Glioblastoma and what to expect from this deadly disease

Welcome back! In this video, we're going to talk about Glioblastoma, a deadly disease that can affect anyone. We're going to cover what glioblastoma and, what to expect from the disease at the End of Life in Hospice

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#hospice #glioblastoma #hospicenursejulie

[Leezl]

My poor 18 yr old son, Kenneth, is dying from this now. He's supposed to be in baking school, but instead he's in hospice, paralyzed on his left side. He can't sit up. He used to play guitar and write songs ...he was a wonderful painter and baker. Now, he can't get out of bed.

I used to pray that God would heal him. Now, I pray ....I beg God for as little suffering as possible. He's already suffered so much.

Thank you for your videos.

[chrislzes]

Thank you for covering GBM! I am 38 and was diagnosed in 2019. I am currently on palliative care.

[jeremystull]

I lost my beautiful 31 year old wife on May 26th, 2022 to this horrible cancer. We were high school sweethearts since the age of 16. From first symptom to passing was only 69 days. It is the most horrible 69 days on earth and I suffer from mega PTSD from witnessing the absolute rapid decline and change she went through. I will forever miss her and my life is just completely different since her death. I don't wish this upon the world's worst enemies whether a patient or a spouse/caregiver.

[dekay]

My husband was diagnosed with GBM in May 2022. He was 63. He did standard of care and a clinical trial. He has been wearing a device called Optune for almost a year already. He still works full time, hikes and travels. Keeping my fingers crossed that this will continue for as long as possible and until new treatments come out. The moment he was diagnosed he said a wave of peace came over him telling him he will be okay. 🌷🤞

[martusia]

My mom she’s 63 was diagnosed with glioblastoma 9 years ago she’s still alive and they us that she won’t live pass 6 months . We caught it early so she started radiation therapy then she recently finished chemotherapy and is stable . I’m very grateful that I still have her at home and by looking at her you can’t tell that she has cancer . I’m so blessed because I don’t know what I would do without her .

[jennifermorales]

I agree with you 100%. My son died on Christmas Day from glioblastoma and it was horrible and agonizing. The one thing I would say is that the family may need to be very aggressive in their requests to hospice. My son was in hospice for 14 months and at the end there was no controlling the pain and not just the headaches but full body pain from nerves being pinched from the tumors. They tried to sedate him and it did not work . He was conscious til his last breath and I could not have made it through it if it were not for you and your videos. THANK YOU so much!! My son could not talk at the end but through what I learned from your videos I was able to understand what he needed. God bless!!!

[khammers]

Mother in law diagnosed January this year. Had it removed they gave her 2-4 months and she declined treatment and went on hospice immediately. She is about to celebrate her 75th bday tomorrow. She is declining but still with us and capable of talking and being herself. Hospice is such a blessing.

[kikiann]

My son died at 32 with this horrific disease. It took doctors 6 months to diagnose him. It ended up it wasn’t operable. His oncologist was wonderful. He lived 2 years with it. He went into remission for 2 months. Suddenly it started up again and he passed 2 months later. Is now resides in Heaven and is completely healed. By, the way his hospice nurse was fantastic. He was such a help and taught me so much. So thank you hospice nurses.

[brendanunley]

My cousin, an RN, had glioblastoma. It required a very difficult and lengthy surgery because of the location of the tumor. After surgery she was able to return to work half time in six months. She had a second surgery. She has lived life to the fullest for seven years and continues to fulfill things on her bucket list.

[karencristobal]

1984 my 48 year old dad had this. From being in the prime of his life and playing competitive tennis to a wheelchair in a day and then dead in 5 months.

I’m intrigued that there doesn’t seem to have been any movement in combating this illness in 40 years. Same prognosis today as in ‘84.

RIP dad.

[rachels.]

My mother was a perfectly healthy, active person back in 1999 when she was diagnosed with glioblastoma at age 39. From the day she experienced her first symptom to being buried was just 6 weeks. She never even made it to chemo or radiation - it just ravaged her brain and destroyed her in seemingly the blink of an eye. My baby sister was just 2 years old when the tumor took our Mom. Glio is a hideous & cruel monster that does not discriminate among its victims. I’m always amazed at those who have managed to survive glio for any substantial length of time - you have no idea how fortunate you are!

As a side note, I worked in a hospice from 2008-2015 and learned so much. It was the best job I ever had - the environment was so comforting. I really respect the work that hospice nurses and staff do - you are much appreciated!

[maharet]

My niece just died from this in October. She lived with it for 16 mo's. It was incredibly hard to watch her lose speech, walking, forming thoughts... the whole thing. She was just 41. RIP Katie 💔

[christinesroka-williams]

My nephew Ryan was diagnosed June, 2015. ( I think he was 12 or 13) He started with headaches & blurry vision. My sister thought that maybe he needed glasses. During the eye exam the Dr saw that something was wrong and told her to get him to a neurologist immediately. Ryan was the sweetest young man. He always had a smile on his face before the diagnosis. He passed 16 months later on October 31, 2016 at home with family around him. I think about him every day. 😢

[bunnypumpkin]

My best friend Laura died of GBM. She was 52. She died in 2005. Nearly 20 years ago. We were each the sister that we didn't have. She was Argentine & lived in Bs. Aires. I'm American and lived in various places, mostly. California. Laura was an attorney and the courts were closed in December so we spent several weeks together each year, often traveling the world but also just hanging out.

I went to see her 4 times after diagnosis. I arrived just as she was about to go into the operating room. Oddly after the operation her husband was given a clear glass vial holding the tumor & and was told to take it to the lab! Only the 2 of us were with Laura when she came out of surgery. Then we went down to give an update to her many many friends. Her husband wass still holding the tumor so I suggested to him to put it in a paper bag which he did.

She lived for two years. I went down to stay with her 4 times. We were able to take a few days trip to the Andes on my second trip.

On my third trip she refused to see me, but she was very far gone at that point.

On my 4th & last trip she no longer could speak or interact with us. I went to visit her at her apartment several times. Her husband and mother and friends were always there. I just sat on the couch & held her hand and talked to her.

I'm old now. We had planned to live together in our old age. 6 months in California & 6 months in Argentina so that we would always be in summertime.

I never made another best friend. I miss her every day. We did so many things together.

If you got this far thanks for reading my comment. Just writing about her makes me happy. I remember so many things & conversations we had.

My sister was a paranoid schizophrenic. She died a few years ago age 65. She was completely totally crazy. She became ill in her 20s. Another tragedy 😢

[susiebloom]

My Mom passed from this in ‘93. She was 57. She complained of headaches and balance issues and was diagnosed the next week (I don’t remember the month). Surgery and radiation followed. At that time there were no other treatments. Dr gave her 18 months. The cancer came back on the other side of her brain 16 months later. She never had any of issues talked about in the video. She slowly lost consciousness and passed away almost to day of 18 months. It was very peaceful at home.

[wendydlugos]

My 72 year old BFF of 67 years, was diagnosed in Jun 2021, but her first symptom was Jan. 2021. She is on the far end of the stats, which were 12-16 months. and still surviving & mowing her lawn July 2023. I travel from Idaho to Illinois every 3 months to make new memories with her. Her biggest challenge is memory of recent things & aphasia. She has no pain..yet, and her Dr. says she may not. She is on max anti-seizure meds, completed all chemo & radiation & proton therapy. She is a miracle & stays upbeat & walking her faith in God everyday🙏🏼🙏🏼💖. I so appreciate this information, Julie, and plan to help her through to the end. My experience is caring for my mom for 5 years, 2 1/2 of which she was on hospice.

[parabola]

I wouldn't say it's one of the worst ways to die. My father passed from it 8 years ago. There were so many intense and beautiful aspects to his death. He was having seizures and lost his ability to speak. However, he became childlike and pleasant and only had a 2 minute memory. So if he went through a pain spell or seizure he would immediately forget about it. The night before he went unconscious and passed, he sat in his room and spoke to spirits and was absolutely elated.

[GenerationXChick]

My grandpa was diagnosed with this horrible disease 5 days after he retired. This was 30 years ago. I hated that my family pressured him to go through multiple surgeries and treatments. He died 14 months after his diagnosis. I wish that he would have been able to have lived the last moments of his life at home. Thank you for making this video.

[Yarona]

My brother (well, best friend, we were together since the diaper days), passed from this in February. He was 47, left 2 children and a wife behind. He was a very very special soul and will always live in our hearts and memories.

[MandySkogeboREALTOR]

My dad is 76, was diagnosed with glioblastoma 8 years ago and is doing okay. He has had 2 resections. Wore optune for a year. He is in a clinical trial at Emory University and received 25% more radiation than standard protocol. He typically takes temezolide every 5 or 6 months. It affects his kidneys though so sometimes he can’t take it as much.

I’m so glad they are advancing treatments for gbm. I’m glad my dad was able to contribute to that by being in the clinical trial.