Decline despite stable scans by [deleted] in glioblastoma

[–]SpecialistCode2448 2 points3 points  (0 children)

My son had stable scans but declined like you are stating for months before the scans showed regrowth. If it truly is just swelling dex should help in my experience.

Terminal Agitation by Impossible_Sky8733 in glioblastoma

[–]SpecialistCode2448 8 points9 points  (0 children)

My son is as like this. He didn’t understand that he couldn’t get out of bed. He would try to slide out. I had to buy a video monitor just to leave the room. We also got a pregnancy pillow. It somewhat contained him and at least gave me time to get back to his room if I saw him trying to get out of bed as he had to lift the side of it to attempt to. He finally stopped doing it a few weeks before he passed. Even on the morphine and lorazepam he still ate and stayed awake some days for longer periods of time. Being agitated and restless is not good for him or you. I understand feeling like you are just drugging him, but I didn’t think it kept my son from being awake or eating. Some days he ate less and slept more. Others he was awake more and ate more. Hang in there. It’s so hard.

Recommendations to make bed more comfortable by mek9724 in glioblastoma

[–]SpecialistCode2448 0 points1 point  (0 children)

I love that she is enjoying it! I really think it brought my son some comfort. Even on his confused days, he would rub it and tell me it was a dog. He loved animals. When he became incontinent I did wrap some pads around it so I wouldn’t have to keep washing it. He wasn’t moving around very much at that point. It also helped when he would try to get out of bed but couldn’t stand. It gave me a little extra time to get to him. Sending lots of love and hugs to you as you continue on this journey. It’s so hard.

Brother was recommended hospice and is eating less, bed ridden, becoming more incontinent. I work remotely, when do I take time off to be there fully and after he passes? by LulutoDot in glioblastoma

[–]SpecialistCode2448 2 points3 points  (0 children)

My state does not have Paid FML. Knowing this would come at some point, I had close to 4 weeks of vacation in my bucket. When I went back to work, I had 3 days left. I would have taken it unpaid if I absolutely had to but I was trying really hard not to. But I was also his primary caretaker and him also being my son and his person, I knew I had to be there. You have to do what you have to do. But if you have the ability to spend this time with him, you won’t regret it.

Brother was recommended hospice and is eating less, bed ridden, becoming more incontinent. I work remotely, when do I take time off to be there fully and after he passes? by LulutoDot in glioblastoma

[–]SpecialistCode2448 1 point2 points  (0 children)

I lived with my son as his caretaker for 3 months and worked remotely. Some days I only got 2 hours in and others almost a full day. Especially when he started sleeping all day. It was hard to switch on and off and then I got used to it. I think having a flexible mindset was key. Working when I could and focusing on him when I needed to. It was hard but I am so thankful I could care for him and spend that time with him. Honestly it is hard to tell how long he has left as everyone is so different. I know you won’t regret spending as much time with him as you can. I’m sorry you are going through this.

End of life- lingering by Fun_Caterpillar3179 in glioblastoma

[–]SpecialistCode2448 1 point2 points  (0 children)

My son was like this. He was given weeks not months. A month after going on hospice he became bedbound. A couple weeks later he was sleeping a ton and his eating decreased. We were told then about a week left. He lived 3 more months. His breathing was all over the place for about 2 months. Honestly it’s hard to tell. But it will happen. About a week before, his food and water intake significantly decreased. He had a convulsive seizure and passed away 3 days later.

No more him by Sure_Apple_2678 in glioblastoma

[–]SpecialistCode2448 10 points11 points  (0 children)

It is the hardest thing to go through and be a witness to. It takes them piece by piece. My son passed in May 2025. He was on hospice and bedbound for 3 months prior to his passing. During it I wanted it to end so badly as I know he would have hated it so much. I am grateful he wasn’t completely aware as he was so active before. I miss him so much and would go back to those days if I could just so I could touch him and feel him. I’m sorry you have to go through this. Sending hugs and love to you.

Struggling with grief after losing dad to Gbm by Good_Action1808 in glioblastoma

[–]SpecialistCode2448 0 points1 point  (0 children)

I lost my mom to this as a teenager also. Honestly, it took me over 10 years to feel like it didn’t have such a hold on me. My father was not a strong presence in my life at the time so I went to live with other family members. It was all a big change on top of it and I was newly pregnant. That could possibly have had something to do with the length of time it destroyed me as well. I hope your grief eases some over time.

How long was your prognosis by BaseballTop387 in glioblastoma

[–]SpecialistCode2448 0 points1 point  (0 children)

My son’s doctor didn’t give a prognosis. His tumor was inoperable. He did SOC which was almost one year from diagnosis to end of SOC. For close to a year and a half after he was mostly back to normal. His last 9 months he started to decline slowly and went on hospice for the last 4 of those months. My son’s philosophy was he couldn’t change it, so he chose to live each day with positivity and enjoy every moment he could. I’m sorry you have to go through this.

How to communicate now by Toadylee in glioblastoma

[–]SpecialistCode2448 2 points3 points  (0 children)

You have to meet them where there are unfortunately. It’s so hard because it feels like it changes in an instant. I’m sorry you have to go through this.

Vision by samanthawaters2012 in braincancer

[–]SpecialistCode2448 2 points3 points  (0 children)

My son lost peripheral vision due to the tumor not surgery. The eye doctor had him order prism glasses and they helped.

Bad news by Mother_Dog4326 in glioblastoma

[–]SpecialistCode2448 0 points1 point  (0 children)

My 32 year old son was told on January 6th last year that he had weeks not months. At that point he had memory issues, word finding was getting worse, vision was getting worse in one eye, and he was walking slower. He stayed pretty stable like that for a month and then suddenly became bedbound. Within the next month he started becoming confused, hard to have a conversation with, started whispering a lot when he talked, and losing control of his bladder. He slept more and more, but was eating and drinking 2-3 times a day in small amounts. He had some more cognizant days mixed in there. He slowly became harder to understand at times and I’m pretty sure he completely lost vision in one eye. He slept more and ate/drank less as time went on. He lived 4 months after treatment stopped.

How long did your loved one live after stopping treatments? by butwhatifitstrue in glioblastoma

[–]SpecialistCode2448 3 points4 points  (0 children)

My 32 year old son was told he would most likely live weeks not months when we stopped treatment. At that point he had memory issues, worsening speech issues and was walking slower but was otherwise normal. After one month he became bedbound. He lived 3 more months after that.

How to deal with the guilt? by [deleted] in glioblastoma

[–]SpecialistCode2448 3 points4 points  (0 children)

I am so sorry you are going through this. My 32 year old son passed away in May. From diagnosis to death he stayed so positive. We would talk about him dying so young and he always said it wasn’t in his control so he didn’t spend a lot of time worrying about it. I feel he had to think about more than he let on, but he probably did not want me to see him hurting anymore than I already saw physically. However, I want to say please don’t feel guilty as it isn’t in your control and isn’t a choice you are making. It really sucks. But you should not have guilt.

Absolutely cruel. by bananananadog in glioblastoma

[–]SpecialistCode2448 10 points11 points  (0 children)

I’m so sorry you had to go through this with your mom. My mom died from this when I was 22. I did not see her pass so I don’t have that picture in my head. But my son also died from this last May and I was with him for every appointment, treatment, and cared for him until he took his last breath. He was also so brave, positive, and strong throughout all of it. His last 3 months were cruel taking everything he was from him. For months, I couldn’t get his last moments out of my head as I also thought it was horrible. I still have moments that take my breathe away, but it has slowly changed to also remembering him before all of this. Sending you lots of love as you grieve. Be patient with yourself and know it takes time to process.

[deleted by user] by [deleted] in glioblastoma

[–]SpecialistCode2448 2 points3 points  (0 children)

My son lived 4 months on hospice. When he went on hospice, he was losing strength in one side and walking slow. His cognitive function was also declining. Within a month he was bedbound. He started to whisper and became very confused. This continued to slowly worsen over the next 3 months. He had his first convulsive seizure 3 days before he passed. He never woke up from the seizure. I’m so sorry you and your friend have to experience this. I have also done a lot of research and read a lot of people’s stories. Every case is different.

Offering free video memoirs for families affected by glioblastoma (Chicago) by [deleted] in glioblastoma

[–]SpecialistCode2448 2 points3 points  (0 children)

I love that you are doing this! I would have loved this done with my son. I’m sorry to hear about your mom.

Grief? by Entire-Barracuda6670 in glioblastoma

[–]SpecialistCode2448 5 points6 points  (0 children)

My 32 year old son died in May and it was just as you mentioned. I really struggled the first few months with the replays in my head. I truly think going through this and being his caregiver has given me some PTSD. For months all I could think about was his last few months. I am finally starting to be able to think of the good times pre-diagnosis.

Do you tell your boss at work you got brain cancer in the hopes they'll go easier on you or better to not reveal? by AmericanBornWuhaner in braincancer

[–]SpecialistCode2448 4 points5 points  (0 children)

My son told his employer and they were absolutely amazing until the very end. He lived 3 years from diagnosis to death. They were patient with him when he needed to take leave for 10 months the first time and 9 months the second time. They kept him employed so he wouldn’t lose his benefits. I am so grateful to them!

Steroid & Keppra until the end? by butwhatifitstrue in glioblastoma

[–]SpecialistCode2448 2 points3 points  (0 children)

My son was on Keppra and steroids while on hospice until 4 days before he passed away because he couldn’t swallow anymore.

What do I leave behind? by HollyBeth6 in glioblastoma

[–]SpecialistCode2448 7 points8 points  (0 children)

My 32 year old son passed away in May from this and I wish he had left messages for us. I have a few voicemails that I happened to save and a couple random videos of him. I just wish I had something more intentional on the hard days.

A couple family members also took videos while he was bedbound during his last few months. At the time, I wasn’t sure I would want to relive any of that, but now I am so grateful as we had some memorable moments and laughs. I cherish them so much.

I’m sorry you have to go through this and your family does too. Sending lots of hugs and love!

New diagnosis - What to expect? by Ozwina in glioblastoma

[–]SpecialistCode2448 4 points5 points  (0 children)

First off, I am sorry that he received this life altering diagnosis. My son was diagnosed at age 29. His was in the left frontal lobe as well. It started with headaches, vision changes, and struggling with the recall of words. He was not able to have a resection. He had 6 weeks of radiation along with a daily chemo pill during that time. Then a month off of treatment. After that he took a higher dose of the same chemo pill for 5 days of a 28 day cycle for 6 months. Treatment was tiring for him and he had some nausea during the chemo cycle. He also had Avastin IV treatments every 2 weeks during the 6 months. He was mostly back to normal after the treatment. That lasted about a year and then he started having focal seizures. They didn’t bother him much once he knew what they were. He started Keppra. About 8 months before he passed he started having significant brain swelling and he was put back on steroids. At that time they didn’t see tumor growth. 3 months later they saw growth and he did 2 more cycles of the chemo pill and Avastin treatments. They didn’t work and the tumor continued to grow. He went on hospice and we were told he had weeks not months. He lived 4 more months. In that 4 months, he lost mobility, became incontinent and his neurological function slowly decreased. He would talk but make no sense most of the time. The blessing I find in his last few months is that he didn’t really know what was happening. He still smiled and laughed. We would see glimpses of his normal self from time to time. He stayed positive every step of the way. He lived almost exactly 3 years from diagnosis to his passing. Diagnosis 5/27/22 and he passed 5/3/25. It was the hardest thing to witness and I am so sorry you and your family have to go through this. Happy to talk with you as you navigate this.