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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 341 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 …
David Jackson22 David Jackson22 Active Member
51 messages
joined Aug 2010
#1821 ·
Robert Grant84 said:It’s been about a month and a half since my mom had surgery for colon cancer (with a few lymph nodes involved too)... physically she's bouncing back, slowly putting some weight back on (she dropped over 20 lbs during that whole ordeal), though her iron levels are still a bit low.
The thing is, she just doesn't have any faith that she'll actually get better, and she’s acting pretty depressed, which is honestly tough for us to watch. We took her to see a psychiatrist and she was prescribed two pills. Should she actually take them, or will things just eventually settle down mentally on their own? Next week she’s supposed to meet with the doctors to figure out the radiation or chemo plan, so she’ll be spending more time around people dealing with the exact same crap.

My mom went through colon cancer surgery about 12 and a half years ago—same deal, a few lymph nodes were involved, Duke Stage C.
And look at her now, sitting right here next to me, totally upbeat and happy; we're still enjoying life together, just feeling grateful that the worst is behind us. She went through the chemo back then too, and she crushed it!
My mom struggled hard mentally through all of it (I mean, who wouldn't?), but what really pulled her through was the fact that I was pregnant at the time, and then I had my baby... she lived for her granddaughter, and today she gets to enjoy two granddaughters!
Your mom has a massive chance of beating this, but she seriously needs some psychological support. If the doctors are suggesting meds right now, at the start, then yeah, let her take them. Eventually, she’ll be strong enough to handle things without them.
Just stay by her side, maybe read her this post of mine—it might give her a little hope for recovery.
Anyway, my experience with my mom was a total success! I truly, deeply hope the same happens for your mom.🙂
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1822 ·
Grace Flores14 said:All the talk and good times are gone. 😢 She’s mostly just sleeping lately, and during those brief moments when she is awake, she’s hallucinating—struggling to recognize faces, rambling incoherently, things like that. It feels like we’re reaching the end. 😢

It breaks my heart that it’s come to this. 😢
Stay by her side as much as humanly possible and keep talking to her. Even if it feels like she doesn't know who you are, I truly believe there is still a part of her that can sense the essence of what you're saying. Keep telling her how much you love her and how much she means to you. When life finally reaches its conclusion, you realize that love is the only thing that carries us through our entire existence; it's why we live. If we have loved deeply and shared that love fully, then our lives have been complete and meaningful, no matter how short they may have been.
I'm sending peace and strength to you and your family.
velvetmarlin17 velvetmarlin17 Member
18 messages
joined Jan 2011
#1823 ·
Angela Wright said:Nice.😍
Can you actually be specific about the diagnosis and what steps were taken? Honestly, I feel like we’re all just lacking some positive stories around here.
Honestly, I’m also a huge fan of d. S. Schreiber’s book. I’ve posted about it here before and gave it my seal of approval. It’s just a shame it wasn't around back when I actually needed it—it would've saved me so much wasted time and helped me stop spinning my wheels and focus on what actually matters.

There’s a ton of books out there about cancer and nutrition, but honestly, most of them are garbage. That’s why I rely on the Amazon.com rating system to gauge quality. If I stumble upon a book with reviews similar to the two I mentioned in my original post, that’s when I actually pick it up. In those reviews, you see countless people sharing how much these books actually helped them, while almost nobody complains that they didn't work. So why wouldn't you trust that? It's just twenty bucks. Most people have no clue about these resources or the fact that you can actually take matters into your own hands. They’re clueless. They just blindly trust whatever their doctor tells them, and that’s exactly how they end up becoming just another statistic. This is why forums like this are such a vital tool for staying educated. 🙂

My mom ended up in emergency surgery because of some abdominal pain. Not once did anyone even bring up the possibility of a tumor. They didn't even bother with a biopsy before cutting her open. Just went straight in. Total amateurs. The surgeon looked like he was barely thirty. They pulled out this massive tumor, but after running tests, it turns out it wasn't the primary one. The actual source? Never found. A few months after the surgery, her markers spiked like crazy. Right after everything went south, I started digging through medical texts and journals—my English is good enough to actually make sense of them. Mom eventually went over to Austria for a PET-CT scan, but they still couldn't locate the primary site. One oncologist actually told her she only had three months left to live. Honestly? I think that botched diagnosis cost her years of life right then and there.

Then she slowly started actually listening to me and watching what she eats. Because honestly, who knows better than a white-haired old lady? Nobody. I’m not going to sit here and lecture you on what’s good for you and what isn't. Go buy a book; there are plenty out there. Anything I say here would just be surface-level and useless anyway. On top of the diet, she’s taking a ton of supplements too. That part is huge. I usually grab everything through eBay. It’s easily the cheapest way to go—honestly, it's less than half the price of what you'll find in American grocery stores, especially for certain stuff. If you guys actually want the links, let me know.

Why aren't nutrition and supplements integrated into standard cancer protocols? It boils down to two things:
Proving a substance is actually a medicine costs a fortune—we're talking anywhere from $500 million to $1.2 billion. Big Pharma only bites if they're looking at a brand-new, patented invention. You can't patent something that just exists in nature. If anyone can manufacture a natural substance, why would a massive corporation sink billions into it just to have everyone else undercut them immediately? It’s financial suicide.
Look, there are tons of substances in food and supplements that actually help cancer patients. We aren't just talking about two or three things here—we’re talking hundreds. Each one plays a part, and some are massive contributors. Even better? A lot of them work synergistically. That means when you take them together, the effect is way stronger than if you just took them individually. It's basically 1+1 equals more than 2.

👋
Samuel Reed5 Samuel Reed5 Newcomer
7 messages
joined Aug 2010
#1824 ·
What can I do to make things easier for my elderly parent? It’s lung cancer—they're immobile now, but thankfully haven't had any pain for the last 10 days. This morning, though, they woke up barely able to speak—now they can't at all. The left side (arm and leg) has turned blue and feels cold to the touch. It’s almost like they’re in some kind of coma. I have no idea where the cancer has metastasized, but it’s just so strange how everything shifted in the span of five hours. Doctors came by for a home visit and checked their blood pressure... it was down to 80/40. Honestly, I don't even know if I need help right now, but it just feels better to tell someone 😢
Angela Kim3 Angela Kim3 Newcomer
2 messages
joined Jun 2011
#1825 ·
Donna Garcia52 said:My mom went through colon cancer surgery about twelve and a half years ago, involving several affected lymph nodes—Duke C stage...
She’s still here today, right by my side, looking bright and cheerful, just enjoying life together and feeling grateful for everything we've made it through. She did chemo back then too, and she beat it all!
My mom had a hell of a time mentally dealing with it (honestly, who wouldn't?), but what really pulled her through was that I was pregnant at the time; she gave birth soon after and lived for her granddaughter, and now she gets to enjoy two granddaughters!
Your mom has a massive chance of pulling through this, but she’s going to need serious psychological support. If she needs medication right now to get through the initial phase, let her have it... eventually, she'll be strong enough to handle things without them.
Just stay by her side, maybe read her my post... it might give her a little hope for recovery.
Anyway, my experience with my mom was positive, and I truly wish the same for yours.🙂

The MS CT showed some shadows on the adrenal glands and in the lungs, so now they want to run a PET CT (around 14 $0.00 ?) just to be sure. They're assuming it's nothing, but they want certainty before deciding on chemo or radiation. Is there any way to get this covered? As far as I know, there are only three private clinics out there that do this, none of the public hospitals...
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1826 ·
Robert Grant84 said:The MS CT showed some shadows on the adrenal glands and in the lungs, so now they want to run a PET CT (around 14 $0.00 ?). They’re assuming it’s nothing, but they want to be absolutely sure before they commit to chemo or radiation. Is there any way to get this covered? As far as I know, there are only three private clinics that do this, and none of the public hospitals

You can get a PET CT done using a referral at Medicol since they have a partnership with Medicare, so it won't cost you anything.
Angela Kim3 Angela Kim3 Newcomer
2 messages
joined Jun 2011
#1827 ·
I totally misread what my dad was saying 😕 ... we don't actually have to shell out for the PET CT (it’s $15,000 if you don't have a referral)
Samuel Reed5 Samuel Reed5 Newcomer
7 messages
joined Aug 2010
#1828 ·
My patient passed away today... 😢
Wishing you all the very best, everyone...
Arthur Moore8 Arthur Moore8 Newcomer
8 messages
joined Sep 2007
#1829 ·
I am so sorry for your loss.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1830 ·
Samuel Reed5 said:I lost my patient today... 😢
Wishing you all the best, everyone.

Please accept my deepest condolences.😢
Samuel Reed5 Samuel Reed5 Newcomer
7 messages
joined Aug 2010
#1831 ·
thanks everyone...
Nicole Sanchez43 Nicole Sanchez43 Newcomer
2 messages
joined Sep 2010
#1832 ·
Hey everyone

We just got back to Washington, D.C. yesterday—my 16-year-old daughter was diagnosed with cancer, and they can't even find the primary tumor.
It’s already metastasized to her lungs and spine.
The 3rd and 2nd spinal vertebrae and 5 lumbar ones are damaged, so she isn't allowed to get up at all.
The doctor was polite enough, I guess, but extremely clinical and cold.
Basically, he basically "dropped" the news that it's hardly worth doing much since there's no hope anyway.
Naturally, that absolutely crushed me.
I asked about getting psychological support for my child, which he flat-out refused because he "didn't see the need."
Everything went black for a second and I just bolted out of the hospital—I refuse to let my kid see me falling apart.
It's like I brought home a dog instead of a human being—a child who was just starting to live.
This is all so new to us; we found out about the illness just two weeks ago, and honestly, I have no idea what to do next.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1833 ·
Nicole Sanchez43 said:Hi everyone,

Yesterday, I arrived in Washington, D.C. with my 16-year-old daughter. She’s been diagnosed with cancer, but they can't pinpoint the primary tumor.
It has already spread to her spine and lungs.
With three cervical, two thoracic, and five lumbar vertebrae damaged, she isn't even allowed to get out of bed.
The doctor was polite enough, sure, but he was incredibly clinical—completely detached.
To put it bluntly, he basically threw it in my face that there’s no point in putting in much effort because there's practically no hope left.
Naturally, that absolutely crushed me.
I asked about getting psychological support for my girl, but he shot that down immediately, claiming he "didn't see a need for it."
My vision went dark, and I had to bolt out of that hospital; I refuse to let my child see me fall apart.
It feels like I brought a dog into this instead of a human being—a child who was just starting to actually live her life.
This is all completely new to us. We only found out about the illness two weeks ago, and honestly, I have no idea what the next step is.

Please reach out to the Red Cross. You will find all the support you need, including psychological help for both you and your daughter.
Once you click the link, look at the phone numbers on the left side of the page. Get in touch with Mr. Zoran Mitrović. He is an absolute saint and will help you. He walked his own heavy cross losing his son, but that experience only gave him more faith and strength to lift others up.
Hang in there—you can fight this!
Nicole Sanchez43 Nicole Sanchez43 Newcomer
2 messages
joined Sep 2010
#1834 ·
Angela Wright said:Get in touch with the Red Cross. They’ll give you all the support and counseling you need—for both you and your girlfriend.
Once you click the link, check the phone numbers on the left side of the page. Reach out to Mr. Zoran Mitrović. Honestly, the guy is a saint and he'll help you out. He went through his own hell losing his son, but if anything, that just gave him more drive and strength to help others.
Hang in there—you can fight this!

I already have. I called Mr. Mitrović and I'm meeting with him tomorrow.
Thanks
George Sullivan31 George Sullivan31 Newcomer
9 messages
joined Dec 2014
#1835 ·
My best friend’s situation has taken a massive turn for the worse. They’re currently draining fluid from his lungs—it’s brutal—and he’s just completely wiped out. I honestly can't wrap my head around how much weight he's lost; the guy has practically withered away in just a month. And as for starting chemo? Yeah, that's totally off the table for now.
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#1836 ·
Samuel Reed5 said:lost my patient today... 😢
stay strong out there, everyone.

I'm really sorry for your loss.
Samuel Reed5 Samuel Reed5 Newcomer
7 messages
joined Aug 2010
#1837 ·
George Sullivan31 said:My buddy's condition has taken a really bad turn. They're currently draining fluid from his lungs, and he’s just become so incredibly weak. I honestly can't believe how much weight he's lost—the man has just withered away in a single month. At this point, there's absolutely no talk of starting chemo...

Regarding my friend—may he rest in peace now—his father went through something very similar. He was in such a fragile state that they wouldn't even dare give him an IV because they were afraid the fluid would just flood his lungs, and it would have been instant death (at least, that's how I understood it at the time). He also dropped from about 180 pounds down to 95 pounds, and during those last ten days... right when I thought he couldn't possibly get any thinner, he lost another 22 pounds... 😢

Thanks, Lisa White54
David Bishop David Bishop Newcomer
1 message
joined Sep 2010
#1838 ·
I was wondering if anyone might be able to tell me... I mean, does anyone happen to know where one could find a more affordable way to get Glivec 400 mg (from Novartis) for a GIST diagnosis?
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1839 ·
David Bishop said:Can anyone point me toward a place where I can get Glivec 400 mg (from Novartis) at a decent price for a GIST diagnosis?

That medication is actually covered by Medicare for GIST indications.
According to Medicare:
For the treatment of adult patients with unresectable and/or metastatic malignant gastrointestinal stromal tumors (GIST). Treatment is approved by the Hospital Drug Committee upon the recommendation of an internist oncologist or a radiation oncology specialist at major medical centers, for a duration of up to 6 months.
Besides Glivec, Sutent is also registered for this specific indication, but it doesn't look like they've added it to the coverage list yet. At least, I couldn't find it when searching through the Medicare database.
http://www.medicare.gov
amberheron11 amberheron11 Newcomer
1 message
joined Sep 2010
#1840 ·
I didn't want to say anything until I'd read at least ten pages, and now I feel kind of silly even bothering to post this.

My grandpa has pancreatic cancer. It’s hit his liver and is spreading to his lungs. Chemo didn't touch it, and surgery did all they could, but the prognosis was supposed to be six months. Now? It's looking more like less than a month.

Part of me is almost relieved, you know? Just wanting it to be over so he doesn't have to suffer.
I haven't really processed it yet. I'm one of those people who hits the wall much later, once everyone else has already finished mourning.
And during this time, nobody gets why I'm not crying, why I seem so cold, or why I'm not grieving alongside the rest of the family.
Instead, I just bounce around the house. Busy with everyone, but really alone.

My grandma passed away two years ago from colon cancer. It had spread everywhere; she was gone only 17 days after the diagnosis.
She never wanted to burden us with her struggles, but we found out later she'd been dealing with symptoms for years.
She didn't even know what was happening until the very end. The doctors and our family all agreed there was no point in telling her—it would have just crushed her, not for herself, but for our sake.

My other grandpa died six months after she did. He'd been on dialysis for years, things got complicated, and then cancer moved in and ended it.

Back in 2004, my mom had surgery for breast cancer. One breast removed, plus chemo.
Then, two years later, they took out her uterus and both ovaries as a precaution. She was 44 and didn't want kids anymore anyway, and they suggested it since excess estrogen was the main culprit behind the breast cancer.
Everything has been clear since then, thank God.

My great-grandmother also lost her battle with cancer—uterine cancer.

Sometimes it feels like it's just a matter of time before it hits one of us.
As for preventative screenings... I don't know. Is it too early? I'm only 20. My parents are finally thinking about it now,
but trying to explain how it all works while I'm dealing with my grandpa being sick... I honestly don't even know where to start.
Now I'm sitting here feeling guilty because it feels like "I'm only thinking about myself."

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