Resources and support for families dealing with cancer and serious illness

Grace Fowler said:Hey everyone!!
Just checking in before I head out—I actually have my surgical residency interview tomorrow....
I'll be back with updates soon..

Dina, good luck!!!!!

Blaise Pascal wrote:
This fight demands every ounce of strength we possess, including that deep reserve we didn't even realize was tucked away inside us.
When one of our own passes on, the rest of us just keep pushing forward, carrying their spirit through different means and in our own unique ways. Please, take care of yourselves out there. 🙂

Honestly, I don't talk about any of this with anyone else nearly as much as I do with all of you. Looking back, I’m actually so incredibly grateful for the people in my life who never call to check in or ask if I need anything—they’ve actually made me tougher. 👍
But, I just don't love them the way I love you guys. 🙂

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Hey, that was such a beautiful thing to write! You are seriously the sweetest! We love you too!!!!

mellowcanyon36 said:Hey everyone, hope you're all doing wonderful today!
Hi everyone, I’m the new girl on the block! I’ve spent the last two days just diving deep into every single post here, and honestly, I feel like I know all of you better than some people I actually hang out with in real life! It's been such an intense experience, though—every time I read a post about someone passing away, I get this heavy, sinking feeling right in my stomach. My heart truly goes out to all of you, and I am sending so much love and strength your way as you keep moving forward.

Well, I’ve got a story to share too! It all started just a few weeks ago with my Dad, right around the time we were getting ready for Christmas. 😢 So, he’s been diagnosed with throat cancer, specifically right at the base of the tongue. At first, everything seemed almost manageable—the doctors were actually telling us it was just the very beginning stages because he was having such a hard time nursing, you know, just struggling to swallow properly—but man, they were so wrong about that. It turns out it’s much more serious than they initially thought, especially since his neck on the right side is already full of metastases. It's just one of those things that hits you all at once. 😢 So, Monday, January 21st, is the big day—he’s heading into surgery over at the Cleveland medical center in Akron, but honestly, we’re all just sitting here feeling so uncertain about what to expect! It turns out he still has one of those old-school metal fillings in his mouth, and apparently, that metal causes such a massive glare on the CT scans that they can't get a clear enough look at the outlines to see if the cancer has already started spreading toward the throat. I can't even begin to tell you how much I'm shaking with fear right now, especially after seeing how many people pass away just a few short months after their diagnosis... it's just overwhelming. But even through the panic, I'm staying glued to my reading because I want to be as informed as possible; I am praying so hard that the surgery goes smoothly, and once Dad is finally back home in a month, I want us to be ready to go, fully geared up and prepared for whatever comes next!!!
He’s such a strong person, really, but honestly, he’s terrified of getting sick—like, scared out of his wits! He's got a major case of pathogenophobia, and I can't help but worry that all that anxiety might actually slow down his recovery process. He’ll be turning 54 in just a month, and physically, he’s in great shape right now; he’s been eating like there's no tomorrow because he knows there will be a period where he won't be able to eat much, so he's putting on some weight, which I actually take as a really positive sign!
I’m reaching out to anyone who has faced cancer in that specific area—if you have any advice or stories to share, I would be so incredibly grateful! I’m especially looking to connect with cosmicsailor91, because she mentioned earlier that her father was completely cured, and honestly, hearing something like that just fills me with so much hope!

Beatrice

Oh, honey, please just keep checking in with us! We’ve all been exactly where you are, feeling that same weight on our shoulders, but I promise you—you eventually get used to the rhythm of it all. Just try to embrace it and find a way to weave this whole situation into your life as smoothly as you can. There is absolutely no giving up!

crimsoncrane3 said:Forgive me for crashing this thread out of nowhere, but I’m hoping someone here might be able to shed some light on a situation.
I just started a separate thread titled ''Urgent, urgent!!! Treatment in China!!'' so please take a look at what I wrote there (to avoid repeating myself), and I’d be so grateful if you could tell me if you know of any specific cases actually cured over there.
The reason I'm asking is that a group of patients with multiple sclerosis is currently preparing to head to China, and my brother-in-law is planning to go with them (he doesn't have MS himself, but he's dealing with another serious illness).
Word on the street is that they've successfully treated quite a few people with sclerosis over there.

If anyone has any information at all, please help.

There was a report on a news program this week—something like a live national broadcast—discussing an association that raises funds to pay for medical treatments in China.
They were talking about cerebral palsy, and I think they mentioned multiple sclerosis as well.

The main takeaway was that this association is charging way too much for these treatments. There was a doctor on the program (I can't recall her name) who pointed out that the actual treatments and accommodations in China are significantly cheaper and more affordable than what this association claims.

Furthermore, she emphasized that diseases like these aren't "curable." You can use therapies and medications to manage symptoms and control the progression of the disease, sure, but you can't achieve a permanent cure.

The real danger with these "Chinese-style" methods is making sure you don't end up with someone who tells you to abandon your medication and conventional medicine entirely.

There was even a Chinese physician practicing here in the States who weighed in on the matter. They even brought up that whole scam involving that woman, Shen Chi (I'm not sure of the exact spelling), who charged exorbitant fees for seminars and CDs while telling people to stop taking their prescriptions. And those who followed her advice? They died. Apparently, authorities in Canada are looking for her, and maybe even investigators here because of suspicious patient deaths. That's the reality of these alternative methods...

crimsoncrane3 said:Forgive me for crashing this thread out of nowhere—I feel like I’m just dropping in from a parachute here—but I think you all might be able to help me out.
I just started a new thread titled "Urgent, Urgent!!! Treatment in China!" so please take a look at what I wrote there (to avoid repeating myself), and please let me know if you know of any specific cases that were actually cured over there.
The reason I'm asking is that a group of MS patients is currently preparing to head to China, and my brother-in-law is supposed to go with them—he doesn't have MS himself, but he's dealing with another serious illness.
Word is, they’ve supposedly cured quite a few people suffering from sclerosis.

If anyone has any info at all, please, I need the help.

Everything slyseal28 wrote is spot on, though I'd just add one thing: that doctor on the show mentioned that you can verify all those claims and that specific association leading people to China by checking with the American Academy of Acupuncture or the American Medical Association. Watch out for charlatans like that—when I heard those treatments, including travel costs, run upwards of 90 Dan $0.00, I was honestly speechless.

Amanda Brown3 said:First off, sorry for just dropping in like this—I see a lot of people here fighting serious battles, and I truly hope everyone pulls through.
I’ve also noticed some people share really helpful advice, which is exactly what I need right now...
So, here's the situation...

I have a little relative—just two months old—who was born with a lump on his neck about the size of a sake bottle. At first, the doctors told us it was just fatty tissue or fluid and suggested surgery, but after specialists took a closer look at the scans, they claimed it's actually part of the baby's brain, fused with a tumor that's been growing since conception. They told us he might only have two months left. We're all living in this state of suspended animation—trying to stay optimistic because the baby is so strong and fighting hard—but that lump on his neck has actually gotten a bit larger. Some days, the doctors tell us it’s possible they were originally twins and one passed away early on, essentially fusing with the other, so even the medical pros aren't entirely sure what they're looking at anymore. I'm asking if anyone here has dealt with a similar situation in their family—if you could share your experience, I’d appreciate it.
Thanks in advance, and again, sorry for crashing the party—I'm not even sure if this is the right thread for this.

Have you tried sending the test results to specialists overseas?

Grace Fowler said:Hey everyone!! Just checking in before I head out. I actually have an interview for a surgery residency tomorrow... I'll be sure to check back in soon with updates..

Good luck, Dina!!! 😘

Hang in there, Dina, and good luck! You're such a fighter, and I just know you're going to make it through...👍

Hello everyone... I want to wish you all—along with your families, friends, and loved ones—strength and success in fighting off every kind of illness and setback that comes your way...

Everyone has their own journey, and I suppose I’m starting mine now. I’m hoping you might be able to offer some guidance or advice, no matter how small...
My father’s situation changed abruptly three weeks ago when he suddenly lost the ability to move his legs. He’s been paralyzed from the waist down. Leading up to this, he was dealing with intense pain around his shoulders and back—it seemed like a pinched nerve at first. He ended up in the hospital, where they diagnosed him with skin cancer, likely melanoma. It appears the metastases have spread to the bone, which is probably why he’s immobile now, given how much pressure it's putting on his nerves. He’s undergone radiation and potentially some chemotherapy... and yet, after just three weeks, they are already discharging him!😠 How does that even make sense? What have they actually accomplished?
I’ve been reading through your posts, and I see names like Taxotere, Xelod, and Biobran popping up constantly... but none of those have been mentioned in his treatment plan. I was looking things up online and saw a single vial of Taxotere (1x80mg/2ml) listed for over $5,000. I honestly don't know how anyone manages these costs. Is chemotherapy with Taxotere typically an out-of-pocket expense? Based on what Martine 973 mentioned about her mother being treated for a year, it feels like you'd need to be a millionaire just to afford Taxotere treatments...😕 Why aren't they administering this to him? You all probably know the answer, and you might think I'm completely clueless, but I'm truly out of my depth here... 😢

wiredranger21 said:Greetings... I wish everyone—their families, friends, relatives, and all those close to them—a successful fight against all manner of pests and other illnesses...

Everyone has their own story, and I suppose I have mine to tell. I am hoping you might be able to offer some guidance through your advice...
My old man suddenly found himself unable to move his legs just three weeks ago. Everything from the waist down simply stopped working. Before that, he was dealing with constant pain around his shoulders and back (he’s a big guy, and a nerve likely got pinched). It landed him in the hospital. They discovered skin cancer—melanoma, it seems. The metastases have spread to the bone, which presumably is why the nerve is being compressed and he’s immobile... He went through radiation, and likely chemotherapy as well... and now, after only three weeks, they are discharging him!😠 How is that even possible? Why? They haven't actually done anything...
I read through your posts and everyone keeps mentioning Taxotere, Xelod, Biobran... none of those were prescribed or administered to him... I was looking online and saw one vial of Taxotere 1x80mg/2ml costs about 5,275 dollars, maybe? I honestly don't know... I'm lost here. Is Taxotere-based chemotherapy something you have to pay out of pocket? Based on what Martine 973 wrote, her mother has been undergoing treatment for a year... at those prices, only a millionaire could afford Taxotere chemo...😕 Why aren't they giving it to him? You all probably know the answer, and you'll likely think I'm quite ignorant for asking, but I truly have no clue... 😢

Welcome to this forum; I am certain you will find the answers you need here.

I don't know much about my mother's specific treatment, nor the exact medications or the specific drugs used during her chemotherapy. What I do know best is how much it costs, because I see the financial strain firsthand... though we haven't complained about a single cent, because at the end of the day, she is our mother, and we can say we would do absolutely anything for her.

We haven't been exactly sitting on a pile of cash; we've taken out loans, we're selling everything we own, and we're trying to forget the shock of what we call the "staggering price tag" for this "tragic struggle" the moment we see she is doing well and the cancer cells are gone. Right now, we are waiting for her next check-up in about a month, and we are terrified. If they find cancer cells again, unfortunately, we will be forced to continue her treatment in America (she is being treated at Avian in the US) because we will have completely exhausted our resources.

As for that inexplicable discharge—you should seek advice from a specialist, because there is no harm in seeking a second opinion.

Stay strong, fight with everything you have, and do not regret a single thing—together, I am sure you will find a way to cherish every shared moment and pour strength into one another... kisses

wiredranger21 said:They found skin cancer, which looks like melanoma. It’s already spread to his bones—I assume it’s pressing on a nerve because he can't move right now. He’s gone through radiation and probably chemo too, and yet, after just three weeks, they’re sending him home!😠 How is that even possible? Why would they do that? It feels like they haven't actually done anything at all.
😢

If we are talking about melanoma, unfortunately, it is one of those cancers that is really only treatable while it is still operable. Once it starts metastasizing, things get incredibly difficult because it tends to be quite resistant to both chemotherapy and radiation. While doctors do administer both, it is usually just palliative care intended to manage pain and temporarily slow things down rather than provide a cure.
In America right now, there isn't any other standard treatment available that could make a difference.
Over in the US, doctors typically prescribe interferon and Proleukin; this is a type of biochemical therapy believed to show some results in roughly 10% of cases, though you might eventually have to request it at a major hospital like Mayo Clinic at your own expense.

When melanoma reaches advanced stages, patients generally look toward clinical trials, such as the DC vaccine trials I mentioned before, or various experimental chemotherapies like MDX-010, Elesclomol, and so on.

My future husband is in a very similar situation to your father, and I can tell you from experience that I am never going to stop hoping as long as we both are breathing, regardless of what the doctors say—and they haven't had anything positive to tell us in a very long time. He decided he didn't want to undergo any kind of traditional chemotherapy or radiation, so he chose to try non-aggressive immunotherapy in Germany instead. He underwent an extremely intense surgery to address the metastases, completely overhauled his diet, and is taking a whole regimen of supplements for detoxification and immune support. Dr. Soltisyk was a huge help to us through all of this, so he is definitely someone I can recommend as being truly competent when fighting melanoma. If there is any way I can be of help to you down the road, please feel free to reach out via private message.

Oh, and there is one more thing that is absolutely, incredibly important:

I have spent countless hours reading through dozens of different life stories and scouring every corner of the internet, and what I’ve learned is that there really are no set rules. There are so many people whom conventional medicine essentially gave up on, yet they managed to fight back and secure years upon years of a wonderful quality of life despite their melanoma diagnosis. Because of that, please, arm yourselves with optimism and positive energy and just keep pushing forward bravely—with plenty of faith and inner strength. I am rooting for you, just as I am rooting for everyone else out there facing similar struggles in their own lives!

wiredranger21 said:...

Like Elizabeth Gonzalez55 suggested, give DCVax another shot. Just stay strong and push through!

Beatrice, check your PMs when you can.

Just wanted to drop in and say hello to everyone, both the regulars and the newcomers.
I’m still here, keeping up with all of you and reading everything. I also want to say thanks for all the private messages and the support you've been sending my way.🙂
As for things on my end, nothing has changed—it’s still the same old story over here...

Amanda Brown3 said:First off, sorry for just barging in like this. I see so many people here fighting through all kinds of illnesses, and I truly want everyone to win their battles..
I’ve also noticed some people sharing really helpful advice, which is something I could definitely use right now...
So, basically..

I have a little relative, just 2 months old, who was born with a lump about the size of a sake bottle on his neck. At first, the doctors told us it was just fatty tissue or fluid and suggested surgery, but after specialists analyzed the results, they claimed it's actually part of the baby's brain along with a tumor that's been growing since conception. They told us the baby might only live for two months at most... We're all just living in this state of suspense, trying to stay optimistic because the baby is so strong and fighting hard... but that lump on his neck has actually gotten a bit bigger. Some days they tell us it's possible they were twins at the start and one passed away early and fused with the other, so even the doctors aren't quite sure what to tell us anymore... So, I wanted to ask if anyone has dealt with a similar situation in their family—if you could please share your experience here...
Thanks in advance, and again, sorry for jumping into a thread that might not even be the right place for this..

Hey Amanda Brown3!
The best thing I can suggest is to try reaching out to St. Jude Children's Research Hospital in the US. Here is the email:🙏andra.villarreal@stjude.org.
http://www.stjude.org , and their number is ++(901) 495-4055.
Since they are a research hospital, the tougher the case, the more interested they are, plus they provide free housing and treatment. You'll just need to convince your doctor to talk to them and prove that the baby is a candidate for their programs.
There's also Cincinnati Children's Hospital, which is widely considered one of the top pediatric hospitals in the world—you can find all their info online.
At least if you get a solid diagnosis from them, you'll have taken a huge step forward. Good luck!🙂

Hi everyone,
I just wanted to reach out to anyone dealing with edema—that swelling that just won't quit—and let you know that Arnica drops might be the best natural remedy out there. I actually heard about this from a woman who was staying at the oncology ward alongside her mother. She has a relative who works as a neurosurgeon over in Germany, so whenever she shares something helpful that they suggest, we jump on it immediately to get it for my mom. For this woman, the swelling literally vanished in just seven days—her doctor couldn't even believe it during the follow-up appointment! My mom has only been taking them for two days so far, but I’m really hoping to see some improvement in her leg function soon; she can move it, but walking is such a struggle right now. As for how to use it: you dissolve 20 drops of Arnica in about 3/4 of a cup of water and take one tablespoon every two hours. I picked up the drops at a local herbal apothecary. If you're looking for something plant-based, please give it a try—I truly can't recommend it enough.🙂

Watch out when using Arnica—some folks around here call it Brđanka!
It actually works wonders for swelling caused by an injury. Just make sure you stick to 2-3 drops in a glass of water; otherwise, it can mess with your heart, especially if you're already dealing with the effects of chemo.

Hang in there, Dina!!🙂

Are you okay?? Get in touch as soon as you can!!

First off, a huge hello to everyone here. I honestly don't even know where to start—so much has been happening lately that I feel completely overwhelmed and lost. About three years ago, I went through a divorce after twelve years of marriage. There were good times and bad, of course, but that’s really the least of my concerns right now.
I eventually processed that and started moving forward, though being unemployed and relying on my mom for support made things pretty tough for a while. Thankfully, that phase passed. I met someone wonderful who actually gave me my faith in love back, and just when life finally seemed to be looking up last year, my dad suffered a stroke. He's still in the recovery process. I kept telling myself that after all the hardships I faced back in 2007, the storm was finally passing and better days were ahead. I found a job, and I'm even thinking about getting married again. But then... there's that dreaded "but." At the end of December, my mom was diagnosed with breast cancer. She had her surgery on Tuesday, and the doctor isn't offering much optimism; he mentioned things look grim and she'll likely need radiation and chemotherapy. We're currently waiting on more test results. It's all so foreign and heavy, and I feel incredibly scared and adrift.😕
There are moments where I find myself crying all day long, and then suddenly, I'll hit a point where I just refuse to accept the reality of it all. I try to pretend none of this is happening to me, acting as if everything is fine, until my mom calls me and pulls me right back into the reality I'm trying so hard to escape—longing for those times when everything felt okay again.