Support resources for families dealing with cancer and other serious illnesses

quietpilot87, hold on a second....

Regarding digestion and milk... the reason people say milk "isn't good" is because it's just really hard to digest—it can be super tough on your gut... you should look into yogurt or probiotics—like Bioactive, Activia, or Sensia (honestly, nothing wrong with Bioactive, and I think it's probably the most budget-friendly 😉)
I'm not entirely sure what your mom is dealing with specifically, but moving forward isn't exactly recommended for anyone who has had colon cancer surgery: you really need to focus on whole grains and plenty of high-fiber foods

quietpilot87 said:About a month and a half ago, we were told my mom was finished.
Now she just lies there, covered in painkiller patches, and the days are... unpredictable. Some are catastrophic, others are manageable.

From where I’m standing, my mother is an incredibly strong and resilient woman who doesn't go down without a fight. I’ve been doing a lot of thinking lately—about modern cancer therapy, about life in general. For me, nothing is ever going to be the same again, especially my life and the way I navigate it. I’ve replayed her entire life in my head a thousand times, comparing it to mine (to ours), wondering how many times things could have gone differently, how much we might have been different people. Sometimes those thoughts haunt me, but I manage. Occasionally, I find myself questioning why this happened, why we couldn't just live like any other normal family—why my brother and I couldn't follow our own paths while my parents grew old together in some little house by the coast, which is exactly what they wanted...

The truth is, you just can't control life. Not one bit.

I also wanted to ask for some advice—what should I feed someone who is constantly bedridden and mostly refuses digestive aids, provided she isn't having major issues with constipation?
Supposedly milk isn't good for her, but she absolutely loves it.
Thanks 🙂

It's the exact same thing here... I keep playing these mental movies, imagining all sorts of scenarios... and I wonder why?
Honestly, today I was thinking how much easier it would be if my dad just said he wanted to die, instead of him fighting to live against all odds! I feel like that will is actually the only thing keeping him tethered to this world. But then again, what good is a desire when you're in such a state?
Anyway....
Can Mom eat normally? Should we give her pears, or maybe dried prunes soaked in warm water, or maybe some Donat?
That helped Dad a little bit, but after that, nothing worked. Now, since it's happening on its own... starting today, he's on Prosura...

Lisa White54 said:My husband started taking Medrol after finishing chemo. He began at 32 mg, then dropped to 16, then 8, and finally down to 4 mg. He was on it for almost three years—though for this last year, he hasn't taken any Medrol at all, since he tapered off gradually. First it was every other day, then every third day, and then he just stopped. Since he quit, he hasn't had any issues. He actually had quite a few problems while he was still on it because he was taking it for so long—three years is a long time, I guess. His stomach was incredibly bloated, and his skin started acting up; rashes, itching, redness... things like that. Ever since he stopped Medrol, the bloating is gone and his skin isn't nearly as sensitive.
He took the Medrol based on what his doctor recommended right after finishing his chemotherapy sessions.

I was told Medrol is meant to help with nausea and headaches during chemo—it’s basically the same thing as the dexamethasone I was getting while undergoing radiation.
Right now, I'm "listening" to that one doctor who told me I could just take it as needed. 🙄 And honestly, the situation is such that I don't take it at all because I don't have headaches, nor do I feel sick. 🙂

Your husband was on it for a seriously long time—meanwhile, I've been panicking over just 7 or 8 months. 😍 To be honest, I really don't like it because of how much water it makes you retain—which leads to that bloating—and I haven't even managed to get rid of the bloating from the dexamethasone yet. 😠
I was recommended 12mg.

Rose, what’s the latest on your end? Have you guys had the PET scan done yet, and how is your husband holding up? Is he starting any new treatment? I really hope everything is going okay.

I had my PET scan this past Thursday, and I’m supposed to get the results in the mail today. I’ll give you guys an update once they actually show up. Honestly? I'm a total wreck. Just terrified.

Regarding the Medrol, from what I understand, it’s a corticosteroid, so it isn't really for pain relief—it’s more about fighting inflammation. My husband ended up taking Medrol because he developed post-radiation fibrosis six months after his treatment, just to help dial back the inflammatory response.
And it worked wonders. He didn't deal with any major inflammation at all.

So, I just got my PET scan results back.
No pathological accumulations anywhere, except right around the area of my right vocal cord. There’s this asymmetrical buildup of FDG in the vocal cords, with the right side showing a more intense SUVmax of 5.5.
Everything else seems to be within normal limits.
I called my doctor over at Jordan, and he basically told me it’s nothing—just suggested I go get a laryngoscopy, but he's totally convinced there's nothing wrong.
I’m not really sure where the best place would be to get that checkup done, maybe at the MD Anderson Cancer Center in NYC?
Honestly, I can't say the doctor actually calmed me down. I was completely blindsided when I first read the report. At the same time, I feel like a PET scan doesn't just lie, you know? Like, what does this even mean? Why would they flag something if it isn't malignant?
I'm losing my mind here.

Grace Grant10 said:So, now everything is a drug. A drug is strictly a pharmaceutical product—nothing else—and it has to be chemical, not natural.

So, what, most antibiotics aren't drugs in your book?
Honestly, after saying something like that, nothing else you write carries any weight.

And this part has nothing to do with Grace Grant10's post.
I would never dream of belittling how anyone chooses to heal. Anyone helping is doing good work. I’ve dealt with illness in my own family—and still do—and if traditional medicine fails, you try everything else. My best friend once had tests come back saying she was basically at death's door, only to find out they'd mixed up her results; the woman who was supposedly on her deathbed ended up booking a summer vacation to celebrate being alive. Another friend outlived even the most pessimistic medical forecasts thanks to prayer and faith.
Fighting an incurable disease is hard enough without people constantly implying we're uninformed, brainwashed, primitive, or being conned. It doesn't matter if that pressure comes from a doctor, an alternative practitioner, or someone else entirely. You need strength, willpower, patience, acceptance, and above all, love. That's what I wish for all of you.🙂

Lisa White54 said:I just got my PET scan results back.
There aren't any pathological accumulations anywhere except in the area of the right vocal cord. There's some more intense FDG uptake registered asymmetrically in the vocal cords, specifically more intense on the right side at SUVmax=5.5.
Everything else falls within normal limits.
I called the doctor over at Jordan, and he told me it’s nothing—that I should get a laryngoscopy, but he’s certain it isn't anything serious.
I have no idea where the best place would be for that exam; maybe at the MD Anderson Cancer Center in NYC?
I can't say the doctor really calmed me down. Honestly, I was in total shock when I first read the report. At the same time, I feel like a PET scan doesn't lie, so I don't know what this actually means. Why would they flag something if it isn't malignant?
I'm losing my mind.

My own experiences with PET scans have been incredibly contradictory. In short, an ultrasound once showed something that the PET completely missed. Regardless, go see an ENT; I bet Salata is the best when it comes to that stuff. Don't spiral out of control before you have to. Doctors know a bit more than we do, and it doesn't necessarily mean everything a PET flags is malignant. Just take it one step at a time—get the checkup done, and whatever it turns out to be, you'll deal with it. Panicking won't help anyone.
Let's bring some positivity to this page, people: clap... everyone seems so worked up, and cancer thrives on that kind of vibe.

Angela Wright said:My own run-ins with PET scans have been super inconsistent. Basically, an ultrasound picked up stuff the PET completely missed. Look, just go see an ENT—I'm betting Salata is your best bet there. Don't lose your mind before you actually know what's up. At the end of the day, doctors know a bit more than we do. Just because a PET shows something doesn't mean it's cancer. Let's just take it slow—get the checkup done first, then deal with whatever comes out. Panicking isn't going to help anyone.
Let's bring some damn positivity to this thread, people. Seriously... everyone's getting all worked up, and honestly, cancer feeds on that kind of vibe.

You're right. We need to reel it in and try to stay level-headed.

Not everything has to be cancer. People need to be way more careful when it comes to making a diagnosis. You absolutely have to seek out a second opinion—and for heaven's sake, don't mention your previous tests, because doctors tend to just parrot back whatever the last person said instead of actually looking at you.

Amy Hayes28 said:It’s the same story here... I keep playing back the movies in my head, imagining all sorts of scenarios... and I find myself wondering why.
I was actually thinking today about how much easier it would be if Dad just said he wanted to die, rather than him fighting to live despite everything! It feels like that williness is actually the only thing keeping him going. But then again, what good is desire when you're in a state like this?
Well....
Is Mom able to eat normally? Could you give her a pear, or some dried prunes soaked in warm water, maybe some Donat???
That helped Dad a little bit, but nothing else worked after that. Now, out of nowhere... starting today, he's on Prosura...

Hey honey.... I didn't even dare send you a PM... I honestly thought the worst had happened since you hadn't checked in.
What's the actual situation right now?

Jonathan Doyle55 said:Not everything has to be cancer. Be careful with those diagnoses. Definitely go get a second opinion—just don't mention any previous tests, because they just tend to parrot back whatever was already said.

We haven’t actually gone looking for a second opinion. Honestly, I wouldn't even know where to go, and I'm not sure it would even matter since everywhere we go (no matter what kind of scan we're getting!) they insist on digging up all the old medical records. My husband has been dealing with this for four years now, so saying I don't have documentation isn't exactly realistic. If anything, all I have are discharge papers that are super vague. When my husband went in for his last CT scan at our local hospital, he didn't bring a single thing except for his most recent discharge summary. And man, did they jump him for it! He (who's got a pretty sharp tongue, let me tell you!) basically snapped back at them: "What are you guys doing, just transcribing? Actually write down what YOU see!"
In response to that, they just opened fire on him, eventually trying to convince him that he was, like, *super* sick. It totally crushed him. He spent ten days stuck in bed just spiraling, wondering why they were telling him things were so bad. It took everything I had to calm him down.
So yeah, I really don't know what the right move is here.
We're going to go ahead with the laryngoscopy exam, and then we'll just see what happens. Until then, may God help us.

Lisa White54 said:We haven't actually gone looking for a second opinion. Honestly, I don't even know where I would go, or if there would be any point, because everywhere we turn—no matter what kind of search we run—they just demand old medical records. My husband has been undergoing treatment for four years now, so saying I don't have documentation feels impossible. In fact, all I really have are discharge summaries, and even those are pretty sparse. During his last PET scan at our local general hospital, he didn't bring anything except his most recent discharge letter. And then they attacked him for it! He’s quite sharp-tongued, so he shot back: "What exactly are you doing, transcribing? Just write down what you see!"
In response to that, they opened fire on him, eventually trying to convince him that he was just *so* incredibly sick. It sent him straight into a depression; he spent ten days stuck in bed, spiraling, wondering why they were telling him things were so dire. It took everything I had to calm him down.
So, I'm honestly lost as to what the right way to handle this is.
We’re going to undergo a laryngoscopy exam, and we'll just see what happens. Until then, may God help us.

To get a second opinion, you need to have your discharge papers, X-rays, CT scans, or PET scans ready. By law, the hospital is required to provide you with all your medical documentation. If they refuse to hand it over, reach out to the Jedro Association and we will try to intervene. And if you want us to help you coordinate getting a second opinion, please let us know.

If I can offer one piece of advice from my own experience: ALWAYS, and I mean always, seek a second, or even a third, opinion.

Lisa White54 said:I also feel like a PET scan doesn't lie, though I'm not entirely sure what that implies. Why would they flag something if it isn't malignant?
I think you're totally mistaken.

You’ve got it wrong—speaking from my own experience, I can tell you that a PET scan often produces false positives. My husband actually had several lesions surgically removed because they were flagged on his scan, only for the pathology reports to confirm later that they were completely benign and healthy.

A PET scan doesn't actually detect malignancy itself; rather, it identifies cells that are accumulating radioactive sugar. That doesn't just happen with cancer cells; it happens with anything where there's high metabolic activity, like inflammation or even a benign tumor.

So, please keep in mind that a result like this really might not mean anything at all, so try to have faith and don't let panic take over—that's truly the most important thing!

slyseal28 said:To get a second opinion, you need your discharge papers, X-rays, CT scans, or even a PET scan. By law, the hospital has to hand over all your medical records to you! If they give you any grief about it, hit up the Association and we'll try to step in. And hey, if you want us to help you actually set up that second opinion, just reach out.

My advice, based on what I've dealt with personally: ALWAYS, and I mean always, go looking for a second—if not a third—opinion.

Thanks so much, I'll reach out once I've had a chance to talk things over with my husband. He's going through a really rough patch right now. He's been stuck doing endless testing over the last two months. He's pretty shaken up, and I just need some time to help him pull himself together.

Elizabeth Gonzalez55 said:You've got it wrong—speaking from my own experience, I can tell you that a PET scan often gives false positives. My husband had several lesions surgically removed based on that scan, but the pathology later confirmed they were negative, meaning totally healthy tissue.

A PET scan doesn't actually spot malignant tumors; it just picks up cells that are gobbling up radioactive sugar. And that isn't just cancer cells—it could be anything happening in the body, like inflammation or a benign tumor.

So, keep in mind that those results might not actually mean anything. Have faith and don't let panic take over—that’s the most important thing!

I'm not panicking, it's just confusing. I can't make sense of any of this. The CT showed one thing, the bronchoscopy showed something else, and now the PET scan is saying a third thing. It's just throwing me into total limbo. And don't even get me started on my husband.
Hope is what has kept us going all this time. We're going to get back on our feet and fight for Tomorrow. I'm feeling better today and I'm soaking up all the positive energy I can so I can stay Braveheart and keep holding my husband's hand through this.

So, I figured it was finally time for me to chime in too, after about 6 months or so...
Dad finished 4 cycles of chemo and they did a bronchoscopy and a CT
the results showed the primary site shrank just a tiny bit, but now there are two metastases in the bones and in his left lung.
Today, Dad tried starting a second line of chemotherapy, but he reacted so badly to it—he almost slipped into a coma—so the doctor pulled the plug on the treatment altogether and basically said he’s done with chemo from here on out.
On top of Dad's terrible mental and physical state, Mom's recent pancreatic cancer diagnosis just added more weight to everything...
I'm looking for some kind of advice, anyone I can talk to... because according to the doctor, he's already been written off.

Here's my bad news too. So, my mother-in-law had breast cancer surgery two years ago, and she just had a scintigraphy—thank God, everything looks good. But this year, around July, my father-in-law was diagnosed with Stage IIIB bronchial cancer. He’s been doing chemo and actually handled it pretty well. They originally said three cycles, then bumped it to four, and now that he's finished those, they're saying surgery is an option. He's been at the hospital near Jordan since yesterday, and it looks like he'll probably have the operation tomorrow. Does anyone know anything about this kind of surgery? Any info would help.

Thomas Alvarez19 said:So, I guess I'm finally checking in after about 6 months.
Dad went through four rounds of chemo, and they also did a bronchoscopy and a CT scan.
The scans came back, and honestly, it’s a bit of a mixed bag. The main tumor actually shrank just a tiny bit, which is something, I guess, but there’s a catch. Two metastases popped up—one on the ribs and another one on the left lung. Just when you think you're making progress, the body decides to throw a curveball.
So, Dad tried taking that second round of chemo today, and man, it went south fast. He reacted so badly he almost slipped into a coma or something. The doctor saw how bad it was, pulled the plug on the whole thing, and basically told him they aren't sending him back for any more chemo. It’s just one of those things, I guess.
Dad's mental and physical health was already hitting rock bottom, and then Mom discovering that pancreatic cancer just added fuel to the fire.
I need some advice... who should I even talk to? Because according to my doctor, I'm basically a lost cause.

This is a seriously heavy situation. Honestly, I don't even know where else you could turn. Unfortunately, you just have to deal with it. Just try to make sure every single moment is packed with love. Illness is unpredictable and sneaky—it’s one of those things where you can never truly see it coming. You’re never on solid ground with it. There's no way to predict what tomorrow will look like. That’s why you should spend as much time as possible with your parents today; give them all the love and attention you've got. And then, every new morning, you start over again. Forget about making plans or trying to forecast everything. It’s exhausting and, frankly, pointless. Just stay brave and stay strong.

My father-in-law is fighting a bronchial tumor and things have taken a massive turn for the worse over the last few days—he’s coughing up blood, he’s completely wiped out, can't eat a thing, and is basically living on IV fluids. We’ve been getting all sorts of conflicting info about different supplements, and my mother-in-law even reached out to that Bioenergeticist, Mr. Keru, but he was pretty rude and just turned her away. So, we heard about this IP6 stuff and we're heading out to track it down now to see if it helps. We managed to get a contact number for Maja Mirt Bicanic, but she isn't picking up... it's just tough...