Support resources for families dealing with cancer and other serious illnesses

neonhound32 said:🙂

I am aware... I haven't lost hope just yet...

Please, continue to be brave. Knowing you are there will only make a mother stronger and more determined to fight... kiss

Nancy Hernandez43 said:The body needs quite a bit of time to recover from the shock of major surgery. It’s not exactly comforting, but even a year later, my mother still deals with digestive issues—though apparently, that's just considered "normal" and nothing to worry about. Things should stabilize eventually; the main thing is that her bloodwork looks good, her markers are under control, and she's handling the chemo well!

Hang in there. Sending love.

Thanks. Today at the Mayo Clinic they confirmed her markers are fine, and radiation starts this Friday. We heard there's usually a long wait for radiation, so we were surprised since it hasn't even been a month since the surgery. Fingers crossed she handles this part okay too. Does anyone know what kind of side effects to expect from radiation?

I noticed someone mentioning Vitamin B17 earlier. I've actually done quite a bit of reading on it myself, and honestly, there’s a lot of really interesting stuff out there that makes sense if you look closely enough.

You can pick some up here:http://www.vitrend.com

Here is a little prayer/wish that I want all of us to say out loud together:

"To everyone in our community fighting cancer: I wish you love, healing, and true happiness. May you feel a deep sense of connection and a profound awareness of life and God in every single moment."

Love you guys!

Hey everyone.
It looks like my previous posts caused quite a stir, and I’m sorry if I was misunderstood. My only intention was to help those dealing with health struggles—whether it's cancer, autoimmune issues, or anything similar. To be clear, I haven't personally met Dr. Slavoj Žižek and know nothing about her, other than the fact that my cousin reached out to her (as I mentioned before). After seeing what my cousin went through, I started digging online, stumbled upon this forum, and spent a lot of time just reading others' experiences, hoping to find alternative solutions while trying to process someone else's pain. Then I came across IP6, and as a physician, it caught my attention. I've done the research I already shared—research I honestly wouldn't want to revisit. Anyone interested can find the specifics at www.inocell.com (you'll just need to read English). There are about 50 scientific papers authored by professors from the University of Maryland; any medical professional knows how much weight that carries. One team member is even Prof. Ivana Vučenik, which is part of why I looked into this so closely—she’s a senior professor at the University of Maryland and an associate professor at the university in the city. One more thing regarding the product and its ability to target tumor cells: the mechanism behind IP6 essentially triggers the body to defend itself using its own NK (natural killer) cells to destroy any kind of abnormal cells. It's all detailed on that site, provided you put in the effort to wade through the technical English.
Well, to my Doubting Thomases: *sapienti sat*.
To address the post questioning the product and Dr. Ž...: she suggested the treatment, and we sourced it from the USA through family connections.
I don't think her role in this is insignificant, especially since she is an immunologist—which is a crucial detail. It's hardly news that some nutritionist might be unfamiliar with a non-standard treatment; most people stick to what they learned in med school and rarely commit to lifelong learning.
I think I spent too much time trying to convince the skeptics, though my intentions were good.
Read the website if you want; if not, feel free to ignore this and everything else I've posted.
Wishing everyone facing these challenges a quick recovery, however you choose to pursue it.
Best regards,

darkmaker70 said:Thanks! They confirmed at the Mayo Clinic today that her markers look good, and radiation starts this Friday... I had heard the wait times for radiation could be quite extensive, so we were actually surprised since it hasn't even been a month since the surgery. We are just crossing our fingers that she handles this part well, too; does anyone know of any typical side effects from radiation?

My mother only underwent chemotherapy and was never exposed to radiation. As for the consequences? Throughout all six cycles—and she was receiving some of the strongest doses available—we struggled constantly with her neutrophil levels dropping... She chose to push through the chemo twice at her own risk. Beyond that, her hair fell out completely; at first, she couldn't even fathom it, constantly telling herself how beautiful she was. We had to shower her with compliments, and we even bought her a wig before the chemo started just so she could feel secure that no one would catch her without hair... Her hair eventually fell out almost entirely, though over time she began to accept it and would even go to the beach without the wig. Today she has short hair again, as it has grown back, but she still wears the wig regardless. I actually shaved my own head recently, just to show her it wasn't such a catastrophe...

It has been nearly eight months since her last round of chemo, and everything visible as a result of that "ordeal," as she calls it, is simply a sense of fatigue, frequent mental fog, and poorer concentration...

I am glad to hear the radiation is following so quickly... everything will turn out fine, believe that, hold onto hope, and just stay by her side. Hang in there!

Hi there,

I am just so happy.
Yesterday was my first round of chemo, and they gave me the strongest dose available. Honestly, though, I feel like I didn't even receive it. My body isn't reacting at all—not even a little bit. I know my hair will eventually fall out, but that’s the least of my worries right now...

Thank you all again for the support.

Best,

Rebecca Young63 said:Hi everyone,

I am so happy.
Yesterday was my first chemo session, and they gave me the heavy stuff. But honestly, I feel like I didn't even receive anything at all. Nothing weird is happening to my body—absolutely nothing. My hair will fall out, obviously, but that’s the least of my worries.

Thanks again for all the support.

Best,

God willing, it stays this way without any major side effects, but just keep in mind that some things tend to show up with a bit of a delay. Take slyseal28's partner, for example; he went through chemo and had zero reaction initially, but then a day or two later, he hit such a high fever they thought he'd picked up a bacterial infection. Anyway, he powered through it and he's fine now.😉
So, if you experience something similar, don't freak out or spiral into despair.

Rebecca Young63 said:Hello, hello,

I am just so happy.
Yesterday was my first round of chemo, and they gave me the heavy stuff. Yet, I feel as though I didn't even receive it. Nothing unusual is happening to my body—absolutely nothing at all. My hair will eventually fall out, which is a certainty, but that is truly the least of my concerns.

Thank you all once again for the support.

Best,

I am equally delighted to hear this news! 🙂 One might assume you’d feel as if someone had pumped fuel directly into your veins, given that absorbing such a massive dose of medication is no trivial matter... Just keep moving forward with steady determination in your desire to recover! As you so aptly noted, the hair is merely a minor detail... It will grow back... the essential thing is that you are doing well! kiss

shadowmason6 said:I can only build upon what Angela Wright experienced—every single doctor I’ve consulted has completely brushed off my questions regarding IP6 & inositol.
I've attempted to reach Dr. Žižek on her personal cell number a few times, but she hasn't returned my calls. I will try once more.
Martinko, could you clarify which specific types of illnesses Dr. Žižek has the most expertise in treating?

On another note, my mother is about to begin chemotherapy following the Mayo protocol. It involves 5-fluorouracil and leucovorin, administered five days a week (they mentioned half-hour sessions), followed by a three-week break, repeating this for six months. If anyone has navigated this treatment and can share how it was tolerated or what the outcomes were (the diagnosis is Dukes C, moderately differentiated), please let me know!

Damn, I know you went through this exact same protocol. How are things looking now? Hang in there!

My mother underwent that exact same protocol for stomach cancer. She endured the 1st cycle terribly—constant vomiting, weakness, and nausea; she didn't start feeling human again until the 12th day.
Her hair began falling out immediately after the 1st cycle, but she handled the 2nd and 3rd cycles remarkably well; the 2nd cycle, in fact, passed with absolutely no side effects at all.

darkmaker70 said:Thanks! They confirmed at the Mayo Clinic today that the markers look good, and radiation starts this Friday... I’d heard the wait times for radiation could be pretty brutal, so we were actually surprised since it hasn't even been a month since the surgery. We're just crossing our fingers that she handles it well—does anyone else experience many side effects from radiation?

There are reactions, sure, but they aren't even remotely comparable to what you go through with chemo. While the radiation is actually happening, you can't apply anything to the skin, but once it's over, you probably should. For my mom, the skin was basically her one and only "issue." She didn't end up getting any open sores—which I hear does happen sometimes—but she still has some discoloration, even though it's been several months since she finished radiation. Honestly, compared to chemo, it's negligible. Once the radiation treatment wraps up, you can use things like Bepanthen, calendula ointment, or aloe vera; there's actually a recipe on another thread involving a blend of essential oils that works great, so everything is fine.
And you just have to be careful when showering.

My throat tightens up every single time I see someone new joining the group. Hang in there, everyone; you all have more strength inside you than anyone could ever imagine. 🙂

Rebecca Young63 said:Hey there, hey there,

I am just so happy.
Yesterday was my very first chemo session, and they gave me the heavy-duty stuff right out of the gate. But honestly, I feel like I didn't even get anything at all. Nothing weird is happening to my body, absolutely nothing. My hair is going to fall out, obviously, but that’s really the least of my worries.

Thanks again for all the support.

Best,

So you lose some hair, fine—it’ll grow back thicker and better than before.
Just make sure you take care of yourself, because you might hit a wall of fatigue in a day or two. Not that it's anything you can't handle, though. If my mom could pull through it, I know you can too, God willing.👍

Hang in there, everyone, ladies and gents. 🙂

I honestly don't even know how to put the situation here into words. I’m at a point where I can't even tell if I'm seeing things clearly anymore. Everything should technically be fine, but it just doesn't feel that way. The doctors tell us it's all just fallout from the chemotherapy, and since my mom is already 71, her age obviously makes everything a much harder climb. She falls around the house—not every single day, but when she gets worked up over something, it can get pretty terrifying. There have been so many times where a sudden thud woke me right up; she’s such a tiny woman, but when she goes down, it sounds like someone tipped over an entire heavy wardrobe. Today alone, she took about five falls, most in the morning and one in the afternoon. She hit her head and ended up bleeding. Honestly, God has just been looking out for her so far, keeping her from killing herself or breaking something that would force a long hospital stay, which we all know wouldn't end well for her. It's physically draining, and mentally it's just as exhausting because you find yourself imagining the worst and you just can't break through to figure out what's actually bothering her. But then, the second she wants something, she becomes incredibly sharp and resourceful; she remembers exactly what she needs the moment she decides she wants it. 🙄

We’re essentially at a loss for what to do. She can't be left alone, but even when someone is with her, it doesn't solve the core issue—nobody is ever going to be by her side twenty-four hours a day, forever. There isn't a facility or a nursing home out there that provides this specific kind of intensive care. I mean, they exist, but not for people in our situation. When the bad days hit, I don't have any answers, other than maybe just having to restrain her. 😁
The reality is that you have to be constantly hovering—watching to make sure she doesn't fall, making sure she doesn't stand up too fast, watching her turn, changing her diapers, tracking when she's gone to the bathroom (because if she hasn't gone in three hours, she'll claim she hasn't gone all day), and trying to navigate her speech. You have to listen to what she says because sometimes it might be the truth, but you also have to largely ignore it because most of the time it isn't. You try to talk to her and engage, but you realize she's not really taking any of it in. As I’m sitting here typing this, she’s just flipping through channels, staying on any single program for no more than three minutes. She’s probably bored out of her mind, though I used to think she’d settle in for a football game; she used to love stuff like that until recently. Now, everything seems trivial and dull to her, aside from a few specific shows she sticks to.

And all of this is happening despite her test results being relatively decent. Her sodium levels actually went up slightly since the last check, which suggests the tumor hasn't flared back up, and as for the rest of the tests—well, we're just delaying them. She simply isn't up for it; the mere mention of a hospital sends a look of pure terror into her eyes, and we just don't want to put her through that. A more invasive exam would likely break her, or the doctors might just discharge her for being uncooperative. 😁

Regardless, we just keep moving forward. I ended up dyeing her hair, so she doesn't wear anything on her head anymore; she has short hair now, almost like a boy's cut. 😁 She actually forced my hand on that, and I'm actually thankful she did, because it helped me set my priorities straight. If this is what the fight for life looks like, then you only focus on what is absolutely vital to survival and what prevents the immediate crisis. Everything else is completely irrelevant. We'll just let things happen as God intends; our job is simply to do everything within our power. No one should have to endure this kind of suffering, though I suppose if I'm being honest, my mom and I are doing better than some others out there, whether they're sick or healthy.

Melissa Kim45 said:I honestly don't even know how to put what's happening here into words anymore. I'm not even sure if I can wrap my head around it...

I started typing this out, but I gave up pretty fast. I mean, you already know the deal. We went through the exact same thing with my mom, it's just that everything is moving way faster this time... It doesn't make it any easier or harder for us, though. Just this damn disease. I feel like we've all said that phrase a thousand times on this board by now. 😢

Hang in there! 🙂

Hey everyone
So, about a week ago, my dad got hit with a lung cancer diagnosis. Specifically...
DG: CA planocellular 1 dex eum cum infiltration mediastini KT 1 in tractu (GAP)
The doctors said he’s not a candidate for surgery because it’s spread to the center near the main vessels, plus there's this small spot on the ribs they aren't too worried about yet...
He had his first round of chemo (gemcitabine) yesterday and he seemed fine,
but today.....
To make a long story short, can anyone actually make sense of this pile of medical jargon and tell me what kind of cancer we're actually dealing with?

Thanks!

Melissa Kim45 said:Necessity has forced my hand—and I am actually grateful for it—to finally establish some priorities. If this truly is a struggle for survival, then one ought to focus exclusively on what is vital for life, or perhaps on those things that might jeopardize that very survival if left neglected. Everything else is utterly inconsequential. Whatever happens, let it be as God wills; our responsibility is simply to do everything within our power. No one should ever have to endure such suffering, and I am acutely aware that even for us and Mom, we are fortunate compared to the struggles others face, both the healthy and the sick alike...

You are fully aware of the reality of the situation, you are being realistic, and you are showing immense courage. Necessity has driven you to this point, and as you noted, there is reason to be thankful for that clarity. You are pouring so much strength into all of this, and I truly admire how you refuse to back down. Every single post you write pushes me further; you always write in a way that makes me reflect on my own circumstances, which aren't nearly as dire as yours, and then I find myself thinking about what you wrote at the end of your message: things are difficult, but we can only choose to be braver and happier because we are navigating this together, and for now, we are doing okay...

Hang in there! kisses

Thomas Alvarez19 said:Hi everyone,
A week ago, my dad was diagnosed with lung cancer—specifically
DG: CA planocellularis 1 dex eum cum infiltration mediastini KT 1 in tractu (GAP)
Surgery isn't an option because it's spread to the center near the main vessels, plus there's a small spot on the rebro that the doctors aren't too worried about right now.
He had his first round of chemo (gemcitabine) yesterday and he seemed fine,
but today...
To cut to the chase, can anyone look at this pile of Latin medical jargon and tell me what kind of cancer this actually is?

Thanks!

Squamous cell carcinoma (planocellular) falls under the broad category of non-small cell lung cancers. Squamous cell carcinoma accounts for about 30% of all lung cancer cases. It’s typically located centrally and usually measures over 4 cm in diameter. A cavity within the tumor is seen in 82% of cases, which can look like pneumonia, atelectasis (collapsed lung tissue), or a cavitary mass on an X-ray. Squamous carcinomas generally grow slowly, often taking a few years to progress from a localized area to an invasive tumor. It is less aggressive than adenocarcinoma, so the prognosis is generally better. There is also a very high correlation with smoking. www.mayoclinic.org

Look, as a layman reading through that Latin mess, it seems like your dad has a classic case of squamous cell carcinoma, specifically positioned centrally (infiltration mediastinum).
The silver lining here is that this type has a slightly better outlook compared to other types of lung cancer, so you really need to cling to that and stay optimistic. I'm obviously not a doctor and I don't know if that applies to his specific situation, but it's common for tumors that start out inoperable to shrink under chemotherapy, potentially reaching a point where surgery becomes an option.
Don't feel bad about being a nuisance and asking the doctors every single question you have. They tend to be pretty pragmatic; they usually assume that if you aren't asking questions, everything is perfectly clear and nothing needs explaining.
Pester them, nag them, and be relentless!

Hello everyone, and thank you for keeping this forum thread alive.
I’ll try to be as concise as possible here. A very close person to me—a young man, only 22 years old—has just been diagnosed with a malignant tumor in his abdominal area. Initially, a specialist at the Mayo Clinic performed what I suppose was a mere thirty-second physical exam and casually concluded it was a benign adenoma, subsequently scheduling him for a surgical procedure three months out. After some convincing, I suggested he get a second opinion regarding its composition; apparently, at a private clinic, they determined that this exact same adenoma (a small 2 cm mass) has actually transformed into something malignant and is growing rapidly. The capsule hasn't ruptured yet, so there is still time, and he has been scheduled for surgery. He even underwent a procedure to reinforce the capsule with silicone, which went fine. Next week, he undergoes the actual operation, which will be performed by a surgeon from Washington, D.C.—they managed to pull some strings to make it happen—though there is a persistent risk that the tumor might recur in the same spot. He spent hours talking with the doctor about the risks involved with both the surgery and the tumor itself. The surgeon explained that he must remove all the surrounding vessels and capillaries around the capsule—essentially cauterizing and cutting everything down to the smallest vessel, and there are an enormous amount of them. If even one tiny capillary is left behind, the tumor could return, and if it returns as a malignancy, we are in much deeper trouble—at least, that is how the doctor described it, given how aggressively it spreads and where it might travel next. They will be opening his chest cavity to monitor everything. Following the surgery, they plan to check for any recurrence every other day for the next 30 days. I don't even want to begin to describe how we have all been feeling during this time, let alone his family, though he is holding up remarkably well—for now. The doctor mentioned he is concerned about the sudden rate of growth and the fact that the pain is becoming quite intense multiple times a day. These are severe, debilitating pains that he can't even control, which then subside after about 20 minutes or so. My question for the group is this—if anyone happens to know: how is it possible for such a young person to have had a benign mass for a long time, only for it to suddenly transition into a malignancy (metastasizing within the capsule)? What is the technical term for this progression, and what is the clinical distinction between cancer and this specific situation? How could this happen to a 22-year-old body? Has anyone dealt with something similar? I just want to help him. Thank you all in advance.

Check out the latest updates here.

At this point, we aren't just fighting for those battling soft tissue sarcomas anymore. This has evolved into a fight for everyone suffering from rare and debilitating diseases. We need to pull together and support them—every bit of help counts.

A reporter from Fox News reached out to me earlier today. She’s putting together a segment on melanoma, and she’s looking for people who have personally dealt with the disease to share their stories on camera. Does anyone here want to provide a statement for the broadcast?

slyseal28 said:A reporter from Fox News reached out to me. They're putting together a segment on melanoma. Is there anyone here fighting melanoma who would be willing to give a statement for the broadcast?

Dandelion_seed reached out to me—thanks, dear! And please, tell them the honest truth about how things really are.