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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 5 views · 3.9K replies

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Participants James Cox6Lisa White54shadowmason6Angela Wrightbrightgardener8Melissa Moore39James Martinez3Grace Stewart6Megan Fowler78Zachary Howard2Ashley Rodriguez41Douglas Lee13rowdyheron17placidheron24slyseal28jadesailor14Michael Newman3jadetinker42Benjamin Grant6wanderingharbor61cosmicviper76Dana Baker37Jason Torres5Peter Chavez6 …
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#41 ·
Look, don't give me that face. Your mom is going to get through her treatments. There are going to be good days and bad ones, obviously, but that’s just how this disease works—you just learn to live with it. It's part of the deal now. She’s going to be there when your baby is born, she’s going to see you become a mother, and she’ll be over the moon. Just trust her doctor. If the doc said there aren't any metastases in the other lung, then there aren't. They handled the pleural effusion, right? Now she’s moving onto chemo and radiation, and that should knock it back. These non-small cell things move slow. Once you take them right in the gut, they need time to recover, and once they try to crawl back up, you gotta hit 'em hard again! My husband had Stage IV! And honestly? You wouldn't even know. Anyone looking at him would think he’s perfectly healthy. He stays active, just within his limits, you know? He goes fishing, drives the car, rides his motorcycle, does the gardening... keeps up with the cats. That's plenty. He just won't cook! Man, he could if he wanted to!
So, seriously, stop spiraling. If my husband can pull through this, your mom can too. She has every reason to keep fighting—she's got you and those future grandbabies waiting. She’s going to make it, I'm certain of it.
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#42 ·
placidheron24 said:Look, whether people are experts or just regular folks, we all deserve to know what's going on, which is exactly why I dropped those news links and that study in my last post.
Don't you dare come at me with that "you have no clue" crap.
The reason this whole thing will probably get nuked by mods is because of those forum rules you keep throwing in my face—plus, I get the feeling most people here just can't handle info that doesn't fit their narrative, even if it's right there in front of them.
Fine then, since you're so pressed, I'll go ahead and link another article for you. If anyone thinks reading this stuff is gonna blow their mind or cause a meltdown, just don't click it.

Just gotta ask: has anyone here actually dealt with a brutal cancer diagnosis? If you have, then I guess I shouldn't be surprised by how you're acting. If not, God forbid you ever have to deal with it. We're all just regular Americans on this board, desperately trying to find some way to win a fight that feels totally rigged against us. At the end of the day, everyone gets to make their own calls, so why is everyone suddenly sprinting to the doctor the second they feel a tiny hiccup?
I've already done the deep dive into all that info you're peddling. I've been fighting alongside my husband through his illness for four years now. And honestly? That stuff didn't give me any peace of mind; it just left me spinning in circles and feeling more lost than before.
placidheron24 placidheron24 Member
12 messages
joined Apr 2009
#43 ·
Lisa White54 said:Just wondering—has anyone actually lived through a serious battle with cancer before?...

YES! More than one person.

I’ve already done my homework on all that info you're throwing out there. Honestly, I’ve been dealing with my husband's illness for four years now. And let me tell you, none of that stuff gave me any peace of mind—it just left me feeling totally shaken and confused.

If you or anyone else feels like my posts are too much for you, honestly, just hit that "IGNORE" button. In my opinion, it's probably the best move if you find what I have to say unhelpful or frustrating.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#44 ·
placidheron24 said:I believe both believers and non-believers deserve access to the facts, which is exactly why I shared those news reports and the study.
Don't you dare come at me with that "you have no clue" attitude.
The reason my post will likely stay buried is because of those forum rules you keep throwing in my face, and honestly, I get the feeling most people here would rather ignore information that’s sitting right in front of them in plain sight.
Fine then, if you're so sensitive, I'll drop another article right here—and if anyone thinks reading this might cause a mental breakdown or some massive confusion, feel free to just keep scrolling.

It's pretty obvious you're peddling something here, indirectly spreading misinformation designed to lead people down the wrong path. My takeaway? You didn't come here with good intentions. In fact, there's a perfect term for your behavior on this board: troll.

I'll say it again: you don't have a clue! And I'm saying that with the same level of sheer audacity you use when you post stuff like this.☕
slyseal28 slyseal28 Member
11 messages
joined Mar 2007
#45 ·
placidheron24 said:It’s a grim thought, isn't it? The idea that chemotherapy might actually claim the lives of twenty-five percent of those it's supposed to be saving. It really makes you stop and wonder about the fine line we walk between life-saving intervention and systemic toxicity. We talk about "fighting" cancer like it's a battlefield, but sometimes it feels more like a scorched-earth policy where the collateral damage is the patient themselves. You have to ask if our current medical standards are truly optimized, or if we're just throwing everything at the wall to see what sticks, even if the cost is far too high.
A recent study involving 600 cancer patients—all of whom passed away within thirty days following their chemotherapy sessions—has yielded some rather grim data. It turns out that in over a quarter of those cases, the chemotherapy itself actually accelerated the patient's death or was the direct cause of it. Now that this has come to light, medical professionals have been called upon to take a long, hard look at their current approaches to chemo treatments. One has to wonder how many more "breakthroughs" we'll have to endure before the industry admits when a standard protocol is failing.
The Special Counsel’s report regarding the patient's outcome and subsequent death states that they would... It’s a heavy subject, but one that warrants some serious contemplation: perhaps it's time for doctors to reconsider the standard approach to chemotherapy—specifically whether we should be looking at reducing dosages or, in certain cases, opting out of the treatment altogether..
The patient group involved in this specific study represents a mere two percent of the 80,000 individuals undergoing chemotherapy annually across the country. It’s important to note that we aren't talking about early-stage cases here; these are all critically ill patients where chemo is largely used as a palliative measure to manage symptoms rather than as a definitive cure. After reviewing the data, the findings are sobering. While 35 percent of these patients received what could be considered adequate care, the study also revealed that in 27 percent of cases, the chemotherapy actually accelerated death or was a contributing factor to it. The sheer toxicity of these treatments can trigger a cascade of complications, the most devastating being a severe infection known as neutropenic sepsis. It makes you wonder how much more transparency we need regarding these outcomes.

I just want to clarify one thing here—most of our doctors aren't exactly handing out prescriptions like candy without a reason or some form of oversight. Every physician we’ve encountered, including those mentioned by our own members, makes it a point to warn about the potential risks involved with any treatment plan. In all my time engaging with this community, I haven't met a single doctor who would dare suggest that chemotherapy or targeted therapies are somehow "risk-free." They know better.
jadesailor14 jadesailor14 Regular
314 messages
joined May 2006
#46 ·
placidheron24,
Why don't you just stick to alternative cancer treatments instead?
I honestly don't get what you get out of constantly bothering everyone in this group
by acting like you're "opening their eyes." People aren't stupid, for God's sake!
placidheron24 placidheron24 Member
12 messages
joined Apr 2009
#47 ·
Angela Wright, jadesailor14:
I honestly think we’re fighting the same fight—we just have different ways of going about it.
Look, maybe my posts get a little intense for some people (feel free to just ignore me, seriously)—but I’m really just passing along info that's out there. I didn't make any of this up; it's all relevant to what we're talking about.
From here on out, I'll probably toss in a little disclaimer whenever I'm sharing news or opinions like this.

Warning: If you find the info or opinions I share here to be a bit much, please feel free to skip them or just hit the "ignore" button.

Article.
That’s all I've got.

EDIT: slyseal28, I'm totally with you on everything you said in your last post.
Michael Newman3 Michael Newman3 Newcomer
1 message
joined Nov 2022
#48 ·
I would like to donate a box of "unknown" tablets, which are used to treat nausea caused by chemotherapy. The expiration date is April 2009.
jadetinker42 jadetinker42 Member
22 messages
joined Oct 2007
#49 ·
Just wanted to drop a quick note because another "match" wrapped up today...😢😢😢

Osteosarcoma vs. Youth: 1-0😢

She was only 26 years old, too...😢
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#50 ·
jadetinker42 said:Just wanted to let everyone know that another "game" ended today...😢😢😢

Osteosarcoma vs. Youth: 1-0😢

She was only 26 years old....😢


My heart goes out to her family and friends.😢
Ashley Rodriguez41 Ashley Rodriguez41 Member
46 messages
joined Nov 2006
#51 ·
Quite an interesting read on this topic:

http://books.google.com/books?id=hrn...result#PPR5,M1
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#52 ·
jadetinker42 said:Just wanted to let you know that another "game" wrapped up today...😢😢😢

Osteosarcoma vs. Youth: 1-0.😢

She was only twenty-six...😢

Robert, please accept my deepest condolences.😢
Hang in there—we've all got your back.
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#53 ·
jadetinker42 said:Just thought I’d mention that another "match" concluded today...😢😢😢

Osteosarcoma vs. Youth: 1-0😢

And she was only twenty-six years old....😢

"Life existed before we were born and will continue to exist after we leave this world" (Coelho)

Her youth withered under the weight of pain; my sincere condolences on the loss of such a budding soul, whom you shall surely encounter again in the next life...
Grace Stewart6 Grace Stewart6 Member
37 messages
joined Mar 2009
#54 ·
jadetinker42 said:Just letting everyone know that another "game" ended today...😢😢 😢

Osteosarcoma vs. Youth: 1-0😢

And she was only 26...😢

It’s truly devastating.
Every story like this hits hard, but twenty-six? It makes you wonder why life works this way...
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#55 ·
jadetinker42 said:Just dropping in to say another "match" ended today...😢😢😢

Osteosarcoma vs. Youth: 1-0😢

She was only 26 years old, man....😢

Life is just plain unfair. Sending my deepest condolences.
wanderingharbor61 wanderingharbor61 Member
20 messages
joined Aug 2011
#56 ·
God,
I want to thank everyone who reached out with condolences... it’s been 13 days since my mom passed, and life just keeps moving forward, I guess...

I see there's a whole debate going on regarding chemo... honestly, I think it's pointless—at least in this forum... no medication is completely harmless, but if it buys even one more day of life, then you take it...

My mom would have gone through with chemo if she could, but in her specific case, it wouldn't have made a difference... that's why we leaned into alternative options... and maybe it gave her a little more time here on Earth...

I'm grateful to everyone here who shared information and helped us fight for her life...

We're mostly here to support our loved ones... and occasionally share stories of healing—or what Dr. Vrdoljak calls "recovering"—my aunt had breast cancer 19 years ago, went through three surgeries, chemo, and radiation, and she's still with us today, full of life at 82...😍

I also know someone who dealt with malignant melanoma... four years ago, doctors gave her only four months to live, yet here she is, still kicking...

In any fight, faith and the support of your family are everything...

Robert Downey Jr. I am so deeply sorry for your loss.

Lisa White54 I've been reading your posts and I really admire your grit and how hard you're fighting... I truly believe your wife will pull through...

Dandelion seed Everything is going to be fine with the PET/CT scan, I truly believe that... once I've gathered myself a bit, I'll reach out, but until then, hang in there and stay strong...

Best to everyone...
cosmicviper76 cosmicviper76 Newcomer
7 messages
joined Jul 2008
#57 ·
jadetinker42 said:Just dropping in to let everyone know that another "match" ended today...😢😢😢

Osteosarcoma vs. Youth: 1-0😢

And she was only 26 years old....😢

My heart truly goes out to her family.
James Cox6 James Cox6 Active MemberOP
150 messages
joined Mar 2009
#58 ·
jadetinker42 said:Just letting you all know that another "match" ended today...😢😢😢

Osteosarcoma—youth 1-0😢

She was only 26...😢

Ugh 🙂🙂🙂

My sincere condolences... I'm speechless. Life really is unfair. 😢
James Cox6 James Cox6 Active MemberOP
150 messages
joined Mar 2009
#59 ·

I’m looking for some insight from anyone here who actually knows what’s going on:

1. Is it true that you can wait months just for an initial screening and processing at an oncology ward?? Ever since this new centralized scheduling system rolled out, I was told everything slowed down... apparently, this has been the case since January 2009.

2. Is it true that there are waiting lists for chemo—specifically priority lists where younger patients get precedence? (If that’s how it works, what’s a realistic timeframe for my 71-year-old mother to actually get her turn?)

3. Is it true that Terceva will only be handed out to "selected" patients? Meaning, it won't be prescribed to everyone who needs it because Medicare just allocates a set amount of doses to specific hospitals and that's it... leaving those who can't access it—for whatever reason—without the medication, regardless of their legal rights.

4. Is Terceva on the drug list as of March 1st?
(Because if it isn't, I have no idea how we're supposed to get it)

THANKS FOR THE ANSWERS
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#60 ·
larazg;19219463 said:

So, Terceva is officially on the approved drug list as of March 1st, I think... or whatever. My husband actually asked his doctor if he’d be eligible for it, but the doc basically brushed him off and said it wasn't necessary for his case. Honestly, I have no clue which hospital you're talking about—like, whose oncology department specifically? At the Mayo Clinic, they didn't play those games; they just treated people based on what was actually happening, and I never saw any weird priority lists favoring younger patients over older ones. As far as I can tell, everyone gets the same shot. My dad is 80, and after being admitted to our local community hospital, he got transferred over to the Mayo Clinic. They ran every test under the sun, including a CT, found out it wasn't even cancer but just pneumonia, cleared him up, and sent him home. What I'm trying to say is, they don't just look at your age and write you off; they put in the work for everyone. Even during my husband's treatment, I saw folks in their 70s and up going through chemo and radiation without anyone blinking an eye.
As for other hospitals... who knows.

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