r/glioblastoma

My (f64) husband (m57) had our first oncology appts yesterday and today. Tumors found on May 6. He will start 6 weeks of radiation along with chemo in oral form. He gets an MRI tonight and will be fitted for facemask next week. The staples came out today. I'm sitting here at a hair appt that was already scheduled for color. Feeling guilty as hell. Our daughter is home with him. He has grade 4 glioblastoma. There are also the meds that they will put him on slowly that attack these cells. They are not cancer drugs but they say they attack, metformin, prozac and the other one escapes me right now. Both appts they let me record which was awesome. Then there is a FDA approved treatment that puts patches on his head attached to a machine that send waves to attack. He will get that after chemo. We are so pleased with his care so far.

They are consulting to see if he qualifies for the alpheus trial.

Our teaching hospital is Penn State. We live in central Pa.

He is still very foggy and has short term memory loss. I have a whiteboard that I put the date and what activities are for the day. This seems to help

I will listen to the recording over the weekend and make more notes. Just wanted to send an update.

You are all so kind and you are also in my prayers for your loved ones.

Talk soon. Thank you everyone.

hey guys, i have a team from 3 different universities and we have been working on AI applications in digital pathology for glioma cancer patients and we’re looking for an external validation dataset other than TCGA and CPTAC, an ideal dataset would have genomics information (CNV is prefered) along with WSI data and clinical informations (age, sex, OS etc.) as either open access or controlled access. We have some and can get the ethical requirements if applicable. Also the dataset should be %100 anonymized to ensure patient privacy. To prevent any misunderstandings we’re not training AI on bulk patient datas we’re just tryna create a system that could help decision making for doctors/ healthcare authorities. If you know a good dataset or a hospital/ research center that we could contact i’d appreciate that , thanks for your help in advance and if you feel like there’s something wrong contact me and i’ll explain myself in a better way.

This feels unreal. I’ve definitely cried a lot since her diagnosis, but her being gone is something I can’t wrap my head around. This past four months just happened so fast. The decline was rapid. Has anyone else felt this feeling of unreality? When does it finally hit? I feel sort of numb and I’m just waiting for it to hit me like a ton of bricks. I love my mom so much and I just want her back!!!

Well to start. I usually don't do this type of thing so i don't know where to even start. My dad was experiencing symptoms such as losing memory ( forgetting family member names, basic store names and even items) I feel like a horrible daughter because I just thought it was stress..... He reached out to my aunt and she took him to the er. We discovered that he had a tumor in his brain but the surgeon who operated on him said it did not appear as cancer. i have so much anger because they made it seem like it was going to be a walk in the park. The original plan was just to "Kill whatever was lingering so it wouldn't turn into cancer" before the diagnosis i did research on gilomas and stumbled upon GBM. I wish i didnt but at the same time im glad i knew what to expect. Im so hurt by all this and the worst part is everyone around me is telling me to pray and put things in gods hands but its very difficult for me to do so and have faith. Im not ready to live in a world without my father, he is my best friend, my protector and my rock. Anticipitory grief is real. Going into this knowing the outcome....... Still having to be a new mommy throughout it all is scary too. My baby looks for him when hes not home. This diagnosis has just made me crumble to pieces.

My (F64) now 57 yo husband has been home 8 days. I woke up this morning and thought it was all a dream. Of course, it's not. Today is our first oncology appointment. I did see the pathology report on the portal. Thanks to our daughters, I have discovered ChatGPT.

Here is what it summarized: Your report is most consistent with an IDH-wildtype glioblastoma (WHO grade 4), which is the most aggressive common primary brain tumor in adults. Prognosis varies substantially between individuals, especially depending on age, overall health, tumor location, how much tumor was removed, and molecular markers like MGMT methylation.

I haven't said anything to my husband yet, because I just don't know how to. Our two daughters will be at this appointment this afternoon.

I found tons of questions to ask online, I'm going to bring them along. I would imagine they will be able to cover most of it.

I am bringing my new tablet to record everything and to take pics of before and after MRI.

Prayers to all of you and thank you for your support as we go down this road we never imagined we would be traveling.

Wanted to ask for some advice for how to best navigate home care for my mother (69 years old). My mom was diagnosed just over 4 years ago and has endured resection and many rounds of chemo/radiation. She was doing okay for a couple years but was told her cancer was back about a year ago. Since then, she has had some functional decline but things got really bad in January of this year. She is not completely incontinent, has limited ability to stand and walk on her own (changes each day), and has some pretty intense delusions/mood swings. I live in a neighboring city due to school and my 72 year old father is her primary caretaker. I’m visiting and caring for her as often as I can, especially given her recent decline in function. She’s currently receiving avastin infusions to reduce brain swelling. Right now, my father is really struggling to care for my mother. we have nurse aides who come 2-3x per week to help with bathing. It’s been a fight to get any more help in the home, but my father really can’t handle lifting her on his own. Every time I bring up increasing days/hours of home care or hospice, my mother becomes explosive, incredibly aggressive, and difficult to redirect. My mom made it clear early in her diagnosis that she wanted to
stay at home, but i’m concerned that my dad isn’t able to give her the care she needs. I want to respect my promise to her but I also want her safe and comfortable. Mainly posting to get input on peoples’ experience with caretaking and decision around initiating hospice. Since she’s getting avastin, I don’t think she’s hospice eligible. But I also wonder if the avastin is improving her quality of life or prolonging her suffering. Ugh. This disease is truly so terrible and I hate how so many memories of my mother are clouded by her battle with cancer. No decision feels like a good one, but i’m hoping to find the least bad one. any advice is welcome, i’m in my 20s so none of my friends have any advice or understand what this is like. thank you for reading

I know the GBM kills people by putting pressure the brain resulting in degradation of it's fucntion. I wanted to undertand how the end will be. Will they die in pain or peaceful? Will it be a seizure or organ failure? Will it the brain stroke?

My father just became bed ridden today after his recurrence. He is saying and we also undertood that the end is near. But we don't know how.

Hi all, diagnosed in November and went with all the process surgery, tmz, radiation, irrontican and avastin. Recently my father had fast breathing pattern and spo2 dropped to 57. How common is this to gbm patients?

My dad was diagnosed with GBM WHO Grade 4 13 months ago. He underwent biopsy extraction after first the tumor was discovered in the MRI in the right parietal lobe. The neurosurgeon suggested not to go ahead with surgery for debulking of the tumor. He said it may result in permanent damage of motor functions of left limbs. I went to 3 other neurosurgeons and all said just to go ahead with the radiation + chemo. All said the tumor was small ~4 cm.

EBRT of 30 cycles with Temozolamide was done and then for every 28 days we had Temozolamide 300 mg upto 8 cycles. He was ok all these days and one day after our great trip (15 days travelling around the country) he started falling everyday all of a sudden. Left leg became very weak. We had an MRI after 11 months from initial MRI (the radiation oncologist didn't prescribe one even asking multiple times).

This time the original tumor became half ~2cm, but the two new tumors at corpus callosum and right lateral ventricle. At this stage, the swelling was also very heavy and they started steriods. And he was given a live expectancy of 6 months at this stage.

We again went to some neurosurgeons and all adviced palliative chemo. After discussing with him all these, he is asking not to go ahead with the chemo and he wants go away as soon as possible as he is burdening us. I convinced them somehow and scheduled the chemo appointment. Just as we are going to the first chemo cycle, he tripped and fell again. I don't know what happened but this time he became completely weak. He couldn't move his legs (btw no pain or anything. He just couldn't move them). we had to carry him around in a wheelchair. He is not at all cooperating with the treatment and askimg us to kill him somehow. I feel like he lost the will to live finally after coping up with it for all these months. My mom too, saying we can stop these treatments as we won't be able to move him around to hospital if he became bed ridden.

I'm at lost now. I want to continue the chemo hoping it helps with the brain swelling and gives him some relief during his final days. But I'm also not sure what to do. There are so many regrets i had in my mind, if we had taken him to a better neurosurgeon who would directly debulk instead if biopsy, may be he can live more freely. May be if we have taken the MRI before, we would identify the new tumors beforwhand and treat them. May be if we had started the second line treatment few weeks before he wouldn’t become bed ridden. Idk all these thoughts are eating me.

So my son 15 was recently diagnosed.

I am so scared

I am lost.

I have questions but im afraid to ask them. I just want it all to go back to how it was before.

Hello, first time poster here. My Dad (aged 60) was diagnosed with GBM last month. Unfortunately his tumour is too big to remove/do surgery on, and after a biopsy they feel that radiotherapy will be too risky. He'll be taking chemotherapy tablets, but all of the information on chemo for GBM that I can find is about having chemo in conjunction with surgery or radiotherapy. Just wondering, does anyone have experience with just having chemotherapy by itself? From what my step-mum said (she is the one who went to the hospital with him), it seems that the chemotherapy will mostly be about prolonging his life rather than easing symptoms, is this the experience that others have? I'm asking here because I don't want to overwhelm my step-mum with questions as she is going through enough. I know every experience is different but just basically talking into the void and hoping to see someone who has been through a similar thing, I feel so helpless. Thank you, I might take a while to reply to any comments xx

Hello, first i’m really sorry that you guys went or going through this ..
I’m looking for options for my mom that she was recently diagnosed, can someone please help me on how to navigate through clinical trials process how to apply and what are the criteria’s and…
I’m trying to be optimistic and fight this with her and considering all possible options.

I'm 17 and my grandma has stage 4 glioblastoma brain cancer. She got diagnosed 13 months ago, I hate to say it but it feels like everyday is a countdown to her death. I try to be optimistic about the situation and be there for her and also my mom who is the one taking care of her. But she is deteriorating in front of us all and we are meant to act like nothing is different? My happy facade is fading and i don't know how to cope with it all

I hate that she knows she is going to die and that she can't do the things she loves to do. Just today she got pneumonia, the second time she’s had it in the last year. It just keeps getting worse.

I feel incredibly selfish for making this about myself but truthfully I am scared of what is going to happen to her.

Hi everyone, Im a nurse and ive noticed in the last year or so there has been an increase in the number of GBM patients im caring for. I don’t think this is necessarily because the diagnosis is increasing, but more that my medical surgical floor is being sent more cases. As a patient or the loved one of a patient, what is the best way for your nurse to help you? What can i say and do (or not say and do!) to make the recovery process easier for you? I guess im just asking how can i be better nurse for my patients? Any and all advice and suggestions welcome. Thank you and im so sorry to anyone faced with battling this condition.

So to cut the story short,my grandfather from the father's side had stomach cancer,than mother's father had lung cancer,my father died from brain cancer in 2001 (Cant remember which version or type), mother's sister died of lung cancer and from this december on,my mother is battling glioblastoma stage 4 wild type cancer..

Now me and my sister are in our 30s and honestly this got us quite worried, what kind of tests can we do to see if we may be prone to getting cancer?

My LO has a left frontal lobe tumour and they have become very demanding and rigid. They are upset if we don’t do exactly what they want to do at specific times. It’s interfering with the peace and wellbeing of everyone around them. I know it’s because of the tumour but it’s so hard and wondering if anyone has advice? We want to make the most of our time with them but we also can’t keep bending over backwards and if we say “no” they get angrier and more irritable. We are patient, speak calmly, try distraction. What else to do?

This is a really hard post for me to make. My strong husband, aged 56 on May 6, now 57, has Glioblastoma. Took him to ER on May 6 as he as repeating himself. The MRI found this:

Cerebral parenchyma: Heterogeneously enhancing mass in the anterior right temporal lobe measuring 5.3 x 3.9 cm and

satellite enhancing lesion anteriorly within the right insula measuring 2.3 x 1.6 cm. Foci of signal dropout within the insular

lesion in keeping with prior hemorrhage. Vasogenic edema within the right temporal lobe, insula, basal ganglia and frontal

lobe with approximately 12 mm right to left midline shift and effacement of the right lateral ventricle.

May 8 they did surgery to remove the large one in the front. They did a CT scan roughly six hours later:

Cerebral parenchyma: Postoperative pneumocephalus. Gas filled surgical cavity at the site of the resection of the right temporal mass. Vasogenic edema in the right cerebral hemisphere. Extra-axial spaces: Thin layer of extra-axial blood products along the right cerebral convexity. Ventricles: Effacement of the right lateral ventricle. No hydrocephalus. Mass effect: Right-to-left midline shift measures 8 mm (previously 12 mm preoperatively). Basal cisterns: Preserved Posterior fossa: No tonsillar herniation Calvarium/Skull Base: Right frontotemporal craniotomy. Right cerebral convexity scalp hematoma.

Less than 12 hours later, he had a huge blood clot and they had to operate AGAIN.

CT after surgery

FINDINGS:

Cerebral parenchyma: Interval evacuation of previously noted intraparenchymal hemorrhage. Focal intraparenchymal

hematoma and a residual or recurrent lateral to the right lentiform nucleus which measures 1.5 x 1.4 cm. Postoperative

pneumocephalus. Right cerebral hemisphere vasogenic edema.

Extra-axial spaces: Thin layer of extra-axial blood products.

Ventricles: No hydrocephalus

Mass effect: Right left midline shift measuring 7 mm

Basal cisterns: Preserved

Posterior fossa: No tonsillar herniation

Calvarium/Skull Base: Right cranioplasty and overlying scalp hematoma.

Visualized paranasal sinuses, mastoids, nasopharynx: Clear

Visualized orbits: Unremarkable

IMPRESSION:

Interval hematoma evacuation. Small hematoma in the lateral aspect of the right basal ganglia. Significant improvement of

the midline shift from previous CT. Anticipated postoperative pneumocephalus and extra-axial blood products.

We came home Wednesday. We go Thursday to get staples removed with neurosurgeon, then onward to Radiation Oncology appointment, followed the next day with Hematology Oncology.

I'm trying to stay strong for him. Our entire family is devastated.

He is sleeping peacefully in bed, I just wanted to pop on here, introduce myself (F64), I'm not sure where to go right now.

Thank you all.