Support resources for families dealing with cancer and other serious illnesses

steelfalcon15 said:Basically, this movie exposes the absolute bottom-feeders running insurance companies. I’m convinced the exact same type of scum is pulling the strings at big pharma, too. I still can't wrap my head around how a single medication can cost HALF A MILLION DOLLARS!!! Are you seriously expected to sell your house just to stay alive?!?! 😲 😲 😲 It's sickening.

Anyway, arguing about this is a waste of breath. Let's focus on what actually matters: how to recover quickly or how to support those close to us. I have an idea for helping people that's a bit complicated to explain here. I'm not going to spell it out on a public forum, Angela Wright, slyseal28—if you two are interested, send me a DM...

Sutent doesn't cost half a million dollars, it costs $16 (including tax and pharmacy markup)—but even so, it's outrageously expensive considering there's zero benefit from a single box.

Who missed last week's broadcast of America Live? It featured an incredible lineup of journalists (Zuber, Nađvinski, Sever, and Mikleušević) sitting down with some truly courageous patients to discuss the reality of Sutent. you can catch the replay right here.

The program is broken up into five segments, but trust me, it’s well worth your time. Even Professor Ivan Đikić stepped up during the show to offer his support to those fighting these illnesses.

We have to keep pushing forward—not just for Sutent, but to ensure future life-saving medications actually make it to the people who need them.

I was watching the live broadcast. Honestly, hats off to those journalists (shout out to Maji, Zuber, and Nađvinski). It’s the first time I’ve actually seen reporters speak with such raw honesty about private matters, really pinning down the people who just spout nonsense—treating lives like they're nothing more than statistics rather than actual human beings.

It made me feel so proud of them, and honestly, proud of everyone fighting the good fight every single day. They showed they aren't going to back down or cave in to those arrogant materialists who think money is everything.

My aunt came over to visit today. We still haven't told her about her thyroid cancer diagnosis. Right now, she isn't in pain and she's still mobile, but she's declining so fast... 😢

We have an appointment with the oncologist in early February to decide if she'll start chemo, though I have my doubts. It's just heavy, you know? We all know the ugly stuff is coming, and the most heartbreaking part is feeling this total, crushing helplessness because there's absolutely nothing we can do to stop it. 😢

Rachel Chase80 said:Sadly, we all know there are ugly things coming our way, and the most heartbreaking part is feeling completely powerless to stop them 😢

The best thing you can do is provide top-tier palliative care... show her love, stay by her side, make sure she’s clean, fed, and comfortable. We’re all just passing through this life, and there isn't a damn thing we can do to change the inevitable, but we can at least ensure the final chapter is peaceful and dignified.

Angela Wright said:You can give her the best palliative care possible... just by loving her, staying by her side, making sure she’s clean, fed, and comfortable. We’re all mortal, there’s no escaping that part of life, but at the very end, we can at least make sure things pass peacefully and with dignity.

Thanks, Angela. That’s exactly what we’re doing. We’re right there with her every single day—laughing together, helping out around the house, just showing her love. Look, we can't just wish this damn disease away, but we can face it head-on and refuse to let it ruin our days, no matter how incredibly heavy things get.

Rachel Chase80 said:I just finished watching Life Live. Seriously, hats off to those journalists (shout out to Maji, Zuber, and Nađvinski). It was the first time I’ve actually seen reporters get brutally honest about private matters and absolutely tear into people spouting nonsense—treating them like they're talking about inanimate objects instead of actual human beings.

👍👍👍
I'm with you! And massive props to Nađvinski for totally shredding that lady from Medicare!

It seems to me that even the lady at Medicare isn't to blame here. She looked like someone caught in a tight spot, forced to ask uncomfortable questions while simply following the protocols she was given. One would assume she actually takes some pride in doing her job correctly.
I suspect these decisions are being made at a much higher level.

Hey everyone... I just registered on the forum, so I was scrolling through a bit to figure out which group this belongs in. I did some digging to see if anyone else deals with similar stuff, and it turns out there are way more people facing this than I ever realized. So, please don't take it personally if I end up repeating something that's already been said. I'm not trying to be selfish by just venting about my own situation; I'm hoping that sharing this might help someone else going through the exact same thing. It’s a psychological matter... I didn't post in the psychology section because I view this particular struggle as one of those incurable, malignant conditions. I'm talking about my parents. My father suffers from depressive disorder, and my mother deals with a severe mental health condition—a form of schizophrenia. It's actually my mother's situation that's driving this post. Being an only child, my earliest memories are essentially a constant battle against this illness. I have to say, though, my mother is a massive fighter; she handles her struggle incredibly well. My question for anyone who has walked a similar path is: how do you handle being an only child in this position? How do you isolate yourself from the chaos without turning your back on your sick parents? I recently got married and moved 37 miles away for work. Honestly, living two separate lives—one as a husband and the other as a child—is anything but easy. And to add to the weight of it all, my wife's mother might be diagnosed with multiple sclerosis soon. All of this is taking a massive toll on us. We're young, and the weight of our parents' illnesses is absolutely crushing us. I really hope you guys understand the core of what I'm dealing with here.

Grace Stewart6 said:I honestly don't think even the lady at Medicare is to blame here. She looked like some poor soul forced to answer uncomfortable questions while just following the script she was handed. It’s like she actually cares about doing her job right.
I have a feeling these decisions are being made at a much higher level.

Oh, she's definitely to blame...
Nađvinski asked for her actual human opinion, but she just kept spitting out rehearsed lines without showing an ounce of empathy.

But then again, there's that other sad, harsh reality: she definitely wouldn't be going through this nightmare of drugs and treatments if she were just an ordinary, "little" person...😠

Btw, Angela Wright, killer segment!

Hey everyone, I just finished watching a show on PBS and honestly, I’m feeling kind of inspired. Those people are absolute heroes, truly. They gave me a glimmer of hope that things might actually turn around. My mother is currently on Sutent and the medication is working wonders for her.
But then reality sets in, and I’m left wondering how we’re supposed to move forward. We’ve already started liquidating assets just to stay afloat, and at this rate, we’ll run out of things to sell soon enough. And even if we had something left, who would buy it? Nobody has any money left. The sheer cost of getting a doctor to prescribe a specific drug, or dealing with commissions, or hospital fees... it’s enough to make you physically sick. It’s painfully obvious to anyone paying attention that the whole system is just a giant money grab. The idea that Medicare will suddenly decide to approve coverage for everyone—it’s hard to swallow. It feels impossible to believe they’ll actually spend $16667 on every single patient, and who knows how long that would even last? I’d love to be optimistic, I really would, but I can't shake the fear that even if things improve, they'll just start implementing "patient selection" protocols. It’s nauseating...

Hey everyone!
Someone really close to me is dealing with a grade 3 anaplastic ganglioneuroblastoma, so I’m reaching out to see if anyone here has any info or knows anything about it... please let me know... thanks...
Good luck to everybody!

analogdrifter73 said:Hey everyone, hope you're all doing okay!
A dear person in my life has been diagnosed with a grade three anaplastic ganglioneuroblastoma. I’m reaching out to see if anyone here has any actual information or insights regarding this specific diagnosis... please let me know. Thanks...
Wishing everyone the best!

https://www.medlink.com/medlinkcontent.asp
http://www.hkcr.org/publ/Journal/vol...oexistence.pdf

Hey everyone on this forum,

Our dear Dina9 passed away today 😢...I know it because she truly was an angel🙂. She finally closed those tired eyes of hers—those eyes that looked so sad lately—and went to be with her dad (that’s how she used to put it, saying he was waiting for her, even though she still had enough fight left in her to live... until today).

I just have to get this out... 😢
My dear D... I'm going to miss you so much. All your kind words, all your big dreams, that incredible optimism you held onto despite the sea of bad things surrounding you... It’s hard, and my heart is heavy... I love you, truly and deeply.

rapidfalcon13 said:Dear friends of this forum,

Today our Dina has gone to the angels 😢...I know this because she truly was one🙂. She closed her tired eyes (in recent times) and went to join her father (that’s how she used to put it—that he was waiting for her, but that she still had enough strength left to live... until today).

I just have to get this out.. 😢
My dear D... I am going to miss you so much. I'll miss all your kind words, all your dreams, and that unwavering optimism you maintained despite the sea of misfortune surrounding you. It’s hard, and my heart is heavy... I love you deeply and sincerely...

I am infinitely sorry. She was there for me during my darkest moments, even while fighting her own grueling illness; this news has shaken me to my core.😢
Dina, dear, you are an angel now.🙂

Dina9, you're with the angels now....

rapidfalcon13 said:dear friends of this forum

today our Dina has gone to the angels 😢...I know it because she truly was an angel🙂. She closed her weary eyes—those sad eyes from lately—and went to be with her dad (that’s how she used to say it, that her daddy was waiting for her, but that she still had enough strength to keep going... until today)
.
I just have to write this down.. 😢
my dear D... I am going to miss you so much—all your beautiful words, all your dreams, all that optimism you held onto despite the sea of bad things surrounding you... it's hard, and my heart just aches... I love you so much, truly...

😢
I think she'll leave an inspiration for many people because of the sheer courage she showed in her fight
my heart goes out to everyone who knew her and loved her

rapidfalcon13 said:Dear friends of this forum,

Today, our dear Dina9 has gone to the angels 😢... and I know that, because she truly was one🙂. She closed those sad eyes of hers (in recent times) and went to be with her father—that’s how she used to say it, that her dad was waiting for her, even though she still found the strength to keep fighting... until today.

I just have to get this out there... 😢
My dearest D... I am going to miss you so much. I'll miss all your beautiful words, all your dreams, and that incredible optimism you held onto despite the sea of bad things surrounding you... It’s hard, and my heart truly aches... I love you so much, and I mean it sincerely...

Our dear Dina... damn this disease... I love you so much. Thank you for the beautiful words of support and love you gave me every single time I felt like I was sinking... PDT_Love_06

I believe you’re in a more beautiful place now, waiting for us... and when we meet again, we’ll grab a coffee together and enjoy a really strong one.

Dink, everything just moved so fast... we didn't even get a chance to finish eating those bars of Goran's, given how much you talked about them... there’s still so much left unsaid, untold, and undefined...🙂🙂🙂 My dear, you’ll stay in my heart forever. Exceptional people like you, Dink, are few and far between... just know that I’m going to stay positive and keep doing everything in my power to help people like you, and to do it all for you... you remain my inspiration until the next time we meet where you'll be waiting for us all with that infectious smile... kisses

Dear Dina,

Your optimism and sheer strength have left quite an impression.

I find myself thinking that there is now one more advocate up there, someone who will continue to encourage us and stand by our patients.

THANK YOU.

My dearest Dina

People as special as you were are truly rare, and you touched so many lives with your spirit... and now, 🙂with your passing, you leave such a void. You were our guardian angel then, and you always will be.

Sending my deepest condolences to her family and loved ones, because if it feels this heavy for us...🙂