u/Miserable-Joke-2927

Hello. I used to write here sometimes.

My mom is gone now. She left with peace and family around her. It was beautiful. Thank you all for going this through with us. I got much advice and support.

I share our story once again and then i hope i never have to come back to this sub. Fuck gbm, btw.

Im a doctor who works in palliative care and i have seen similar things all my Career long, i remember when some of you asked me about palluitive medications, i tried to help.

My mom got her dx in september 2025 after weird behaviour and vomiting. There was little chance in her right temporal lobe. It was 2 cm. Turned out that her weird acts were epileptic disorder and she got keppra and came back to normal. They tought that it looked like low grade glioma, so they operated in november 2025. In december we got the results and it was gbm. No symptoms. Soc ended in february 2026 and theystarted tmz. Scans were clear in 5/26 but after that she got confusion, issues with Phone and balance problems. Went to er in june, swelling, radiation necrosis regrowth, inoperable. Started steroids, avastin and lomustine. Didnt help.

She lost her ability to move by time after that. She could speak only few words. She was awake only hours. She got diapers and nurses started to do home visits. She was nearly bedridden but 2 weeks ago she went to shoppinhg with wheelchair when my brother was helpling. She used her card and paid croseries.

Last weekend our stepdad was at car event. In saturday she ate ice cream and enjoyed the sun. After that i made a meal and she couldnt swallow it anymore. She went to bed and never woke up. We started home hospice on sunday. She slept peacefully and had a pump for medications. It worked well.

Today she got Fevrer and her oxygen level dropped. We were around her and i said she may go now. She went. Her favorite Color was red so we dressed her up in red dress and found a red candle for her (from cristhmas). She looked so pretty.

After that they picked her up. Im at home with my brothers and my stepfather. Home is empty when mum is not here anymore. We still have each other.

And at night when i was brushing my teeth at the toilet with my brothers spouse i said that mum would be pround of us we made this so good and this all was so beautiful. Lights went off like 2 seconds and then came back. I think that it was mum saying hi and sending love.

Lost my mum, im still relieved that she didnt regain conciousness after swallow problems. It was 4 days in hospice. I had best mother and i told that her many times, also after she was dead. I love her forever.

Thank you here supporting me. Wish you luck and love.

My mom got diagnosed gbm wildtype unmethylated in september. Craniotomy in november and soc after that jan-feb 26.

Now she was on tmz until now. Mri was clear in early june. She declined rapidly after that. There was swelling, radiation necrosis and possible regrowth. They started steroids, she came back to herself and came back home. She feels good.

Oncologist called me today. Neuroradiologist did check mri and the result is that there is new growth and its now inoperable. She couldnt tell, why new operation is not possible. It was a judgement that came from upper level.

They are going to start avastin and lomustine when her liver enzymes are back to normal, they went high because of steroids.they are decreasing dosage, if they have to. My mom is willing to take risk that her symptoms get worse if they have to cut off steroids, she wants to give a try for lomustine.

Have you any experience this kind of situation? Optune is not available in our country and there are not ongoing trials. Oncologist said that they ask for trials from diagnosis center if there is anything available, if lomustine dosnt work. She told at the moment she knows nothing about on going trials, wtf?

I try to seek something outside our country (we live in eu) but it looks like that we must pay treatment ourselves if i find something promising.

No nutritionprograms etc, no to treatments that dont gross bbb.

Hello. I have sometimes answered your posts here, but this is the first time, when i post.

My mom 62F had confusion in sept 25. We took her to ER,they saw something in her right occipital (or temporal) lobe. It looked like low grade glioma and the confusion was an epileptic disorder. They started keppra and my mom went back to the normal. 1 month follow-up scan that something was still there and they desided to operate. Craniotomy was in november and initial pathology was glioma gr 2-3. Final results came in dec 25, glioblastoma.

Soc was in jan-feb this year and after that she has been on tmz. Follow-up scan in begining of 6/26 was clear.

After that she got confused and very tired again. She fell couple times. When i visited her last weekend, she was not herself. She just sat and did nothing. After that my stepfather noticed that she cant use fork and "eats " from empty plate with empty fork. We also noticed that she doesnt react anything that happens on her left side.

She is denial and didnt feel anything strange, as always. She said that she feels well and mocked us that we all the time look after her despite "she is healthy".

So we took her to er last tuesday. She got to the hospital and mri is showing"something new" near te operation area. Spots, that werent there 4 weeks ago. They say thar it Coud be radiation necrosis or that the tumor kicks in again. They started steroids and there is massive improvent in her health. She talks like before this disease, she walks better. But the left side neglect is real and raw.

Im worried about new lesions now. They didnt glow while contrast mri, but the original tumor didnt do that as well. And they are NOT in the original tumor cavity, they are ABOVE it.

They think that it is radiation necrosis but they send pictures to neuroradiologist and if he agrees, they treat my mom to decrease symptons of necrosis.

Im worried rahat there is a recurrence because original tunor looked same in contrast mri.

Has any of you faced something Similar? I would love to know whag are the next steps.

I hate this fucking cancer. I cant lost my mom, she means me everything.

Can you tell your ecperiences? What can i do? We live in Skandinavia so there is nothing more Useable left than normal treatment protocols. There is no optune, clinical trials että.

I hate this. Help me. Im already grieving that i will lost her to this shitty ting. Shitty SOMETHING.

thanks, i needed to vent.