Posts by Angela Wright

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.

stormymaker24 said:@Angela Wright—honestly, I think she’s dealing with a yeast infection and a UTI hitting her all at once, which would explain the chaos. Once that starts creeping up on you...

That’s probably the case. Thinking there's any other explanation just feels like a stretch to me.

Hannah Bishop said:I'm wondering if I can drop off a urine sample tomorrow if my last dose of Vagifem was tonight. The burning sensation just won't quit, it's absolutely miserable.

Are you talking about a urine culture?
And why on earth were you treating a bladder infection with vaginal suppositories?😕

I don't think there should be any issue with getting the culture done. While you're waiting on those results, try to take the edge off the pain with some Advil or Motrin.

Anonymous said:What medicine is that??

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

Does anyone have insight into how things work for "adult children" who act as full-time caregivers? For example, I’m currently out of the workforce because I’m providing total care for my mother, who is completely immobile due to severe complications from a brain tumor.

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.

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😳

Christian Wood63 said:My mom is currently on a 100 mg dose, following a 5-day cycle every 28 days.
Let's see how much longer we can hold the line
using antiemetics. She’s handling it okay so far, and we’ve been supplementing with herbs, mushrooms from China, topical aloe, and all sorts of things.
Even though she almost slipped into a coma, she hasn't spoken since May, but she clearly understands everything and knows exactly what's going on... it's only been 6 months so far.
We'll have to see what happens next, but we aren't planning on stopping the Temozolomide after the 6-month mark.
She actually started taking the Temozolomide at the end of May because our family decided to take the initiative ourselves.
.

Is there any chance the tumor could shrink enough to make a Gamma Knife surgery an option? Have you guys looked into that yet?

Amanda Williams64 said:H Sometimes they just lose track of time entirely; if she naps during the afternoon, she wakes up thinking it's already the next day. It's all pretty messy like that.

Yeah, my mom went through the exact same thing. She completely lost her sense of time.

She’s doing really poorly. Her heart just doesn't seem to be pumping like it used to. Her lips have this bluish tint and she's struggling to breathe. Honestly, what can I say? Everything is becoming painfully obvious.😢

Anonymous said:Since we're paying out of pocket for the meds anyway, how would I go about reaching out to oncologists abroad to ask for a second opinion?
Angela Wright, also, does the Temozolomide treatment continue for life, or is it just if there's a relapse?

I honestly don't know, but there’s bound to be a specific protocol in place. Let's be real: Temozolomide is basically a heavy-duty poison, and the real question is how much damage the body and organs can take before they hit a limit. I highly doubt anyone could stay on it for their entire life.
My advice? Follow her lead and Google the top-tier medical centers in the world, then email them your test results along with your inquiry.
The catch is that you can't just walk in and grab Temozolomide; you need a prescription, meaning you need official verification. This isn't like buying Aspirin at a drugstore where they won't ask questions. You have to consider whether the oncologist managing the case will actually agree to write that script. Expect some hurdles.😳

Anonymous said:Thanks for all the feedback. Is it possible to take Temozolomide longer than the standard six-month recommendation (assuming the dosage is gradually tapered down)? There are even 5mg capsules available, which is peanuts compared to the 250mg she’s currently on. Wouldn't it make sense to maintain a tiny maintenance dose just to stop those tumor cells from creeping back?

That actually happens abroad too, but here in the States, they lie to your face by citing Medicare guidelines to claim it can't be done—all because they don't want to waste money on "lost causes."
Vpavi stumbled onto this purely by accident when she sent her husband's medical records over to Houston. Their oncologist there was genuinely baffled, asking how a patient wouldn't be put back on Temozolomide after a relapse, especially since he responded so well to it the first time. They even emailed her the entire protocol for administering the drug. When she took that email straight to the local oncologist and demanded he prescribe the Temozolomide again, she was told Medicare wouldn't cover it. So, she ended up paying out of pocket—handing the cash to the hospital so they would buy the meds themselves. She had to write a formal petition to the head of the clinic just to get the doctor permission to treat a recurrence, and by the time all that red tape cleared, a massive amount of precious time had been wasted. Her husband fell into a coma and passed away.

Timothy Martinez7 said:Hey everyone,
I honestly don't know what to say... reading through your posts makes me want to cry, but at the same time, I can't help but smile seeing how much grit you all have and how hard you're fighting... some of you are fighting for yourselves, while others are doing it for the people they love...
In a way, I feel like I belong here too... my mom passed away from cancer seven years ago... we fought that battle for over a year and a half... even now, I still look at photos of her—she was a total lioness, a true fighter—and see her fading away...
I miss her terribly... some days hit harder than others... it’s especially tough because I don't have any family left, just my grandma...
But I just wanted to tell you all to keep pushing and stay strong... and please, make sure to tell your loved ones you love them every single day, and don't sweat the small stuff.... trust me, none of it matters in the end...
I'm sorry that everything feels so disconnected right now and that I can't offer some brilliant piece of advice that would actually fix things for you... I just wanted you to know that you aren't alone...
😘

Don't apologize for feeling disconnected; everything is tied together when you consider everything you've been through.
I know how heavy this is, but in your own way, you're living proof that no matter what happens, life keeps moving forward, even after we lose our closest people.
Hang in there. I truly hope that someday soon you'll build a big, happy family filled with kids' laughter and joy. That's the best way you could ever honor your mother's memory.
Love ya😘

Honestly, you’re better off just handling this at home where it’s quiet. If the whole thing with transporting a urine sample is what’s stressing you out, just head to a CVS or Walgreens. You can pick up sterile specimen cups for a urine culture for about $0.67. They’re super easy to use since they come with lids already attached.

mellowraven32 said:If there were an infection, it would hurt. What happens is the sebaceous gland duct gets blocked, things build up inside, and you end up with a movable, round lump under the skin. That's not an infection. Once it actually gets infected, then you'll feel the pain and need to head down to

Just so we’re clear here: you’re talking about an infected oil gland, not some systemic infection manifesting through swollen lymph nodes.

I think you’ll find some clear explanations if you check out this link:
http://www.leukaemia.org.au/web/reso...a_croatian.pdf
The correct term should be chronic lymphocytic leukemia (CLL).
Since this particular type of leukemia progresses so slowly, people can often live quite long lives, sometimes even without needing active treatment.
Look, cancer is a massive ocean of misery, but your mom actually caught a much smaller wave. She needs to focus everything on her quality of life—eating clean and doing whatever she can to boost her immune system. We've covered this extensively on the forum already.

Taylor Howard36 said:But what if they don't find any specific cause or trigger, even if there’s an underlying inflammation present?

It's highly unlikely your bloodwork wouldn't flag some kind of inflammation. It’s more probable that either your levels are just naturally baseline high, or these things only flare up when your immune system takes a hit. That being said, that isn't an excuse for people who haven't bothered to get checked out to claim they don't know why it's happening.

Those lumps you're feeling in your groin or under your arms aren't always just inflamed hair follicles; they can be swollen lymph nodes triggered by some underlying inflammatory process in your body. Personally, I wouldn't waste time overanalyzing or debating the "what ifs" if it’s causing me this much anxiety. I'd just head straight to my doctor. If there's an infection or inflammation at play, you need to get it identified immediately.

jadepuma662 said:Hi everyone

After running all the tests down in San Diego, my mom (71) just got diagnosed with TM Klatskin (bile duct cancer—Klatskin... before finding this forum, I was browsing cholangiocarcinoma.org and http://www.cancercompass.com). The doctor in San Diego scheduled her surgery at Mercury Hospital in Chicago, which I’m honestly not feeling great about (I just drove back from Chicago five hours ago). Does anyone know which hospital is actually the best for this specific case? Am I allowed to demand she be treated somewhere else instead of Mercury? Also... can't this kind of surgery be done in Miami (which would be just as good or better) since it's way closer for me to travel to? Please help, I need an answer fast... the surgery is set for Monday.
Thanks in advance

I have to admit, I haven't heard of this specific type of carcinoma before. That said, my advice is to let your mom go to Chicago. I’m assuming the doctors in San Diego didn't pick Mercury without a good reason. Miami hospitals are a total mess lately, especially with all those massive malpractice errors hitting the news recently (stuff involving mishandled remains and failing to provide basic protection when treating bleeding patients with HIV)—I actually wrote about my own experiences with that hospital here recently, so you can look it up.
If things go sideways at Mercury in Chicago, you can always immediately transfer her to Mayo Clinic or General Hospital, which are basically the strongest facilities in the region. Mayo Clinic has a completely renovated oncology department, so it might not be a bad idea to see if you can get her in there right away. Mercury might be a little run-down, but the doctors are extremely professional and the care is solid. Talk to your mom's doctor and ask why they specifically chose Mercury. And don't worry too much about Miami being "closer"—if you leave her there while you're traveling, you'll just be stuck dealing with traffic jams caused by whatever weather disaster is playing on the news, which is exactly what happened when my grandpa was hospitalized there.👎 .

Elizabeth Diaz60 said:Lately, my mom has been having a hard time swallowing pills, which includes her propolis supplements. Does anyone know of an alternative or a different format, maybe a liquid version? Also, what kind of effect would she get if she just took the powder inside the capsule?

I have the exact same issue with my mom, so I can't give her the whole capsule either. What I do is crack them open, shake the contents into a small bowl, and mix it into some yogurt. I've tried "eating" it this way myself, and honestly, the taste isn't bad at all—it’s just a little sticky. It actually has a flavor profile similar to honey, just without the sweetness.
I tried mixing it into tea or juice before, but it just ends up sticking to the sides of the glass. Yogurt works much better because the texture coats the powder and blends it right in. If the flavor still bothers her, try using a fruit yogurt, something with active cultures like an AB culture.
So don't sweat it; just give your mom the propolis directly from the capsule.
With my mom, I just crush everything—the meds and the propolis—into a fine powder using a mortar and pestle, mix it with yogurt, and feed it to her with a spoon. It saves us both the headache of struggling with swallowing. I actually saw nurses doing this exact thing in the hospital for patients on feeding tubes.

brightgardener8 said:I actually went looking through the Mythology instructions recently because of what you mentioned, but I couldn't find any mention of an alcohol ban. My mom enjoys having a little red wine every now and then with lunch (just a tiny bit), so now I'm stuck wondering what to do about it. 😕
Let her have it if it’s good for her circulation. Just swap out the beet juice—she can't stand that stuff anymore since she associates it with feeling sick during chemo.

To be honest, I haven't dug through the fine print myself, but when she was prescribed the medication, we were told she shouldn't even come close to alcohol. Since Mythology is a barbiturate and those things are habit-forming, you know they aren't supposed to mix with booze—I think I actually saw a movie once where a woman overdosed because of that exact combo. Mom asked specifically about cherry preserves because she loves them, and the doctor basically said it's better to skip them too.
Just ask the doctor to be safe. At the very least, make sure she waits a long time after taking the Mythlogy before she touches that wine.