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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 22 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 …
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3761 ·
Jamie Howard3 said:It’s basically a glorified placeholder—it doesn't do any harm, but don't expect it to actually move the needle.

☕

Maybe we should just stick to what the actual studies say. If you’re looking for some actual science on this, check out the research on beta-glucan over at PubMed. It’s all there if you want to dig into the data yourself.

I don't have any personal experience with this myself, but from what I’ve heard from people I know who have used it, they say it really helps bolster their immune systems and provides that much-needed boost between chemo cycles.

I think it all boils down to what we actually expect from it. If you’re looking for some kind of miracle cure that’s going to wipe out cancer overnight, you’re probably going to end up deeply disappointed. Look at it this way: it’s an excellent immune booster. It's designed to help bridge the gap during oncology treatments, keeping your immune system strong enough to handle the heavy lifting while shielding you from those nasty infections that become such a massive risk during this stage of treatment.
Amy Torres4 Amy Torres4 Newcomer
5 messages
joined Feb 2007
#3762 ·
Please, I’m begging you all to keep my mom in your prayers... please, just for her...😢
ruggedpuma47 ruggedpuma47 Member
28 messages
joined Jan 2013
#3763 ·
Amy Torres4 said:please pray for my mom... please...😢

Our thoughts are with you, Amy.🙂
Andrew Cruz3 Andrew Cruz3 Member
16 messages
joined Feb 2013
#3764 ·
My mom has liver metastases, but they still haven't located the primary tumor.
We just picked up her latest results today after she finished two rounds of chemo and took a three-month break. Her bloodwork looks fantastic, but the CT scan shows the lesions have grown—or rather, there are more of them now.
On the previous scan, the lesions in the right lobe had vanished, and the ones in the left were smaller.
Now, they've come back.😢

What am I looking at here?
Does this mean everything is just getting worse and resurfacing?
Last time, the doctor was actually quite pleased with the results, even though, from our perspective as a family, things didn't feel all that great. I’m trying to hold onto that same hope for now.🙂
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3765 ·
Andrew Cruz3 said:My mom has liver metastases, but they haven't been able to locate the primary tumor yet.
We just got her latest results back after two rounds of chemo and a three-month break. Her bloodwork looks incredible, but the CT scan shows the lesions have actually increased in number.
On the last scan, the lesions in the right lobe had vanished, and the ones in the left were smaller.
Now, they're back. 😢

What does this mean?
Is everything just getting worse and coming back?
Last time, the doctor was happy with the progress, even though we felt uneasy about the numbers, so I’m still trying to hold onto some hope. 🙂

It means things are stalling out. Unfortunately, without identifying where that primary tumor started, you're fighting a ghost, and successful treatment becomes an uphill battle. My honest advice? Go get a second opinion. Not every oncologist or radiologist at a major hospital has the same level of expertise.
Andrew Cruz3 Andrew Cruz3 Member
16 messages
joined Feb 2013
#3766 ·
Angela Wright said:Essentially, things are just staying the same. Unfortunately, without identifying the primary tumor, there isn't a clear path for successful treatment. My honest advice? Get a second opinion. Not every oncologist, radiologist, or pathologist brings the same level of experience to the table.

Could you please clarify two things for me:

What does "staying the same" actually mean in this context?
Is it a plateau—neither better nor worse? Or does it mean the disease is progressing at a steady rate, which wouldn't be good news?

Our doctor told us they wouldn't be able to find a specific site and that it was perfectly normal.
Plus, if I heard him correctly, he implied that finding it wasn't even that critical, but now
you're telling me something else entirely?
wiredcanyon39 wiredcanyon39 Active Member
74 messages
joined Jul 2020
#3767 ·
So, the PET/CT results finally landed on my desk, and honestly? No signs of metabolic disease whatsoever 😁
ruggedpuma47 ruggedpuma47 Member
28 messages
joined Jan 2013
#3768 ·
wiredcanyon39 said:The PET scan results just came back, and there are no signs of metabolic disease.😁

Absolutely wonderful news.🙂 🙂
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3769 ·
Andrew Cruz3 said:Look, I need you to clear two things up for me:

What exactly keeps this status quo from shifting?
If I’m reading this right, "neither better nor worse" isn't exactly a victory lap, is it? Does that mean the disease is just steadily progressing at its own pace? Because if things aren't improving, that doesn't exactly sound like good news to me.

Our doctor told us they wouldn't be able to find the lesion at all, and that this is actually completely normal.
Also, if I've got this right, he didn't think finding it was actually that big of a deal, and now...
Do you think I’m going to start talking like someone else? No. My style isn't something you can just flip a switch on.

Look, let’s get one thing straight: not all cancer diagnoses are created equal, and you certainly don't treat them all with the same cocktail of drugs. If we're talking about potential colon cancer that has spread to the liver, you aren't going to approach that treatment plan the same way you would for breast cancer with liver metastasis. It’s a completely different beast.
Since they haven't pinpointed exactly where the primary tumor is located, they’re basically just treating based on some professional hunch that might not even be right. To actually pull off a successful treatment, you need a specific set of established parameters—data points they clearly lack—which means they're essentially just fumbling around in the dark. Otherwise, the medical term for a malignant metastatic disease without a known primary site is "occult carcinoma."
The reality is that dealing with metastatic disease is a massive uphill battle from day one. It complicates every single aspect of treatment when you're already fighting a moving target, but it’s an absolute nightmare when you don't even know where the primary tumor is hiding. 😢 So, they’re pumping them full of certain cytostatics designed to slow down the disease's momentum, but let’s be real—with that kind of therapy, you're usually just waiting for the inevitable relapse.
When a doctor claims that the primary tumor will never be found, I think it’s an outright absurd statement. It’s one of those reckless assertions our doctors love to throw around—especially the ones over at MD Anderson Cancer Center. 🙄...refusing to admit what is clearly a massive embarrassment. 🙄It’s pretty obvious they don't have the experience or the right gear to handle a situation like this. There are clinics around the world—places like MD Anderson Cancer Center—that deal with this kind of thing constantly, meaning they have way more hands-on expertise and much better technical setups. Since they didn't provide the kind of answers you actually need to get top-tier treatment, I think it is absolutely vital to go out and get at least two more opinions from people who actually know what they're doing. Sure, there's a chance you might get bad news, because sometimes it really is impossible to find the primary site—you know, when those tiny malignant micro-formations release metastases that end up being larger than the original tumor itself. But there is also a huge chance that specialists who have seen it all and actually know where to look will be able to track it down. Honestly, it would be a massive mistake and a total injustice to the patient to just sit there and treat one person's opinion like it's some kind of holy scripture. You can't just blindly trust one doctor's professional abilities and call it a day.

I remember a case involving an occult carcinoma that doctors in Washington, D.C. just couldn't pin down. It wasn't until the patient saw specialists over in Philadelphia that they finally caught it—it was a deeply hidden colon cancer. Because they actually found it, the patient was able to get the right targeted therapy specifically designed for colon cancer, which significantly boosted their chances of maintaining a decent quality of life. My point is this: you don't always need to fly halfway across the globe to find answers. Sometimes, you just need to head to the next town over and find someone willing to actually do the legwork and look a little closer.

Look, I’m no doctor, but I’ve spent years working alongside oncology patients, and I’m speaking strictly from that frontline experience. I’m sorry if my bluntness hits a nerve, but this is just how things work based on everything I’ve seen and learned. If this were someone close to me—my own flesh and blood—I wouldn't hesitate for a second; I would pull every possible lever to pinpoint that primary site as fast as humanly possible.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3770 ·
wiredcanyon39 said:The PET scan results are in, and there are no signs of metabolic disease.😁

😍😍😍
Absolutely incredible news—huge congrats to a true fighter! Keep doing exactly what you're doing.🙂
Andrew Cruz3 Andrew Cruz3 Member
16 messages
joined Feb 2013
#3771 ·
@Angela Wright/">@@Angela Wright

Thanks so much for taking the time to explain all that.
We’re going to go out and get some more second opinions.
The hardest part is knowing my mom can't handle heavy-duty chemo, and this approach—even at its best—is definitely going to mean a lot of it.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3772 ·
Andrew Cruz3 said:@Angela Wright/">@@Angela Wright

Thanks a ton for putting in the effort and getting back to me.
We're going to go out and hunt for some more opinions.
What really stings is knowing my mother can't stomach even the best chemotherapy, and this situation—at its absolute best—definitely means facing piles of it.

When you've got the right therapy, you at least know what you're signing up for.

Honestly, I think it’s entirely possible we're looking at cancer somewhere in the large intestine. Because of how twisted things get during a colonoscopy, doctors often miss it or just can't reach it, and sometimes it even manages to hide from a PET scan. Plus, that type usually hits the liver first.

What specific treatment protocol is being used right now, or which drugs is she on? Do you have any official findings from an MD Anderson Cancer Center specialist that you could share? Maybe I or one of the doctors in this group could give you some better direction or point you toward the next steps.
Kimberly Cox58 Kimberly Cox58 Newcomer
7 messages
joined Feb 2013
#3773 ·
People, please help. I am in complete shock. We found out yesterday that my husband has colon cancer. He’s only 43. His surgery is already scheduled for this coming Monday. I have no idea what comes next. Do they know the results immediately after the operation, or is there a long wait? I feel like I'm losing my mind, yet I'm trying so hard to stay strong for him—though, honestly, I'm struggling. Is it enough that he hasn't lost hope?
ruggedpuma47 ruggedpuma47 Member
28 messages
joined Jan 2013
#3774 ·
Kimberly Cox58 said:Everyone, please help, I am in total shock. We found out yesterday that my husband has colon cancer. He’s only 43. His surgery is already scheduled for Monday. I have no idea what comes next. Do they know the results immediately after the operation, or is there a long wait? I feel like I'm losing my mind, though I'm trying to stay strong for him (but honestly, I'm failing at it). The most important thing, I think, is that he hasn't lost his spirit.

Hey, Kimberly Cox58...
It’s a heavy way to start the morning, logging onto this forum for the first time over your very first cup of coffee. 😢
But... that's just how life goes, honey. We don't get a vote in these things.
It wasn't long ago that I did the exact same thing you did—signed up here—and then everything just started unfolding...
Your husband is sick, the diagnosis is what it is, and the surgery is Monday. Everything that follows will come to light in due time, whether the doctors tell you or if our friend
Angela Wright🙂 weighs in with her experience.
Don't lose your mind. You can't, and frankly, you aren't allowed to let yourself break right now. You know, "in sickness and in health" and all that.

Let's just wait for the pathology reports after the surgery; once those are in, much more will be clear. 🙂 Sometimes—and I'm almost certain it's always true, even if I shouldn't say it out loud
—things aren't quite as catastrophic as they seem in the moment. All these "Terrible-But-Not-So-Terrible-Things" somehow end up refining the soul, forcing us to see ourselves in a completely different light. 🙂 I know these kinds of thoughts aren't what you need to read right now, but... maybe they'll stick with you and help when you eventually need them.
ruggedpuma47 ruggedpuma47 Member
28 messages
joined Jan 2013
#3775 ·
Eh... my fifties. I completely forgot to mention the most important part.
Now, look, I don’t want to hurt anyone’s feelings here, and God forbid I offend someone who has a sick loved one in their family—so I’m apologizing in advance if any of this comes off as insensitive.

When I found out, totally out of the blue, that I had lung cancer... that my left lung had to go... well, I won't drag the story out.
But there was this moment where my biggest struggle wasn't even the illness itself; it was worrying about my family.
I could handle the sickness, sure, but dealing with their grief, those looks they gave me, the tears, that sudden sense of defeat and surrender... it was destroying me. And I knew instinctively that if I stayed that miserable, I wouldn't stand a chance.
One morning, I signed up for this forum, sent a private message to Angela Wright to tell her honestly how things were going, and after she replied, I did the very first thing I thought would "kill" me.
The very first thing I did? I used my loudest, most serious voice to tell everyone in my family that they were officially BANNED from buying me pajamas ever again!! After that, I dealt with everything else that was "killing" me... and now, regardless of how sick I am, we are happy.

I just wanted to tell you all: be there for your loved ones, but trust me, no matter how sick someone is, they still crave happiness and smiles. 🙂
Hannah Williams51 Hannah Williams51 Newcomer
7 messages
joined Jan 2013
#3776 ·
Kudos to you, ruggedpuma47! I was actually sitting in an oncology ward myself back when I was 36—thankfully, I managed to pull through relatively quickly. But fast forward 15 years, and I found myself playing the role of the family member standing on the sidelines, biting my nails in anxiety. My mother didn't get as lucky. From those two wildly different perspectives life handed me, I can tell you that being the family member was, at least for me, much harder. You want to do so much, but you just can't. It’s incredibly frustrating. I completely empathize with the family members out there—they’re supposed to be the rock and the support system, but instead, they’re terrified and drowning in this overwhelming sense of helplessness. Honestly, more often than not, the patients end up being the mentally tough ones, turning around to comfort their own caregivers. But hey, maybe that's just because we're all built differently.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3777 ·
Kimberly Cox58 said:Guys, please help, I am in complete shock. We found out yesterday that my husband has colon cancer. He’s only 43. His surgery is already scheduled for Monday. I have no idea what comes next. Do they know the results immediately after surgery, or is there a long wait? I feel like I'm losing it, though I'm trying to stay strong for him (but honestly, I'm struggling). Most importantly, he hasn't lost his spirit yet.

After the surgery, you have to wait for the pathology report on the removed tissue samples. That’s what will pinpoint exactly how malignant the tumor is and determine the stage of the disease. It usually takes about 7 to 10 days to get those results, and everything regarding the subsequent oncological treatment plan depends on that report. The surgeon might be able to give you a rough idea right after the procedure, but take everything they say with a grain of salt until the lab confirms it.
Look, it is what it is. This shock you're feeling right now is actually the worst part; once the actual treatment begins, you'll likely find a better mental footing. You have to accept the reality and just take it one day at a time, dealing with things as they hit you. Right now, the surgery is the priority—focus entirely on that and then on the recovery process. Any more spiraling beyond that is useless and actively works against you. There are also a few critical rules both of you need to live by:
0. A man with a diagnosis doesn't suddenly become an alien or a different person. He is still the same guy; he just happens to have a diagnosis. As terrifying as that sounds, it’s just one medical condition among many people face every single day.
1. This diagnosis is primarily happening to your husband, and he's the one bearing the brunt of it. You are caught in the crossfire, but don't ever let yourself crumble in front of him or turn your emotions into a bigger drama than the situation warrants. It’s a very slippery slope, and it happens all the time—it ends up feeling like an unjustified psychological burden to the patient.
2. Let him make his own decisions, even when you disagree with them. This is vital because it gives him back a sense of agency over his own life, which is often the first thing stripped away during illness. Feel free to offer suggestions and voice your opinion, but never pressure or force him. Use this experience as a way to deepen your bond and strengthen your relationship. Be his rock; he needs someone steady and focused.
3. Don't let the illness run your lives. You are the ones in control, not the disease. Keep your daily routines, social life, hobbies, and work as normal as possible—assuming, of course, that treatment obligations and his physical condition allow for it.

Everything I've said here is, quite frankly, the best and most essential advice I can give anyone looking to navigate successful treatment.
Kimberly Cox58 Kimberly Cox58 Newcomer
7 messages
joined Feb 2013
#3778 ·
Angela Wright said:After surgery, we wait for the pathology report on the removed tissue. This will confirm if it is an occult carcinoma and determine the exact stage. That report usually takes about 7 to 10 days, and it dictates the entire course of oncology treatment. While the surgeon might have a preliminary idea immediately after the procedure, one should always take those initial thoughts with a grain of salt.
What is done is done. This shock is arguably the hardest part; once treatment begins, you will likely feel more mentally prepared. One must accept the reality and move forward day by day, tackling things as they arrive. Right now, the surgery is the priority—focus entirely on that and the subsequent recovery. Any excessive worrying beyond that point is futile and counterproductive. There are also several vital principles both of you must follow:
0. A husband with a diagnosis does not become an alien or a stranger. He is the same man, just with a diagnosis—which, regardless of how terrifying it sounds, is just one among many conditions people face daily.
1. The diagnosis primarily affects your husband; he is the one suffering most. You are impacted as well, but never let your emotions overshadow his experience. Avoid making your reaction larger than the situation itself. It is a slippery slope, and doing so often places an unfair psychological burden on the patient.
2. Let him make his own decisions, even when you disagree. This is crucial. It preserves his sense of agency and control over his life, which is often stripped away. Feel free to offer suggestions and express your views, but never pressure or force him. Use this trial as an opportunity to deepen your bond. Be his pillar of strength; he needs someone steady and focused.
3. Never allow the illness to dictate your entire existence. You must control the disease, not the other way around. Maintain your routines, social life, hobbies, and work as much as your health and treatment schedule permit. Keep life normal.

These are, without question, the most essential pieces of advice I can offer for navigating successful treatment.


Thank you so much for the advice; it means everything during these difficult times. I am also wondering: how concerning is an increase in the CEA tumor marker from 6.9 to 7.9 in less than 15 days?
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#3779 ·
Kimberly Cox58 said:Thanks so much for the advice; it really helps while I'm going through this mess. I’m still wondering, though—how bad is it that my CEA tumor marker jumped from 6.9 to 7.9 in less than 15 days?

Look, markers aren't some foolproof diagnostic tool. They're just one piece of the puzzle used to track progress alongside things like imaging. A tiny fluctuation over a two-week window isn't worth losing sleep over. What actually matters is getting that surgery scheduled.
wiredcanyon39 wiredcanyon39 Active Member
74 messages
joined Jul 2020
#3780 ·
Has anyone here actually had to pull out a PICC line themselves? My doctor gave us the green light to just take it out, so now I'm sitting here wondering... is that something most nurses handle, or is it usually reserved for general hospitals?

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