Resources and support for families dealing with cancer and serious illness

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.👎 .

Anonymous said:Does anyone actually know if people with Glioblastoma are supposed to avoid Vitamin C or stay away from citrus fruits like lemons and oranges? Is there any truth to that?

As far as I know, GBM is an incredibly vascularized tumor. If you look at how it develops and expands, that growth is directly tied to its blood supply. Because of that, shouldn't we be cautious about Vitamin C? It can directly influence increased vascularization. Why take that risk?
Based on that logic, certain food items should probably be avoided—at least if you ask me. It makes you wonder about things like lemons and oranges. We really ought to run a proper comparison to see exactly how much Vitamin C is actually in an orange versus a lemon. Is there even a meaningful difference? One has to check the data.
If anyone has a similar perspective or a different take on this, speak up. I’m listening.
Given the frequent link between diabetes and glioblastoma (GBM), we need to look at this more closely. Why is this connection being overlooked?
Who exactly understands the disrupted development of blood vessels? Tumor metabolism has its own very specific biology. Perhaps that’s the key to achieving a decent therapeutic effect from these drugs. My mother was diagnosed with Glioblastoma (GBM) back in mid-February—symptoms actually showed up even earlier. In just six months, we have endured enough chaos and madness to make it impossible to say with any certainty what actually helps.

Christian Wood63... my doctor showed me an imaging scan where you can see the bile ducts forming a 'Y' shape—he said the tumor is right at that junction. I honestly have no clue about the cancer stage, but everything I read online says this stuff usually gets caught way too late.

I'm just lost... I really don't know what to do next.

Best,

Anonymous said:Does anyone know if there's any truth to the claim that people dealing with Glioblastoma shouldn't take Vitamin C or eat fruit like lemons and oranges?

I haven't heard anything like that before. Our nutritionist actually recommended taking one capsule of Vitamin C twice a day. We also stick to natural juice blends—usually carrot, apple, and tangerine, or a mix of beet, apple, and carrot. When tangerines aren't in season, I just swap them out for oranges. If we’re ever too busy to squeeze everything fresh, we grab some 100% natural juices from Del Monte. My wife has been following this regimen for almost eight months now.
I’ve come across plenty of discussions suggesting that high doses of Vitamin C are worth considering. Of course, it’s likely a highly individual matter—just like pretty much everything else when you're dealing with glioblastoma. In our specific case, both the medical protocol and everything we've done outside of it have proven effective. We are approaching the one-year mark since the initial diagnosis, and honestly, I’d go as far as to say things have been about as good as they could possibly be since the surgery. We have an MRI scheduled for late September, which will give us the definitive word on whether we can stay on this positive track.
Best wishes to everyone. Hang in there.

Hey everyone,
I’m honestly at a loss for words... reading through your stories makes me tear up, but I can't help but smile seeing how incredibly brave you all are. 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... seven years ago, I lost my mom to cancer. We fought for over a year and a half... even now, I still look at her picture and see this lioness, this warrior, slowly fading away...
I miss her so much... some days it hits harder than others. It's especially tough because I don't have much family left—just my grandma...
But I just wanted to tell you: keep fighting. Stay strong. And please, every single day, tell the people close to you that you love them. Don't sweat the small stuff. Trust me, it’s just not worth it...
I'm sorry things feel so disconnected and that I can't offer any profound advice that would actually make a difference right now... I just wanted you to know that you aren't alone...
😘

Timothy Morgan38 said:That’s exactly what I’m thinking... while you don't want to hit someone over the head with a brutal truth, you shouldn't hide reality either... which is why today's conversation was so draining to talk about...

The part I can't wrap my head around is why the doctors won't tell her even a single straight thing...

All she got was the diagnosis and how many rounds of chemo are planned, and that was it. Nothing else...

They haven't told her how serious this actually is, how she should be managing herself, or even what's helpful versus what's harmful... nothing at all...

She knows the name of the diagnosis, but she doesn't grasp the gravity of it.

It’s like every doctor is acting like they have no clue. She asked point-blank about her prognosis—to the specialist at Jordan, her primary care doctor, and even a neighbor who happens to be a surgeon...

One looked at the chart and said: "Oh, it's nothing to worry about!"
The second one went with: "It really just depends on you and your internal chemistry."
The third gave the exact same answer as the second...

Helloooooooooooooooo! "Nothing to worry about"? Give me a break. This isn't a sore throat. You don't need to panic and crush her spirit, but you also shouldn't act like we're talking about a hangnail...

Not one of them mentioned anything practical that might help: like getting fresh mountain air, being near the ocean, walking, resting, blah blah blah... anything just so she knows what's best to focus on.

I was thinking about taking her and my dad down to Miami for a few days just to get away from this depressing daily grind... but I'm not sure if that's a smart move...

Does anyone know if sea air is actually good for her, or should she stay away?

Also, if anyone has any basic guidelines on what could help her feel better...

Even though she feels fine right now and claims she feels like she doesn't even have cancer, I just want to keep her in this state for as long as possible...

So, what would be good habits to maintain to keep things steady?

1. Quitting smoking (this will be tough, but I hope she pulls it off)
2. Resting (no issue there—she rests whenever she feels even a hint of fatigue)
3. Eating normally
4.........
5.....
6.....

What else?

Thanks

I don't have an answer. All I know is that if I face a relapse, I'm not giving up. If things go south, I don't want people pitying me or crying along with me while waiting for the end. I want to go out with a smile. Surrounded by love and good memories, without the tears. I want to be remembered for who I truly am...
I believe a person heals themselves through positive energy; it slows the disease down. There isn't just one path; we all choose our own.
Feed the body so it stays strong enough to fight the treatments and the illness; feed the soul with the love of those close to you...😘

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😘

Thanks for all the input, everyone. Quick question though: is it possible to stay on Temozolomide longer than the standard six-month stretch (assuming you're tapering the dose down gradually)? Since they actually make 5mg capsules—which is tiny compared to the 250mg she's currently on—wouldn't it make sense to keep her on a low maintenance dose just to help prevent those tumor cells from coming back?

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.

Since we’re paying out of pocket for the medication anyway, what’s the best way to get in touch with oncologists abroad to ask for their professional opinion?
Angela Wright, does the Temozolomide treatment continue indefinitely, or is it only administered if the cancer comes back?

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.😳

Angela Wright said:I can't say for sure, but there’s definitely some kind of protocol in place. Honestly, Temozolomide is a pretty heavy-duty drug—it's basically poison—so the real question is how long the body and organs can actually handle it. I really doubt someone could stay on it for their entire life.
My advice? Just do what she did: Google the top medical centers in the world and email them your test results along with an inquiry.
Another thing to keep in mind is that you can't just pick up Temozolomide over the counter; you're going to need a prescription and official documentation. This isn't like buying aspirin at a drugstore where they don't ask questions. It all comes down to whether her oncologist is willing to sign off on it. Be prepared for some hurdles.😳

I've already sent out emails to a few places, so fingers crossed I hear back soon. I'm hopeful the oncologist will agree to it. Let's just see if she can make it through these next five rounds of therapy first, then we'll know where we stand. 😳 Thanks, Angela! By the way, how is your mom doing? I haven't seen any posts from Amanda Williams64 in a while—do you have any updates on her mother?

Administering low doses, like 5 or 20 mg, daily is a mistake. It triggers tumor resistance far too quickly, which basically tanks the prognosis within a month or two.
According to certain studies, if you administer Temozolomide on a monthly basis—meaning a 28-day cycle—over the course of two years, there is a significant chance of extending survival rates.
The reality is blunt: as soon as you stop the Temozolomide, the recurrence sets in.

Christian Wood63 said:If you're just doing low doses like 5 or 20 mg daily, the tumor builds up resistance super fast, which makes the prognosis pretty grim over the next month or two.
According to some studies, if you administer Temozolomide once a month—basically on a 28-day cycle—for two years, there's a significant chance of extending survival rates.
The moment you stop the Temozolomide, that's when you risk a relapse.

Okay, monthly, fine... but what kind of dosage are we talking about? (She’s currently on 250 mg)
Are you seriously suggesting that after six months, God forbid, we should be expecting a relapse???

Anonymous said:... Thanks, Angela Wright. How’s your mom doing? I haven't seen any posts from Amanda Williams64 in a while—do you know how her mother is faring?

Hey, I'm back! I've checked in once or twice, but it's been pretty brief. My mom is doing okay. And by "okay," I mean she can still walk, eat, handle the bathroom, and bathe all on her own. But the independence ends there. She can't really cook anymore, her vision is fading, and using her phone has become such a struggle. Her speech is getting harder, too. Sometimes her sentences just don't make sense, so we have to play detective, asking follow-up questions to piece together what she’s actually trying to tell us. 🙂 There are moments when she loses track of time, too; if she takes an afternoon nap, she might wake up thinking it's already the next day. It's just one of those things. But she's hanging in there.
Hi everyone!

Anonymous said:Every month, sure, but at what dosage? (She’s currently on 250 mg)
Are you suggesting we should expect a relapse after six months, God forbid?

My mother is only taking 100 mg for five days per cycle, every 28 days.
How much longer can we push this?
With antiemetics, she handles it well enough. We also supplement with herbs, mushrooms from China, topical aloe, and all sorts of things.
Even though she nearly slipped into a coma, she hasn't said a word since May—but it's clear she understands everything and knows exactly what she wants. It has only been six months so far.
We will see what happens next, but we have no intention of stopping the Temozolomide after the six-month mark.
She only started Temozolomide at the end of May because our family decided to take matters into our own hands.
.

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.😢

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?

Ivanka Trump - how are you holding up? I notice you’ve been posting quite a bit of advice lately. Sending you plenty of strength during these times...