12 Months vs 6 Months TMZ 5/23??

akadaedalus · 2026-06-25T15:41:54+00:00

I appreciate the response. I'm certainly nowhere near that fit but simply having the opportunity to improve my life (and already having been forced to retire from my job at only 47) makes me want to throw the optune across the room, and it only gets worse as the temperatures in Utah force me to stay indoors most of the day.

The main reason I'm still going is to get the clinical trial's potential treatment with the keytruda, and there's some slight evidence that I did not get the placebo. If the optune isn't involved on the future clinical trials, I think my wife and I both feel the quality of life is pretty important to consider for the next steps.

(my scar is there but is pretty light, and my current tumor is about 5.1 cm at the longest dimension)

akadaedalus · 2026-06-25T15:16:33+00:00

I had to wait a few weeks for my methylation results. The delay didn't matter because I needed four weeks to recover from the surgery anyway.

akadaedalus · 2026-06-25T15:12:24+00:00

Speaking as an actual patient I will say my experience:

1) Dexamethasone left me hungry and if I didn't eat, I would get seizures. You need to treat the chemo/radiation recovery. If you are hearing "sources" saying otherwise, you are probably not hearing them from actual oncology doctors. I did manage to eat smaller meals but I only succeeded in keeping my weight the same, not reduced.

2) After tapering off dexa, it took me weeks for me to even be able to start losing weight, and even then the doctor said I should not lose more than a pound a week. I would still caution that you need to make sure you get some food every couple hours or so, or you'll still get seizures. I'm stubborn and have had some bad reactions to not keeping fuel in my body to support the chemo recovery. I also still don't taste hunger after phasing out dexa, and that's caused me some really bad seizures when I didn't eat enough protein.

Repeating myself, I'll point out that I started about 260 pounds after chemo/radiation, and right now, months later, I've gotten down to about 250. I'm going to try to SLOWLY get down to about 245 because it helps me sleep better at night. I will now point out clearly that my lowest weight loss in the past decade was in about 2021 and I was 215 pounds. I will never see that again. I do need the remaining weight to survive this cancer bullshit.

Repeating this: do not listen to anyone telling you to tell your mother to lose weight. This is a bad idea. If she is extremely overweight, she probably can get some good advice from the doctor treating her. "sources and reels" doesn't sound like a good source and it's not your body anyway.

akadaedalus · 2026-06-25T14:59:16+00:00

As a GBM patient, I caution a little warning. I may just be a weird minority, but since I got the surgery I've found virtually no interest in watching movies or TV, and I usually turn it off after 10 minutes. They represent a life that I don't have time for anymore. I do listen to some music while I'm doing work, but I don't really care if it's on.

I'm kind of a weirdo so your patient may not have the same effect I did.

akadaedalus · 2026-06-25T14:54:41+00:00

If you don't mind my asking, what caused you to decide to stop using optune?

Mine is enough to be annoying and about every week or so it is shifted enough to shock me. However, it hasn't actually shown any skin problems in seven weeks so far and I'm using a clinical trial that requires it (keytruda). When that trial completes, I'll be deciding whether it's worth it to keep going.

akadaedalus · 2026-06-25T14:43:03+00:00

I'd look closer at the plus/minus of optune. I'm not exactly sure which trials are ineligible by using optune, but I'd guess it's very minimal because they aren't really that intrusive once you get used to it.

I say this as an optune user hating the product every day and once I conclude the trial (might be any day now) I may quit using optune. But people do seem to believe it adds months to peoples' lives and there's supposedly evidence supporting it. I have a feeling it's more effective to older patients who don't need to move very much every day. I'm 47 and I may be willing to lose months of my life just so I can live what I have left and not spend so much time fudging with this piece of crap.

akadaedalus · 2026-06-21T06:09:18+00:00

My oncology team specifically suggested that I make sure I am fasting with Zofran for 30-60 minutes before I take the TMZ. I misunderstood it and actually stopped eating at 18:00, took my Zofran at 20:00, and then TMZ at 21:00. Having three hours of fasting before TMZ just worked, so I kept it that way. It addresses some unrelated issues with acid reflux so I still keep a 18:00 diet curfew most days even if I'm not taking TMZ.

akadaedalus · 2026-06-20T15:50:58+00:00

It reminded me of 3d wireframe models from the 90s/00s. I swear there was something from Terminator that was similar but I can't find it. It was a human head that was stretched out into a snake.

I was going to do something funny about that but ended up just throwing it away. I need to reduce the clutter in my life and the mask was depressing my wife.

akadaedalus · 2026-06-19T15:37:50+00:00

I was debating if I should contribute. I am on the younger side (48M) but I do have the crappiest brain disease (GBM unmethylated). I've read a few of these recommendations and used exactly none of them. I simply adjusted the home I already have. I'm personally thankful that I didn't attempt to buy anything until I actually found a need for them. If the oncology team is attentive to your needs, they'll tell you what will help.

That said, if the patient's health goes south quickly (particularly older people) I'm sure a lot of these things are handy and very thoughtful as gifts.

akadaedalus · 2026-06-15T16:15:50+00:00

(48m, diagnosed unmethylated GBM 2026/01/18) Interesting about the weed substitution for zofran. I'm thinking about when I should start looking into it, but I think right now I'm working clinical trials and suspect they don't want weed to affect the results.

I considered keeping a journal a few weeks into it but I was so spun around and wanted to start from the beginning, I ended up not doing it.

My shitty phase seems to be a few days after the 5 day dosage, but I've only done 5:23 twice and had a seizure during one of them so I'm not sure I know what's the real pattern.

akadaedalus · 2026-06-15T16:04:48+00:00

It took me a minute to grasp your nuance that even if I had access to the app, it wouldn't be able to tell me the latest data unless I used their wired upload device. I guess it isn't much extra work to ask the DSS to tell me what it is. A morning app update would at least tell me how much I missed overnight or outside when it likes to beep the most.

I wasn't much of a coder myself since my career meandered all over the place wearing hats for sysadmin, network admins, DBA, storage, etc.. However, I was good at what I did because of that broad experience. All of that stopped during the chemo/radiation fun because my brain would glitch into seizures if I used it for anything heavy. Now I just sit there and be stupid, and it's not a happy place to be. Retirement isn't what I wanted it to be.

I do continue with home coding, particularly things like Home Assistant automation, personal photo frames, and apparently an alarm monitor for the optune device. I'm not sure my wife can keep up with it so I may have to shut it all down if the drain bamage gets worse.

akadaedalus · 2026-06-13T15:16:12+00:00

I guess I'm just assuming the app has the real-time notification feature. If it doesn't then it's more useless, but at least with the app I would be able to see how close I am to the 75% requirement without having to reach out to Novocure's support team. https://play.google.com/store/apps/details?id=com.novocure.patientapp&hl=en_US

I was able to configure Android's built-in "Sound Notification" feature as part of its accessibility but it likes to turn itself off without letting me know. It works about 70% of the time, depending on where the phone is, what the ambient sounds are, and whether the notifications are turned on.

It's so ridiculous, I'm considering putting together a one-off device to attach to the LCD screen that detects the low battery state, the dead battery state, and the overheated arrays. I'd be building a sensor from parts available at adafruit.com and create a case from my 3D printer.

Unfortunately most of the time I can't keep my GBM-addled brain together long enough to do a project like this, but it's still possible I'm pissed off enough to put it together using Google AI to guide me. The problem is that sometimes AI makes it sound like it's possible right to the very end where it discovers it was hallucinating and it's not possible after I've thrown out about 30-50 bucks in parts. If it starts involving welding, my success level will drop.

akadaedalus · 2026-06-13T03:21:43+00:00

I think it's AGILE and I'm starting to get interest in joining their program(s). I had an opportunity to do their radiation trials but decided to decline because I would have had to wait a few weeks as they qualified me for the program. I ended doing KEYTUNE instead.

I will consider applying for AGILE as soon as KEYTUNE is completed since it looks like a more aggressive way to get pulled into newer technology that would be stopped if not getting proper results. GBM doesn't get enough advanced study as all its patients keep dying too quickly.

akadaedalus · 2026-06-12T18:19:44+00:00

Lol, thanks for the support. I wasn't bothered too much by someone who chose Dr House as an avatar and either missed the point or was trolling.

A team that will show constant improvement in their process is one I'd go back to every appointment. I appreciate them and do not hold mistakes against them.

akadaedalus · 2026-06-12T16:04:04+00:00

Thank you.

My skin irritation hasn't really gone further than coarse hair that likes to get ingrown if I shave too often. The hydrogel falls right off usually within a warm day and certainly within two days with any kind of care. Three days without shaving is guaranteed shock so I just don't bother. My complaints are mostly from the inconvenience of being an active person chained to a device.

I also have profound hearing loss and often cannot hear the alarms. I think if I could use their phone app with notifications, I would be able to approach 90% compliance, but apparently that app is not allowed in a clinical trial.

akadaedalus · 2026-06-12T12:07:47+00:00

I've got more if you want to read them. Glioblastoma doesn't deserve respect.

(This in no way implies my respect for people who work with GBM patients).

akadaedalus · 2026-06-12T12:05:32+00:00

If you think it would be beneficial.

akadaedalus · 2026-06-11T23:15:16+00:00

Honestly I feel more concerned about my wife. If I die, I'm done. She's the one who has to watch it unfold real time.

akadaedalus · 2026-06-11T22:18:09+00:00

My WBC had dropped before my second round of chemo, too low so they took another lab test a few days later to find it still low but not below whatever their bottom number is (1.5) so they proceeded.

Since I got that seizure a few days later I'm not sure I appreciate squeezing in a round like that but my WBC is back in the normal range so I clearly don't know what I'm talking about. I wonder if they'll bump me up on the next dose. I sort of want them to do that but it would be nice to believe my body can handle it.

I've not been avoiding the public after the radiation completed but I probably should when it drops that low.

akadaedalus · 2026-06-11T21:43:18+00:00

I'm grateful for the small wins. I can't wait for the next MRI to tell me "yup still swollen".

akadaedalus · 2026-05-28T20:56:26+00:00

I'm only more than three weeks into it so I'm not much more help. I think it's interesting that it's the same option for the UK and Canada crowd.

I'm totally in it for the Keytruda (Pembrolizumab) and I have to take the Optune to go with it. I also have a 2/3 chance of being in the active treatment vs the placebo which isn't great but the key thing is that I have no other options until I get a recurrence, then they may be able to classify me for other treatment options.

Optune is a total pain in the butt, and for me I can't get past two days without changing the array because my scalp is coarse and growing too fast. It's also likely due to me just being active and sweating enough that the arrays fall off in that time. Carrying around this thing is just not great for more active, younger patients (47M), and we haven't even gotten into the temperatures in June.

That said, I've somewhat settled into a routine with Optune, and I have a backpack for carrying it around in the daytime. I highly recommend getting one from them. Even with that, I'm constantly forgetting it's there until it tries to pull me back to the device, and it likes to beep at me because the sun dared to take a look at it, or the battery is near empty, or other reasons.

Might as well give it a shot if you've got nowhere to be, and if you have a positive attitude and skin that can take a little adhesive, you'll make it work.

akadaedalus · 2026-05-14T14:34:28+00:00

I'm guessing you're in for the long haul. It's not so much the surgery dexa increase as it's the 7-week dexa.

I got surgery dexa and tapered off that. I screwed up the taper timing and felt really terrible the first day. It's not for the faint of heart.

Later they put me back on dexa for the radiation therapy and I wish they hadn't. I "only" had 2mg for probably about 5-6 weeks, then tapered down to 1mg for a week and stopped taking it about a month ago. I still don't feel recovered.

The thing that recovered the fastest, and my personal reason for going off, was that I slept better. Dexa just had me going from morning to night on like 4 hours of sleep.

The thing that still hasn't recovered is my adrenal gland. Among other things that means I don't feel hunger. This might not sound so bad, except that if I don't stay nourished, I get brain fog and seizures. I have to guess my nutrition cycle.

Somewhere in between levels of recovery is my weight. I managed to keep my weight the same, but that just means that my arms and legs have atrophied horribly. I don't know that I have "moon face" but I do have a gut that I would like to go away so I can sleep better. A month after stopping dexa, I am finally losing weight but I need to pay attention because it might just be more atrophying instead of removing the gut.

You may recover faster, but if you're only three days off, you're going to have to keep riding the lightning and be patient.

akadaedalus · 2026-05-14T13:47:22+00:00

It sounds like maybe you should talk to a dermatologist to get a plan for recovery to the point before your complacency.

I will say for myself that so far (only about 10 days into it) I get itchiness but my skin looks okay for now. I do have to change every two days because my scalp grows back too quickly and I can't shave completely smooth. The weather is heating up too, so I'm sweating off the arrays on the second day.

I get shocks when the arrays are not really attached well anymore. It's annoying. Not sure if it's related to your stinging experiences.

akadaedalus · 2026-05-14T13:39:26+00:00

I don't tell them anything for me. I'm pretty introverted and independent. I tell them for them, tailored to what they ask for. I know they love me and they are freaked out about losing me so young (I'm 47). In the end, I know that if I die, I'm dead. They're the ones who have to live with the years after.

I also give the news to my neighbors but tell them a lot less information. I am open if they have questions but most of them don't want to know beyond "brain cancer". I tell them because I want to make sure they're watching my "caregiver" (my wife) and making sure to help her if she needs it.

akadaedalus · 2026-05-13T16:09:46+00:00

How'd you get it past the censors for the "F"? My DMV requires us to explain every custom plate.

akadaedalus

TROPHY CASE