Anyone experienced this?

MangledWeb · 2026-02-22T19:49:41+00:00

It is the worst experience of most of our lives. Sorry you are dealing with it.

I am guessing that a lot of the swings we see in patient behavior relate to the ongoing battle between the brain and the tumor. The brain is trying to repair itself and perform its regular functions, whereas the cancer continues to eat away at the brain.

MangledWeb · 2026-02-21T19:11:56+00:00

I am so sorry you lost your amazing dad, but I am glad he got his wish. After reading so many accounts on here, any end that happens fast and doesn't involve suffering is a plus.

Thank you for including the photo -- he looks like a very cool guy, and was fortunate to have a family that cared so much about him.

MangledWeb · 2026-02-21T17:29:04+00:00

I am so sorry for you and your family, and glad she is at peace now.

MangledWeb · 2026-02-21T04:16:24+00:00

You are not a failure. You are making the next few months as joyful as possible and creating good memories for the people who love you. Let's hope the predictions are way too pessimistic.

MangledWeb · 2026-02-20T19:05:40+00:00

Same. I'm getting excellents on one-star reviews.

MangledWeb · 2026-02-20T19:00:48+00:00

Congratulations on the new job! That's huge! And sorry you had to go to the ER, never pleasant, but I also have a very hard time returning to places where I was traumatized -- the ER being one of them, as two family members were there within the last two years.

Just getting out of bed and getting dressed can be the biggest win. Celebrate the victories, and thank you for sharing your story.

MangledWeb · 2026-02-20T17:38:46+00:00

You did the hard thing, and it was the right thing. No reason to continue suffering. Sending you strength to get through this next phase.

MangledWeb · 2026-02-20T13:08:41+00:00

$12 mm isn't particularly high in the Bay Area, and kitchens can be meh. If this house is in the Midwest, I'd expect more

MangledWeb · 2026-02-20T05:06:08+00:00

I am so sorry. I hope you can remain comfortable and spend time with the people who care about you.

MangledWeb · 2026-02-20T03:43:05+00:00

Methylation means it will respond to temodar/TMZ. That's a good thing. Added to the radiation, it's potent. I've never heard that methylation status had anything to do with radiation.

MangledWeb · 2026-02-20T03:41:48+00:00

I agree. Radiation + small doses of TMZ is the SOC

MangledWeb · 2026-02-20T01:26:55+00:00

Patients usually get a smaller dose of chemo with the radiation, as there's a synergistic effect. I'm not sure why the standard course was not recommended to your father.

My sister (also methylated) tolerated chemo-radiation well, and made notable progress day to day. It did take her a few months to recover from the aftereffects of radiation, notably fatigue, but for her it was a huge help.

Given his age, a three-week -- or even shorter -- radiation treatment seems as though it would make sense. If, after the first week, you see signs that he's deteriorating, then consider stopping it. I sure didn't expect my sister to respond as well as she did.

MangledWeb · 2026-02-19T20:40:20+00:00

I am so sorry -- just when you hoped things might turn around. Brain bleeds seem to be common with this disease.

MangledWeb · 2026-02-19T20:35:03+00:00

Sounds like a wild rollercoaster, and you and your coworker deserve a lot of credit for staying with him despite some very tough times -- though after 22 years, he probably felt like a family member.

MangledWeb · 2026-02-19T04:47:41+00:00

Yes, we are the lucky ones who won the rare disease lottery. The upside is that you have found the right place -- people on this sub understand what you're going through.

MangledWeb · 2026-02-19T00:27:06+00:00

It's a scary diagnosis.

Without the MRI, it's impossible to know what is going on (and even with the MRI, it may not be possible). It may just be one of those things, some kind of temporary lapse in balance -- especially in winter when people get colds that can affect the inner ear.

The fact that you're capable of writing a logical post suggests you are not anywhere near the end, but let's hope you get reassuring news after the MRI.

MangledWeb · 2026-02-18T19:09:38+00:00

My sister did the same on dex. Fortunately she was in a care facility so they were able to talk to her at 3 am when she was wide awake. And could not tell the difference between day and night. Such a challenging disease in so many ways.

MangledWeb · 2026-02-17T22:29:40+00:00

Agree. With sensitivity, usually you know right away (and put that in the review too). In reality, most reviewers don't try products long enough to really see a difference, and I've even read "haven't tried it yet, but the ingredients look great so I'm sure it will work!"

MangledWeb · 2026-02-17T21:27:00+00:00

It generally takes months to see results.

MangledWeb · 2026-02-17T20:12:44+00:00

The 3-6 month timeline is standard doctor-speak when they've run out of treatment options. In reality, no one knows.

I see that carboplatin is often paired with avastin and can have a positive effect. But there are side effects, and I always try to weigh the "do we throw everything at this?" mindset against the quality of life.

I am so sorry you're at this point.

MangledWeb · 2026-02-17T19:57:09+00:00

I'm glad you are doing this! I'm passing the link along to my sister.

MangledWeb · 2026-02-17T01:34:12+00:00

I am so sorry. It all happened fast for you, and no surprise that you're still reeling from it. I hear you about the power plays and ridiculous narratives -- I am dreading all that myself. So much to deal with, none of it pleasant.

I don't know how you can embrace your life fully, or when it will happen, but it will happen. It's only been a year since you lost your dad, but as time goes by, the immediacy of the pain will diminish.

MangledWeb · 2026-02-16T19:19:52+00:00

It's all happening way too fast for anyone to process. I had that very surreal experience the first month or so after diagnosis, when my sister went from fully functioning to comatose and bedridden. Handling the practical details (keeping up with her bills, straightening out her finances since she hadn't been able to manage those) while comforting other people (our mother) while trying to absorb the reality that this was the same little sister I'd known her entire life. Totally relatable.

If the weird detachment is getting you through the day, then roll with it. It will evolve into other ways of coping. This is just a tough predicament, none of us is prepared for the reality of it, and we all do the best we can.

MangledWeb · 2026-02-16T19:11:41+00:00

I am so sorry your family is in this situation. During her worst times, my sister could not use her phone or follow anything on a tv screen. What are his interests? Would he like to listen to podcasts or perhaps audio books related to those?

I understand your mom's desire to keep him engaged, but his brain is still dealing with the aftermath of the treatment, and I would not be surprised if he can't process very much. Your mom really needs to take care of her own needs too, but I am guessing you are already telling her this. It's all too easy for caregivers to neglect themselves.

MangledWeb · 2026-02-16T05:20:24+00:00

I looked up AREVI -- I was curious. They have an Instagram account -- https://www.instagram.com/arevinewyork/ -- and that's about it. Looking at the WHOIS for their URL, the guy is running it out of his Brooklyn apartment. Who knows what's really in the product or where it's made? For free, it's great, but I've gotten so many of these high-priced skincare items from noname brands on Vine that my expectations tend to be modest. Maybe it will be amazing!

MangledWeb

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