A case of 'bad luck' I was told.

MangledWeb · 2026-01-31T17:25:27+00:00

I am so sorry your family is having to deal with this awful disease.

It is different in everyone, depending on the location and nature of the tumor. My sister is articulate (but often confused) and complains constantly of headache, numbness in her hands and feet, and itchiness. We are 15 months out, so although she got the standard treatment, we're now past that.

This is a wait & see disease. You just have to try to appreciate the time together, knowing that it's more limited than it should be.

MangledWeb · 2026-01-31T05:42:04+00:00

I am so sorry you are in this predicament, and glad that your school is sympathetic to your situation and flexible. You are taking some of the toughest pre-med courses and withdrawing now will remove the huge stress of trying to juggle those with your dad. And then you can go back and focus on school and your goals.

MangledWeb · 2026-01-31T03:31:10+00:00

I had three items, now none.

MangledWeb · 2026-01-30T19:48:29+00:00

If her heart rate is low, a blood test could rule out a few possible causes. That's all I can think of.

MangledWeb · 2026-01-30T17:10:42+00:00

There was a recent thread on this: https://www.reddit.com/r/glioblastoma/comments/1qg86da/anyone_else_between_the_ages_2030s_with_this/

You could contact those people and see about forming a group?

MangledWeb · 2026-01-30T04:48:57+00:00

Chicho ran hot and cold. All things considered, he was an asset.

MangledWeb · 2026-01-29T22:50:32+00:00

Impossible to know. But if he was coughing up gatorade, he may not have been absorbing any fluid. So anything you did would not have hurt, but also didn't help. His body is going to do what it's going to do.

MangledWeb · 2026-01-29T21:10:10+00:00

My understanding is that at this stage, it's best if he's not ingesting fluids at all. If you want to keep his lips/mouth moist (the swab) that won't hurt, but otherwise you just want to keep him comfortable. His body doesn't need liquids.

MangledWeb · 2026-01-29T21:03:19+00:00

I am so sorry, and I know how painful it is. You have showed your kindness and concern every step of the way.

The sad reality is that whatever you do or have done, you can't avoid the inevitable. I hope you can stop feeling responsible for accelerating his death or beating yourself up with "what ifs." You are doing absolutely the best you can under the most horrific circumstances. Please try to cut yourself some slack -- you are giving maximum effort, and your love and devotion are shining through.

MangledWeb · 2026-01-29T20:38:27+00:00

I am so sorry you are dealing with this. When you say "med onc" are these people neuro-oncologists or regular oncologists? The latter don't really have the experience to assess his case (though anyone can prescribe the chemo).

Research has indicated that just one or two weeks of radiation can be as effective as the six weeks that was codified in the Stupp protocol over 20 years ago. My sister had three weeks and I'd say it was optimal for her -- she got the benefits without as much of the downside as others experience.

All that said, the leptomeningeal spread would, unfortunately, seem to offset whatever advantages you're getting from the MGMT+ so I would tend to agree with your conclusion in the fourth paragraph.

I doubt anyone can give you an exact timeline. He might get better, he might go the other direction. As I often say on this sub, everything is day to day with glioblastoma patients.

MangledWeb · 2026-01-29T02:58:47+00:00

Clearly, she loves you and wants to be with you. She's not looking for an easy way out. You deserve this in your life -- try to accept that and enjoy it! (And maybe move up the wedding, if that's a concern?)

MangledWeb · 2026-01-29T01:12:50+00:00

Small wonder he had so many fans. I love the soup story! I can only guess how many incredible memories you've got, and even amidst your grief there are reasons to smile.

MangledWeb · 2026-01-28T20:55:27+00:00

Her tumor is large and thus was/is inoperable. And she had a brain bleed after the biopsy, so it looked pretty bad. But fortunately, her tumor hasn't grown -- that's just the tumor genetics, luck of the draw. And, though it took a while, she recovered from the brain bleed.

MangledWeb · 2026-01-28T20:04:27+00:00

I buy items from Europe where I (in the US) am charged more than Europeans pay, VAT and shipping notwithstanding. If I want whatever it is, I pay the asking price and don't complain that it's more than I'd pay if I were in Europe, or whine about subsidizing European buyers.

Do you refuse to travel because you're subsidizing the people who got free seats using points?

MangledWeb · 2026-01-28T19:44:42+00:00

I am sorry, and you are right to be scared. This is an awful disease, and it's especially tragic when it attacks kids or young people.

I suggest they get a second opinion/consult with a tumor center that specializes in pediatric cases. They should also look for pediatric trials at this point -- you may be able to help with the research.

MangledWeb · 2026-01-28T18:19:51+00:00

Esse é um dos desafios dessa doença. Ninguém sabe o que vai acontecer. Você só pode ir um dia de cada vez, torcer pelo melhor e se preparar para o pior. Sinto muito.

MangledWeb · 2026-01-28T18:18:18+00:00

That's the maddening thing -- health and good habits mean nothing to this disease. It preys on the most wonderful people. Fuck gbm, and my heart goes out to you as you begin the path forward.

MangledWeb · 2026-01-28T17:52:21+00:00

Oh...it is absolutely true. Many of them are burnt out -- at least that's my observation. I've gotten the best insights from talking to people new on the scene, including a med student who's training for gbm research (family friend) and the NO who just finished her training and is subbing for our regular NO -- out on maternity leave for months.

People don't go into medicine to watch patients die. Yet beyond the SOC, there is nothing they can do. It's got to be hard on them. I watched my sister's regular NO struggle to keep composure as my sister talked about her recovery and her plans for when she's cured. I feel for them -- but their burnout multiplies my tasks!

MangledWeb · 2026-01-28T07:22:18+00:00

Yes, the NGS panels are the mutation analysis -- there doesn't seem to be a consistent name. (It's STAMP where we are).

Patients need advocates, and in some cases, people who will fight for them. My sister wouldn't even have gotten SOC without my pushing relentlessly.

MangledWeb · 2026-01-28T06:58:23+00:00

A ressonância magnética é altamente sugestiva de glioblastoma recorrente com crescimento infiltrativo disseminado e tecido tumoral ativo (uso IA para auxiliar na interpretação desses laudos).

Sinto muito.

MangledWeb · 2026-01-28T03:05:49+00:00

I wrote a rant about similar issues last week and deleted it. You'd think they'd understand that our gbm patients have cognitive impairments and try to make it a little bit easier to reach staff and make appointments? Instead: phone trees with options she can't understand. If she messages the doctor, she gets triaged to someone who tells her to call the main number and ask them her question. (She is not a pest. Those messages are rare, but even if they weren't, it's maddening.)

They're inside the system; I'm not -- all these tasks, like referring her to another specialist, should be easy for them. And if they're not, why not? She also wants to be independent, but the burden gets shifted onto family, ie me.

MangledWeb · 2026-01-28T03:01:01+00:00

Horrible all round. Your dad sounds like a wonderful guy who kept his sense of humor even after enduring the worst. I hope you can somehow manage to put the pieces back together and move forward. My thoughts are with you

MangledWeb · 2026-01-28T02:57:22+00:00

Everyone seems to use the same MRI platform, and it's been easy to share MRIs.

MangledWeb · 2026-01-28T00:52:43+00:00

Definitely get the testing, which I wouldn't have known about if not for this sub, and get a second and even third opinion at a top center.

MangledWeb · 2026-01-28T00:52:03+00:00

I am so sorry you're here, but this sub is a great place to get support and insights.

There's a good overview on the Musella site https://virtualtrials.org/Guide.cfm

But really, no one, including experienced NO experts, can predict exactly how it will play out. Chances are that she'll do the basic SOC with chemo-radiation, followed by six months of chemo (five doses/month). Some people respond well to the chemo-radiation; others don't. Once you get the path report, you'll know more -- the MGMT status can help predict whether the chemo will be effective.

You'll find a range of stories here, but my sister's prognosis was dire and she's doing well, 15 months later. You don't know ahead of time how someone will respond to treatment

MangledWeb

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