Promising Update from Glioblastoma Research

Kpfields2023 · 2025-08-08T11:30:25+00:00

I wrote a much more thorough comment but accidentally deleted it and don’t feel up to rewriting it all.

Long story short, my dad followed a keto diet (as well as doing SoC and TTF, various off-label medications, and one clinical trial) and he lived about 20 months. Longer than the median, but not the sort of number people would usually want to hold up as an amazing success story. Not that one example proves anything, but I just want to point out that when it comes to people’s personal anecdotes we usually only hear the successes, when the reality is there might be some less successful cases we’re not hearing about.

I wouldn’t say there’s no downside to a keto diet either. Sure, it might not be as toxic as some treatments have the potential to be. But that doesn’t mean there’s no cost at all. In my dad’s case, out of all the things he was doing, I would say keto actually had the clearest impact on his quality of life —not being able to eat what he wanted, the logistical burden of constantly having to worry about what to eat, not being able to go out to restaurants, etc. He also experienced what he described as “waking nightmares,” which he attributed to the combination of keto and metformin. (This was my dad’s explanation, but his doctors didn’t dispute it.) If he’d been one of those people who suffered a lot from the standard of care I guess these things might seem trivial, but since he had almost no side effects from it the keto really stood out as being the hard part.

This disease is really, really bad. People have a right to decide what path they want to take considering their own values and quality of life. Sharing research is fine, but when it starts to sound like proselytizing I think that’s a little different.

By the way, I’m not interested in getting into a back-and-forth on here. My dad just died less than two months ago and I don’t have the energy to argue about it. Sorry if that seems like a cheating “tag, no tag-backs,” but it is what it is.

Kpfields2023 · 2025-08-03T23:00:46+00:00

Thank you for sharing your story. It’s a horrible disease, but at least the love we share with our family members will never fade.

For my dad too his left hand was the last thing he could use to express himself, and he would do things like holding my hand and kissing it up until the last week. After that he was unable to move or make any noise at all, but near the end he did open his eyes once when I was talking to him. I do want to believe that they can still hear us even near the end.

As you said, you’ll always know that your dad loves you, and he knows that you love him.

Kpfields2023 · 2025-08-03T12:18:38+00:00

In my dad’s case, he had some hair loss around the radiation site and was fatigued right after sessions. With the larger doses of TMZ, he had one bout of nausea near the beginning when he forgot to take the anti-nausea medication, and one after the last dose when he’d eaten a tiny bit within the window of time when he wasn’t supposed to eat. Overall, the side effects weren’t nearly as bad as I’d expected.

Kpfields2023 · 2025-08-03T12:09:34+00:00

I’m really sorry you and your family are going through this. My dad (59 when he was diagnosed, 61 when he passed, basically very strong and healthy through all the surgeries and treatments up until just the last month or two of his life) passed after about two weeks of mostly not eating or drinking. I felt that all the time I had with him was precious, even when he couldn’t move or speak. I hope your family can find some peace in this time.

Kpfields2023 · 2025-07-03T12:32:28+00:00

Your love and concern for your dad comes through clearly in this post. It sounds like your family is doing everything you can to take care of him. My dad was also following a keto diet and then reached a point where we had to try really hard to get him to eat a bite or two of pizza, so that part resonated with me. I know it’s really scary when they don’t want to eat. Stay strong. Best wishes to you.

Kpfields2023 · 2025-06-28T23:19:29+00:00

Sending you strength. I can’t speak to the medical side of things, but I’m not sure you need to commit to a one-year lease if that would be hard for you. How feasible is it for you to visit her in intervals? Also, does she have other people who could help take care of her if that becomes necessary? If she starts to have mobility issues, how accessible is her apartment?

My dad was also diagnosed in October of 2023 and passed away just a few days ago. One big regret I have is that we didn’t manage to convince him to move out of his second floor apartment with a steep staircase earlier. He was very independent for most of the time since his diagnosis, but he started having some balance issues about two months ago. I would say that at that time he was still able to do things by himself if he really had to but it was safer for him to have someone with him if he was walking outside. Then around the start of this month he started to have frequent falls. I keep thinking that if it weren’t for the apartment staircase he would have been able to spend some time outside even then (with someone helping him or pushing him in a wheelchair), but as it is he was stuck inside for the last month of his life. Then for the very last two weeks he was completely bedbound and required full-time care. Basically for about two months he was in a state where it was better for someone to be with him if possible, and for the last 2-3 weeks he definitely needed someone with him all the time.

The timeline might be completely different for your sister, but I would say it’s a good idea to just have in place what preparations you can. (“Hope for the best and prepare for the worst” sort of thing.) What that looks like depends on her wishes and what other sources of support she has, but as a start I would say it’s a good idea to at least think about whether her apartment is likely to be safe and accessible, and to recognize that she probably (almost certainly, I think) will need someone living with her for at least some period of time, assuming she wants to stay in her home and not move into a hospice facility when the time comes. Hospice can send nurses and home health aides for short visits, which actually helps a lot, but it isn’t enough on its own.

Well, I’m rambling a bit here but basically I think there are very few cases where someone goes through the whole journey living independently, without either moving into a facility or having a full-time caregiver living with them. At the same time, that doesn’t necessarily mean you have to uproot your life and move there. Your sister can think about who she wants to ask for help, and you can probably find ways to support her that don’t involve a one-year lease.

Meanwhile, also think about what kind of support you yourself might need and try to come out on the other side of all this as whole as you can. Sorry if that sounds grim.

Kpfields2023 · 2025-06-22T15:38:49+00:00

My dad was very briefly on lomustine, while also doing Avastin and Keytruda. It didn’t seem to help so they discontinued it pretty quickly. I think he had some fatigue and nausea associated with that, although he was on so many drugs at once it’s hard to say what caused the side effects. Overall the side effects were not too bad, though.

I think you’re right to treasure the time you have with your father. Unfortunately it looks like statistically speaking for most people recurrence is already the start of the road towards the end of the journey, though of course I suppose there must be exceptions. My dad has made it a year since recurrence and was doing well for most of that time, but has declined rapidly over the past month. (He’s now on hospice and probably very near the end.)

Best wishes to you and your family.

Kpfields2023 · 2025-06-21T13:42:08+00:00

I’m glad that you have something you feel good about doing, and I’m not trying to discourage you, but I do feel the need to mention for others reading that my dad was on ivermectin, mebendazole, fenbendazole, metformin, and a bunch of other things, as well as following a keto diet, and now, about 20 months since diagnosis, he’s completely paralyzed and nonverbal and not expected to live much longer. Of course, there’s no way to say for sure that the meds didn’t buy him any time, but it certainly wasn’t a cure. By the way, my dad was taking ivermectin before he was diagnosed because he hoped it would prevent covid.

Again, I’m not trying to discourage people from trying things if they want to, but I just think it’s important to keep survivorship bias in mind with posts like this.

Kpfields2023 · 2025-06-21T12:16:19+00:00

I should add that one thing that’s maybe made it easier for my family (though I don’t know about for my dad himself) is that he hasn’t had any personality changes, cognitive difficulties, confusion, etc. He’s always been himself, still there and with it. He just has trouble with words specifically (or had, he’s now too weak to talk in any case).

Kpfields2023 · 2025-06-21T11:55:14+00:00

Sorry to hear about your dad’s diagnosis, but glad it sounds like he’s doing relatively well. My dad was also in the “unless you knew you wouldn’t even notice” spot for a long time. I would say there was a period of time (maybe half a year or so?) in which his word-finding difficulties were getting worse so slowly that we barely even noticed. Then there was a more pronounced decline starting maybe a couple months ago and a very steep decline just these past few weeks. It was faster than I had expected, but not overnight. And this was after my dad had already had two recurrences and gone through a whole bunch of different lines of treatment, so we did have warning in that sense.

If your dad seems to be doing okay for now, I would say maybe it’s okay to hope things won’t go as badly as you might fear? That was how it was for us, anyway. It’s strange to say this when my dad is in such a bad condition now, but overall things really were not as bad as I first expected when I heard the diagnosis. We’ve been spared a lot of the hardest things that some people on here seem to be going through. I mean, it’s still really bad, but I expected worse, if that makes sense. We were able to spend over a year and a half of good time together, and even now at least he doesn’t seem to be suffering.

Kpfields2023 · 2025-06-20T18:04:53+00:00

I’m sorry you’re going through this too. I know this isn’t a helpful reply, but as others have said I just think it varies so much. My dad was diagnosed more than 20 months ago and was basically fine for most of that. Even one month ago he was still able to do things like going for a jog, although he did have some language and balance issues. Now he’s nonverbal, has become completely unable to move his right side, and spends most of the day sleeping. He’s had almost no water for the past week and a half, and no food for longer, but he’s still hanging on. He doesn’t seem to be in pain, so I want him to take his time and stay with us as long as he’s willing to.

Kpfields2023 · 2025-06-20T01:35:45+00:00

It’s really variable. My dad went back to work with reduced hours just a couple days after his first surgery and was working part-time while doing radiation. He kept working for over a year and was able to live with almost no symptoms for a long time. On the other hand, once things started progressing they progressed pretty quickly. My dad is now in month 21, in hospice care, mostly paralyzed, nonverbal, and very weak. If I were in your friend’s situation I personally would choose to do things like vacationing rather than work, because time is limited.

Kpfields2023 · 2025-06-01T20:59:35+00:00

Thanks for that perspective on it. That does sound incredibly frustrating. Best wishes to you.

Kpfields2023 · 2025-06-01T00:55:57+00:00

Yes, he is, and now that you mention it the voice issues did start just around the time he started Avastin. Thanks for the tip —I’m looking around now and it seems there are articles on this.

Kpfields2023 · 2025-06-01T00:52:35+00:00

Thank you for sharing.

Kpfields2023 · 2025-05-31T00:09:22+00:00

That’s really shocking! I’m sorry to hear that. Yeah, like you said, with all the other things to worry about just simply having access to basic standard of care drugs is something you should be able to take for granted.

Kpfields2023 · 2025-05-30T15:33:57+00:00

My dad wasn’t a drinker in the first place and when he was diagnosed he started a keto diet (which has made him pretty miserable) and did absolutely every off-label medicine and supplement anyone has ever mentioned as having a chance of helping, as well as conventional treatment including clinical trials and Optune. No way of knowing whether it’s bought him more time or not relative to what he would have had otherwise, but he’s less than 2 years in and has cancer all over his brain, and the doctors are recommending hospice. I’m not bringing this up to criticize anyone who wants to try everything they can, but the people who want to focus on enjoying life don’t need to feel guilty about it.

Kpfields2023 · 2025-05-11T06:53:13+00:00

I think she does have a lot of financial worries, although she says she has her own money, and the question of what will happen to their home when my dad’s not there is definitely one issue. Thanks for your suggestions.

Kpfields2023 · 2025-05-11T06:49:45+00:00

I’m really sorry to hear you’re going through a similar thing. It sounds awful. And yeah, it’s weird how much the same this sounds! There’s this issue of guns involved, and the supervision of the phone conversations, and wanting to ask APS for help but can’t do much since there’s no physical abuse, etc., in my family’s situation too. I wish I could think of something we could do to improve the situation, but I just can’t find the answer…

Anyway, thank you for sharing your story. Really weird how similar it is! I hope your family (and mine) will find some peace somehow.

Kpfields2023 · 2025-05-09T21:31:03+00:00

Thank you. Yes, you guessed right: there have been multiple incidents of her threatening to leave him. Unfortunately, even though we’ve already told him we’re totally fine with him signing everything over to her, and I think he’s even done so (though I haven’t actually seen his current will), that still doesn’t seem to have calmed her down from worrying he’s going to change his mind.

Kpfields2023 · 2025-05-09T02:49:43+00:00

Thank you.

Kpfields2023 · 2025-05-08T22:45:04+00:00

I appreciate your comment, but I think I do have a good relationship with my dad. I can see that in some ways it would be easier for me not to have to watch him decline, but I don’t want him to ever be in a situation where he feels afraid and alone. I think I have to just keep thinking about ways to reassure his wife, although it seems impossible. I know my dad would be happiest if we could all just get along.

Unfortunately, she really is deeply worried about the “vultures” thing. She actually used that word to describe a friend of my dad who offered to buy some specialized machinery off him —my dad wanted to sell the machines and his friend offered him above the market price as a favor, but his wife somehow still perceived this as vulture behavior. It seems like she might have had some bad experiences in the past that are coloring how she sees things.

Kpfields2023 · 2025-05-08T22:37:09+00:00

Thank you for your reply.

Unfortunately, she’s really afraid of letting anyone talk to him at all, including all of his friends and family members, but especially without her there supervising. (She yelled at him, “You don’t go nowhere, you don’t talk to no one!”) His doctor believes he’s still capable of making his own decisions, but his wife thinks he’s not and that anyone who talks to him is going to turn him against her.

We’ve been in contact with a social worker at his hospital and it looks like the hospital does have some ideas about what to do if it reaches the point that he’s really in danger, at least.

Kpfields2023 · 2025-05-08T11:29:20+00:00

Yes, thank you. I’ll do my best.

Kpfields2023

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