u/maries345

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.

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.

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.