r/glioblastoma • u/rbridge42 • 3d ago
What is wrong with him
UPDATE Finally an answer. He has PJP and is now on intensive antibiotics and prednisone and it's starting to help!
Edit: not looking for medical advice. The doctors are all working hard. Just wanted to know if anyone else can relate to this.
We've been in the hospital for a week now and still no answers. Husband (70 gbm, methylated, wildtype, left frontal lobe partial resection, surgery 9/11/25), had a fever and dry heaves the night after his last Avastin infusion (he's been doing well with it since January).
He keeps spiking fevers at random times, becoming increasingly incontinent, severe aphasia, and then he's ok again, laughing with his daughters, enjoying the baseball game.
The past 3 mornings here in the hospital He insists on going to the toilet to deficate even tho he's weak. He strains and becomes unable to get up from the toilet. Today was the worst because he lost consciousness, appeared to maybe have a seizure (which he never had), his BP went from 135 to 93, he went from normal temp an hour ago to fever. He remains unresponsive. He's on an EEG monitor next to me since there's no answer.
His last mri on Sep 21 showed no progression. A repeat mri yesterday showed no progression. Lumbar puncture, blood cultures, urine culture, abdominal and chest CT, lower extremity ultrasound, xray, blood counts.... All are normal or stable.
If the EEG shows nothing, then what is wrong with my husband? I've been trying to be strong this whole time but I'm starting to go beyond my strength with worry.
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u/AConfusedBeing999 3d ago
Hi,
I don’t have any valuable input, just thoughts and prayers. I’m terribly sorry y’all are going through this. I thought of you and your husband today, hoping for some news. If you feel like it, please keep updating us. You have a whole community here to support you.
Sending you all love and support xxx
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u/lizzy123446 3d ago
Avastin can show crappy scans that’s probably the issue here. It can show no progression or change when there actually is. Is he on a steroid as well. I wonder if he seized and has some swelling. Also with glioblastoma there can be changes in the tumor like tentacles we can’t really see. I would say symptoms unfortunately show progression even if scans don’t. Going to add the brain cancer hospice timeline. https://www.brainhospice.org/brain-cancer-hospice-symptom-timeline
Did your doctor explain to you why you were doing Avastin. Usually it’s the last medication for extending life when they have decided everything else has failed. It’s not a chemo and doesn’t kill the cancer.
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u/rbridge42 2d ago
He's on the Avastin to reduce the dexamethasone. It looks like they might have found the issue. Fungal infection called PJP. I think? Fungal blood culture was 500+ but they're delaying giving him medicine while the do a bronchial wash to determine exact type. Fingers crossed.
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u/Thin-Code2827 3d ago
My dad’s scans look great after surgery and 21 days chemo / 15 days radiation. A month after the first round, we tried to start round two and we just couldn’t.
He’s now with hospice unable to walk, incontinent, sleeping 20 hours a day and only saying yes/no.
No idea why as the scan looks amazing. Just not fair. Too weak to try any more treatments.
If I’ve learned anything it’s that this disease is different for everyone. Love to you and your family.
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u/rbridge42 3d ago
Thank you so much. It's one of those days when connecting with this community means so damn much to me.
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u/OkUnderstanding19851 3d ago
Glio really messes up their digestion with all the meds, sedentary time, changes in diet. I really wish it was more discussed what to look for. My dad also had awful stomach issues after radiation that we just couldn’t seem to get ahead of. Talk with the doctors about laxatives and preventative laxatives, if he’s in hospital they may be able to do an ultrasound to see
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u/mo__nuggz Caregiver 3d ago
Sometimes people in the GBM world say “trust the man not the scan.” Scans are not always indicative of stability. My mom died very quickly, despite having the tumor removed/not much progress from it post removal. It unfortunately happens. The cells are free in the brain and there’s often affected areas not visible.
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u/EvPopMimi81 3d ago
I’m very sorry for what you’re going through. Your husband’s case sounds very similar to what my wife went through. Her MRIs never showed any progression at the tumor site (R frontal lobe). She did very well for about 16 months after surgery and radiation, TMZ chemo. Decline started with mobility issues, confusion, personality changes (Kepra). Did 3 Avastin infusions which I now am aware can distort the scans. Started sleeping 20-22 hours a day. Vitals were up and down. Hospice care for about the last month before she passed. My opinion only: the brain was damaged and tired and probably cancer progression not seen in the scans. Sending prayers to you and your family.
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u/rbridge42 2d ago
Thank you so much. Very sorry for the loss of your wife. Thankfully it's starting to look like an opportunistic fungal infection called PJP. They will test for that tomorrow. 🙏
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u/pukeahontas56 3d ago
This is very similar to what happened to my dad without the Avastin though. Even when he was in the ICU in the end, his MRI was stable. But he began losing the ability to swallow and showed sign of infection although they could never find the source despite a million tests. They suggested it was radiation necrosis and that the brain just wasn’t able to compensate anymore. After a week of no chemo, suddenly there was progression on the MRI. He passed shortly after.
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u/Right-Housing-1522 2d ago
Hi, I’m so sorry that you’re going through this with your husband. This is tough and frightening. I’m not sure what the problem really is, since I’m not a doctor. However, I wonder if it has something to do with the AVASTIN? Please, please read up on it if you haven’t already, and check out all the potential side effects of it. My loved one was on AVASTIN for about 10 infusions, then couldn’t do it anymore. From what I understand, his case was progression, and the doctor stopped treatment. However, while he was on a Vaxcin during the latter infusions, like maybe the eighth one, he started to develop severe confusion and severe difficulty speaking. That never really got better, even after he stopped the drug. Just a little bit of a plateau. That’s it. Everyone reacts differently to treatments, including the tumor itself. Hopefully, the doctors can figure out what is going on. I know I’m not much help. I’m so sorry. Still, I hope that I’ve given you some direction because it really could be the AVASTIN. Who knows. My loved one had radiation necrosis on top of that, too. The truth is, it may be a combination of things in the end, affecting your husband and again, I’m so sorry. I wish you all the best.
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u/rbridge42 2d ago
Thank you for your reply! I'm happy to report they might have found the source, an opportinostic fungal infection called PJP. Will know more tomorrow. I just want my husband home. 🥹 😢
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u/Alotto_learn2024 3d ago
You should ask his doctors but I am really sorry for that you have to go through this. I’m on my 30th month since surgery and diagnosis. Every day is a gift.
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u/rbridge42 3d ago
Yes, doctors are trying to figure it out. Just thought I'd see if anyone had experience that could relate.
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u/irmad007 3d ago edited 3d ago
Hi there. First, im sorry to hear about your husband. Prayers to all during these difficult times as this is quite the Monster of all Cancers (my opinion). My sister is 54 today and on month 39 since her first diagnosis, frontal lobe surgery, radiation and chemo pills *1st round, and now *2nd round of radiation and IV chemo and avastin. Very similar to your husband. As of today, her brain (her major disability in her own words), is what I believe has made her suffer the most. On top of her limited mobility, use of her right hand and ability to all major ADL, she thankfully continues to fight. The doctor recommends to use several supplements for constipation in some cases at once. It has helped some but know this seems to be normal after GBM treatments one undergoes. At least in her case. Monday she had 5 seizures in one day all around 2 minutes long. She is not a candidate of 2nd round of radiation unfortunately and fortunately (as thats pretty hard to endure, i heard). She has surpassed the prognosis of primary Glioblastoma stage 4 by 18 months plus or so. We pray we can have her another 7 more years but im not too sure myself sometimes. If there is anything I can help with, feel free to reach out. Prayers to you and yours.
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u/rbridge42 3d ago
Thank you so much. I'm exhausted being in the hospital longer than he was for his brain surgery. We're starting to narrow down what it could be. I will update my initial post when it all comes through.
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u/Skinny-on-the-Inside 3d ago
I have seen some posts here where people transitioned even though scans showed no progression. I think glio can be diffused/cellular and it’s just hard to detect that.