she is now very soured on hospice programs, but the new one was very helpful).  We then had an almost 11 day vigil at his bedside, which was mostly awful but also had some good moments when we were able to speak to him.  He didn't take any food or water, and interestingly the dehydration reduced the fluid in his brain enough to improve his consciousness for a few days.  He mostly slept and never complained of any pain, even though we asked every chance we could.  He started breathing extremely deeply and quickly on April 29th, and then this faded out mercifully on the morning of April 30th.  I was the only one with him when he finally passed, which was hard on some of the rest of the family after the long bedside vigil. 

In the end, I think we made mostly good decisions with Dad's care.  In hindsight, I don't think the second surgery was worth it.  He would've been better off enjoying the quality of life he had, and if he had died during the summer of 2016 rather that spring 2017, I think it would have been better for him and my Mom.  His last year really wasn't that great, but hindsight is always 20/20.  We did the best we could.  I miss him but am very relieved he isn't suffering the indignity of having to be bathed, diaper changed, and embarrassed by his poor mental function.

Prayers, again, for all!

Your father was blessed to have such a loving family. He’s no longer suffering and will always be remembered positively by your family & by God. Thank you, that took a lot to share. Many hugs coming your way. Raven Xxooxx

RE: Here's a working link for brain hospice timeline

by atlambs on Fri May 03, 2019 08:42 PM

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Hi Dave -

Thank you SO much for posting this timeline. This has been so helpful for me over the last couple of weeks. As everyone on here says, all GBM patients have different journeys. I will now like to share mine:

In August 2014, my FIL was found unconscious outside. He was taken to the ER, a CT was done... everything checked out normal and the doctors said maybe he was dehydrated or overheated. Honestly, that never made sense to us, but we had nothing else to go of off..... Fast foward to November 2014, where he began to have speech difficulties. After an MRI, we were learn he had a massive tumor on the left side of his brain. We would then learn he most likely had a grand mal seizure back in August, which was onset of the tumor. Diganosed with GBM after a full resection of the tumor. He did the standard treatment and did not have a recurrence until September 2017. Recurrence was in the same area and a successful total resection yet again. Because he did not have recurrence during his chemo treatment, his doctor put him on the same chemo. He had another recurrence found in July of 2018. The doctor encouraged a clinical trial which took months to get into. They were going to inject a modified herpes virus (immunotherapy) into his brain. It wasn't until October 2, 2018 that he was able to receive the immunotherapy. The months leading up to that were hard as his symptoms intensified - speech troubles and difficulty with numbness on his right side and sometimes minor seizures. The day of the procedure, he unfortunately suffered a brain bleed and was unable to participate in the clinical trial. A total punch to the gut, as we waited all this time for him to participate. He walked in strong and come out worse off than ever. The worst of all, he still had a large tumor in his brain. After two months of intense rehab, he came home and began a 1/2 dose of Avastin every two weeks. In January, the strength and speech improvement he gained in rehab were all lost and he had to stop PT, OT, and speech therapy because he was not meeting his goals. The Avastin dose was then increased to the standard dose. Tumor always shown stable on scans. He also began lomustine chemo at some point in 2019, but not sure exactly what month. At the end of March 2019, his scan showed stable with an actual decrease of edema in the brain. A slightly improved scan in comparison to the one at the end beginning of February. Not even 5 days after that scan, he began having frequent, mild seizures. The doctor did not give us an explanation as to why. He was on 4 seizure medications and still having seziures - not to mention sleeping ALL DAY. Halfway through April, he had another scan. Still no difference from the one 4 weeks earlier. However, my FIL was less interested in his wheelchair transfers and his hospital bed was moved downstairs. Because he was so sedated at the beginning of April, he did not attend his avastin treatment. He was supposed to have an Avastin treatment on May 1, and again, did not attend due to inability to do transfers and being bedbound. We decided to formally end his treatment and bring in hospice.

These last few weeks have been completely agonizing. The timeline provided has been very helpful - though I am unable to consider any of the speech portions since he really lost his speech due to a brain bleed back in October. However, he has certainly met basically every single symtpom from Week 2-3, and most of Week 1-2 and 5-7 days. He also experiences a lot of random laughing and crying. He is so very confused, and cannot understand back and forth conversation. He can somewhat answer yes/no questions. Eating a few bites here and there and not drinking very much. The suffering is heart wrenching. My FIL is now a shell of himself. This disease is so horrendous and devastating to watch. My heart is with all of you who have had to watch loved ones suffer. 

RE: Here's a working link for brain hospice timeline

by atlambs on Mon May 13, 2019 12:23 AM

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Just providing another update for any of those who may be following. 

First, I did not update what happened in October when he suffered the brain bleed - he lost ability to move his right side and he lost his speech. 

Anyway, it has been over a week since I last wrote in here. He has good days and bad days. On the good days, I find myself thinking we could have him here for several more weeks. On the bad days, I find myself wondering if this is the last time I will see him. It is hard. 

With reference to the timeline, I have seen a lot more of the 5-7 day range. He will wake up and remove the covers and pull his left knee up as if he needs to leave the house. It is usually very sudden. He acts like he has somewhere to be, has lost something, or is late... I can't quite describe it. Last week he was picking at the covers like small objects were on it, but that has kinda stopped. Will express urgency to pee and then when we get the hand held urinal to him he looks at us like he has no clue why we have it and does not urinate. He lost his speech back in October, but still babbles. He will babble, but gives up because we all shrug not having a clue what he wants to say. He also says "oh baby" multiple times in a row, with his eyes closed and is not speaking to anyone..... He still has a decent appetite. Only preferred foods, such as dessert items. Yogurt, pudding, coffee-type breads, sometimes a PBJ (will not eat crusts). Usually just a few bites of any of the items. Soft foods and foods he does not have to chew too much. Sometimes he will act like he wants to eat, but falls asleep before we can bring him the yogurt or pudding. Still taking pill medication, but definitely tries to refuse... Also, sometimes falls asleep and messes up medication cycle. Has a terrible wet cough. Has had the cough over a month. Seems lately to have a more difficult time clearing throat. Hates linen changes, vitals are good, nurses say he looks good.

RE: Here's a working link for brain hospice timeline

by Joylu on Sat May 25, 2019 06:32 AM

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Hi Atlambs,

I just had to write you and say I really feel for you. I am going through a very similar situation as you are- with my Dad, once he refused an Avastin treatment he has declined drastically. I can't carry on conversations with him, he's under hospice care as well, and he stays in a hospital bed all day in our house, barely eats or drinks its so very sad. He has no feeling on the right side of his body and puts his left knee up too almost like he's getting ready to jump out of bed. I'm not sure what to think anymore. I just want to let you know you are not alone and our current timelines are very close. Take care.

RE: Here's a working link for brain hospice timeline

by atlambs on Sat May 25, 2019 12:58 PM

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Hi Joylu, I am so very sorry to hear about your dad. You are right, it does sound like we are on very similar timelines. I know what we are both experiencing is terribly sad, and some of the hardest days. My thoughts are with you and your family.

RE: Here's a working link for brain hospice timeline

by atlambs on Mon Jun 03, 2019 12:12 PM

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My FIL has been in hospice care for a month now. Honestly, things are not much different than they have been. I can’t believe the slow decline. My FIL is incontinent now. He also is not having regular BMs, and when he does have one it is because a suppository was administered. His legs have atrophied tremendously. It’s very sad. He still has a lot of his wits about him. Lots of his quirks are still present, even though he is unable to communicate. We are crushing his medication, because he will spit his pills out. He no longer has the wet cough. He’s very uncomfortable in linen changes, and is unable to help like he used to do. His mouth slackens in sleep, and his right eye doesn’t close all the way. That’s the side he had the brain bleed on back in October, but his eye has always closed until now. Not sure what that is about. Anyway, this is a slow and agonizing process. My thoughts are with everyone who is going through this terrible disease. The happiest I am is when I am with my FIL, he is in good spirits amidst it all.

RE: Here's a working link for brain hospice timeline

by atlambs on Mon Jun 24, 2019 03:11 AM

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My FIL passed on June 21. The timeline was very accurate and helpful for final hours, and final few days. My prayers to all who are still battling this vicious disease.
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