Resources and support for families dealing with cancer and serious illness

Nancy Hernandez43 said:Angela Wright - how are you holding up? I see you posting a lot of advice lately. Sending you strength during these times.

I'm hanging in there😳. Being able to offer someone else some guidance actually helps me get through. Sometimes it feels a little selfish, honestly, like I'm just doing it to feel better myself😳

Angela Wright said:Is there any chance the tumor could shrink enough to make Gamma Knife surgery an option? Have you looked into that?

Look, I have to be blunt with you. I’m a surgeon by profession. I know the official medical protocols inside and out, both here in the States and internationally. Glioblastoma is the most aggressive type of tumor out there. You don't apply the "shrink it then cut it" logic here. If you can manage to quiet it down at all, you take the win.
In my mother's case, the tumor has already overtaken almost the entire hemisphere along with the ventricle. As far as the doctors are concerned, she's already been written off.
Everything matters—genetic markers, the patient's age, even their will to live.
We haven't done a CT scan in nearly five months.
She has right-side hemiplegia, and frankly, I refuse to drag her all over town just for some CT results that I can already imagine.
We'll just have to see how things play out.

Christian Wood63 said:Look, I’m a surgeon by trade. I know the official medical stances inside and out, whether we're talking about domestic standards or how things are handled overseas. Glioblastoma is the most aggressive tumor out there; you can't just apply the standard "cut it out and reduce the mass" logic. At this stage, the goal is simply to keep it quiet if you possibly can.
In my mother's case, it took over almost an entire hemisphere along with the ventricle, so doctors basically wrote her off a long time ago.
Everything matters—genetic profile, age, and even the patient's will to live.
We haven't had her undergo a CT scan in nearly five months.
She has right-side hemiplegia, and frankly, I have no intention of dragging her all over town just for some CT results that I can already pretty much visualize.
We'll just have to see what happens.

You know, sometimes I get the feeling that those of you in the medical profession are actually in a much worse position than the rest of us. You're constantly confronted with these medical "facts" that are really just statistical observations. Because of that, people often get written off prematurely, and then they end up living through the impossible.
There's a woman living next door to me who was diagnosed with glioblastoma seven years ago. I don't think I've ever seen a statistic that accounts for such a "long" fight.
I honestly think it's just a matter of waiting until some big pharmaceutical giant like Pfizer or Merck finally lines up all the perfect conditions to launch a new treatment. In this situation, buying time is everything. According to every prediction, my mother should have passed away already, yet she's still fighting. She's in a vegetative state, sure, but I'm still holding onto the hope that she makes it at least until the end of the year, when I expect a new drug to hit clinical use here in the States.

For Anaxy... here’s the recipe
Finally got the text from my buddy via SMS. Here is the verbatim message: "
"Look, man, if you buy that processed gas, it doesn't work—and you can't even find the good stuff around here anyway. But if you get the pure stuff from ExxonMobil, it actually works.

You run it through nine layers of gauze. Take one coffee spoon every two hours before you get out of bed for a month. Then take a fifteen-day break.

In the second month, take it for fifteen days, then pause for ten. In the third month, take it for ten days, then a one-day break, then another ten-day break.

After that, just take it whenever you feel like it. Once you've finished a dose, it’s best to lie down for two hours without drinking anything at all.

If you can't manage that, well, it tastes terrible, so just stick to small sips. Don't drink soda!

Best,
🙂

Angela Wright said:that a new medication is expected to be cleared for clinical use here by the end of the year.

Which drug are you talking about??

Anonymous said:What medicine is that??

I haven't found out the name yet. I'm working on it.

Christian Wood63 said:Does anyone have the recipe for Anaxy?
So, my buddy finally sent me that text he promised. Here’s exactly what it said: ""
Look, if you buy that processed gas, it’s just going to gunk up your engine—it doesn't have any real cleaning power, and honestly, you can't even find it around here. If you want something that actually cleans out the system, just stick with ExxonMobil.

It’s been nine days of this. I’ve been taking a teaspoon of coffee about two hours before getting out of bed every single day for a month. Then comes a fifteen-day break, and then...

So, here’s how the schedule looks for the second month: you take 15 days of medication, followed by a 10-day break. Then, during the third month, you go back to taking it for 10 days, followed by a 10-day break, and then another 10-day pause.

He can do it whenever he feels like it. But once he’s done? It’s probably a good idea to have him lie down for about two hours and stay off the fluids for a bit.

If it tastes like garbage, don't force it. One sip is enough to know—after two, you're just punishing yourself. Just grab a Coke instead.

Hey there.
🙂

If things start heading toward vomiting, just stop immediately. Don't try to push through it or force it—just cut it short and call it a day.

Has anyone here actually tried combining flaxseed with fresh cheese?

bluewalker30 said:Has anyone actually tried mixing flaxseed with fresh cheese?

Hey! So, my mom and I used to love mixing flaxseed with some good old cow's milk cheese, and honestly, it’s delicious—we played around with both savory and sweet versions depending on our mood! Personally, I usually go for a breakfast vibe where I toss in some raisins, almonds, and a little drizzle of honey. My mom used to have it every single day for a while, though she hasn't been feeling it lately and has moved on to other things, you know how those cravings go! As for the actual health benefits, I'm no doctor, so I can't say for sure, but people always say it's super healthy, so I figure it can't hurt to give it a shot!

Carol Sanchez2 said:Hey, my mom and I used to eat flaxseed and cottage cheese together. It’s actually pretty tasty—we’d make it both savory and sweet. Personally, I usually have it for breakfast by tossing in some raisins, almonds, and honey. My mom used to eat it every single day, though she’s moved on from it lately since she just doesn't crave it anymore. I can't say for sure what the actual health benefits are, but people claim it's good for you, so it might help.

I’ve tried starting this a few times, but I ended up breaking out in such a nasty rash that I had to head straight to the ER. Has anyone else dealt with something like that? I'm torn on whether it's even worth trying again.

bluewalker30 said:I tried starting this a few times, but I ended up breaking out in such a bad rash all over my body that I actually had to head to the ER. I'm really wondering if this happens to anyone else? I can't decide if it's worth trying one more time or not.

Oh boy, honestly, I wouldn't even think about giving it another shot if I knew for sure it was going to cause a rash like that! That sounds so strange and scary...

...just wanted to drop in, say hello, and wish you all the very best...

...and while I have your attention, a quick reminder that the Relay For Life is coming up soon—it’s scheduled for September 16th, 2007, over at Central Park starting at 4:00 PM...

also, if you're looking to pick up some sponsored donations for the Relay For Life, those will be available on September 8th (between 11:00 AM and 2:00 PM) right outside Charlie's cafe in Washington, D.C....

We'll be heading out to the run ourselves, so perhaps we might actually cross paths there 🙂

bluewalker30 said:I tried starting this a few times, but I ended up breaking out in such a massive rash all over my body that I actually had to go to the ER. I'm wondering if anyone else has dealt with something like that? I can't decide if it's even worth trying again.

Personally, I wouldn't risk it. The only thing I'd suggest is that if you were using the oil version, maybe try switching to the seeds—or vice versa—and just stick to tiny amounts at first. But honestly, if your body isn't having it, it isn't having it.

You don't usually get diarrhea from the oil.
My mom eats this stuff too, though she already gave me the heads-up that we aren't having cottage cheese (again) for dinner tonight.🙄
It doesn't matter much, though; she just mixed some into her yogurt this morning.😁

Has anyone heard of any herbal teas or supplements that can help coat the stomach lining? I'm looking for something to help buffer the effects of chemo so it isn't so hard on the stomach. This is really urgent because my aunt started her second round of Temodar today, and she’s already thrown up 7 or 8 times. She can't even keep water down without feeling sick... we tried giving her some popcorn and peppermint tea, but she ended up throwing that back up too. 😢

Anonymous said:Has anyone heard of any tea or herbal capsules that can coat the stomach lining to help mitigate the damage from chemo? This is urgent. My aunt started her second cycle of Temodar today and she’s already thrown up 7 or 8 times. She can't even keep water down without feeling sick... we tried popcorn and peppermint tea, but she threw those up too. 😢

She needs an IV antiemetic about a minute before the Temodar hits—something like Ondansetron or Granisetron. Avossa, Ondansetron, Kytril, or whatever the specific brand names are these days.
Honestly, nothing else is going to help nearly as much as that.
It actually works.

Christian Wood63 said:Give them an IV antiemetic—something like Ondansetron, Granisetron, Avossa, Kytril, or whatever they call it these days—about a minute before they take the Temodar.
Honestly, nothing else is going to hit the mark quite like that.
It actually works.

That’s easier said than done here. In our setup, people take their Temodar at home about an hour before radiation starts (while they're still being treated), and then they just stay home when they're strictly on the Temodar. Patients fighting glioblastoma end up acting more like outpatient clinic visitors who just swing by for blood work right before and after a Temodar cycle finishes.

@wickedangel
You could try crushed flaxseeds mixed into a glass of water and letting it sit for a few hours. It turns into this kind of mucilage you drink that basically coats the lining of your stomach and intestines.

Angela Wright said:It’s hard to pull off because here in the States, people take their Temodar at home an hour before radiation—while they're still undergoing treatment—and then they just stay home when they're only on the Temodar. Glioblastoma patients are basically treated like outpatient clinic visitors who only show up for blood work right before and after a Temodar cycle finishes.

@wickedangel
You might want to try using crushed flaxseeds. Mix them into a glass of water and let them sit for a few hours. It creates this mucilage that you drink, which works to coat the lining of your stomach and intestines.

Maybe it's just easier for me because of the nature of my job,
but I would suggest doing this at home without needing any intense training with a thin needle. You'll run into far fewer issues. Believe me, you'll forget all about the nausea while taking Temodar.

Christian Wood63 said:maybe it’s just easier for me because of the line of work I’m in,
but my advice would be to handle this at home with some basic training using a fine needle; you'll run into way fewer issues, and trust me, once you start taking Temodar, you won't even remember what nausea feels like.

Easier said than done. Man, if you only knew the absolute nightmare I went through just trying to get permission to administer dexamethasone injections at home. I had the stomach for it, but honestly, digging around for a vein in someone's arm?😳 To be perfectly blunt, I wouldn't dare😱 . Maybe I could talk my home health nurse into it now—if she were willing to just set up a PICC line for those five days of therapy to make getting the meds easier—since we've become friends, but even then, how we'd actually get the medication is still a huge question mark. Our local primary care doctors are in a state of total chaos when it comes to administering anything. They have to have a written directive from a specialist for everything, otherwise Medicare comes breathing down their necks, threatening their paychecks and questioning their competency. Meanwhile, that same Medicare "competently" rejects specialists' recommendations during committee reviews, not to mention that these committees are often filled with doctors who haven't seen an active patient in years. We couldn't even get the dexamethasone vials; we ended up having to buy them out-of-pocket at private pharmacies.👎

Hey everyone, I've been lurking here for quite a while—just curious, where's Dina?

Ashley Bishop32 said:Hey everyone, I've been lurking here for a while and was wondering where Diana dear has been?

She popped up once or twice recently. She’s probably just deep in the trenches of another treatment cycle right now. She'll resurface once the dust settles. Honestly, that woman is an absolute force of nature.👍