Support resources for families dealing with cancer and other serious illnesses

Hannah James76 said:Thank you. It’s just obvious he’s doing terribly; I honestly don't know how else we can help him anymore... Aside from rushing him to the ER every few days... His labs have been pretty much the same for the last three months—just minor fluctuations—except now he's starting to build up fluid again.

What does his urination look like?
Have they checked his electrolytes, specifically things like Potassium, Sodium, Phosphorus, or Calcium?
Has anyone run an ABG—an acid-base status?
And has he had an EKG done yet?

Hannah James76Even though everything is looking pretty grim right now, there’s a chance things could get even worse if his electrolytes are out of whack. Usually, when someone is prescribed Furosemide, doctors will also put them on a potassium supplement like Kalinorm to keep everything balanced.
It's pretty obvious my dad is dealing with ascites.
It breaks my heart to see how much everything has progressed already.😢 Based on everything you’ve laid out here, it looks like Dad is unfortunately in the terminal stage.
vividsailor7 laid out a list of potential next steps, but honestly, you really have to weigh the pros and cons here. You need to ask yourself if any of this actually offers him a meaningful benefit, or if we're just talking about more unnecessary suffering.
Stay by his side as much as possible. Do everything in your power to make things easier for him—whatever that looks like. Right now, what he needs most is palliative care, which means... You have to stay on top of this: make sure they're getting IV fluids, glucose, and proper pain management. Don't take "no" for an answer—insist on it.
Hang in there. Be brave and try your absolute best to stay composed. I know exactly how hard this is when you're fighting for someone you love, but honestly, sometimes that desperate, overwhelming urge to fix everything only ends up causing more pain for everyone involved.

Carol Smith17 Asks:
So, I've got this 10x8 cm tumor, but my markers are all within the normal range and, honestly, I feel fine. Is there still a chance this could be malignant?

A single marker isn't some definitive diagnostic tool you can just bank on; you really need to hold off until the pathology report comes back.

Angela Wright As follows:
Hannah James76Even though everything is already looking pretty grim, there’s a real possibility things could take an even sharper turn for the worse because his electrolyte levels are also completely out of whack. Usually, when they put you on Furosemide, they'll prescribe some potassium too—something like Kalinorm.
It’s pretty obvious we're looking at ascites with my dad.
It absolutely breaks my heart to see how much everything has progressed already. It’s just devastating.😢 Based on everything you just described, I’m afraid we have to face the hard truth: Dad is in the terminal stage.
vividsailor7 listed out several things that could still be done—assuming they haven't been tried already—but honestly, you really have to weigh the options. You need to carefully consider how much any of this would actually help him versus how much it might just be more unnecessary suffering.
Stay by his side as much as you possibly can. Just be there for him and do everything in your power to make things easier. Right now, what he needs most is palliative care—and I mean real, aggressive palliative care. That means making sure he stays hydrated, ensuring he’s getting enough glucose, and being absolutely relentless about managing his pain. You have to insist on it. Don't let them overlook those things.
Hang in there. Please, just stay strong and try your absolute best to keep it together. I know exactly how impossible that feels when it’s someone you love, but honestly? Sometimes that desperate, overwhelming urge to fix them—to force a cure—ends up causing nothing but extra heartache and suffering for everyone involved.

You can't just bank on a single marker; it’s not a reliable diagnostic tool on its own. You really need to sit tight and wait for the pathology report before jumping to any conclusions.

Not when we're talking about kidney failure. You usually deal with hyperkalemia in those cases, which is one of the most frequent red flags that triggers the need for dialysis (alongside other clinical markers)—and that is exactly what Furosemide is meant to address, at least to some extent.

vividsailor7 said:Not in kidney failure. Hyperkalemia is usually present there, and that’s one of the most common triggers for dialysis (alongside other markers), which is exactly what Furosemide is meant to address (to an extent).

Do you think that could be the issue here?
In my opinion, the real issue here is the liver—specifically the ascites caused by the tumor. When kidneys start failing in a patient in this condition, from what I can gather as a layperson, we’re usually looking at just a few hours left. You don't even get the chance to get them on dialysis. And honestly, I haven't heard of it being standard practice to put terminal patients on dialysis anyway; it's just too expensive a "sport" to spend that kind of money on patients at this stage. 😢

Angela Wright said:Do you think this could be where the issue lies?
In my opinion, the real problem here is the liver—specifically the ascites caused by the tumor. When kidneys start failing in a patient like this, we’re usually talking about just a few hours left, at least based on what I’ve seen as a layperson. Honestly, they probably won't even make it to dialysis. And if I'm being blunt, I haven't heard of it being standard practice to put them on dialysis anyway; when you're dealing with terminal patients, dialysis is just too expensive an "extravagant sport" to waste resources on. 😢

I can't say for sure without seeing the actual lab results. Both creatinine and urea levels are significantly elevated, so knowing the electrolyte balance would be crucial. Regarding dialysis, the note only mentioned it as one potential indication—essentially explaining why potassium is prescribed alongside Fursemid (except in cases of renal failure). As you already pointed out, palliative care is the priority here. But frankly, I doubt they ran all these tests during the initial ER visit, which is why I suggested getting them re-ordered to get a much clearer picture of the situation.

What can I give my mom? She's having a hard time swallowing after her radiation treatments.
She’s wiped out. Just totally weak.
I tried Googling it, but honestly, nothing was helping.
Then I stumbled on this:

Marshmallow root tea and flaxseed tea are both good. Don't even boil them—just toss the herbs into cold water, let it sit for about thirty minutes to an hour while stirring it a few times, then strain it and have her take tiny sips.

-Razz- said:
I'm looking for something I can give my mom, but she's having a really hard time swallowing after her radiation treatments.
She's just completely wiped out.
I tried searching Google, but nothing really hit the mark.
Here’s what I stumbled upon:

Both licorice and marshmallow root help produce a soothing mucilage that coats the irritated and damaged linings of the throat, esophagus, and stomach.
I highly recommend them. They work wonders for chemo-induced nausea, too.

So, how do you actually make that flaxseed tea? Are you supposed to grind the seeds down first, or what...?

After fifteen days of agonizing waiting, my wife finally got her results back today, and I’m honestly still reeling from the shock. It’s Melanoma Cutis—specifically SSM, Clark Stage 2, with a Breslow depth of 1. How are you even supposed to process news like this?

I did a little digging online, and honestly, looking at the data for that stage of the disease, the prognosis actually looks pretty good.
She had this brown spot right on the top of her left ear that just kept getting darker over time.

They’re only digging shallow at one single spot on the station, right under the papillary dermis.
The tumor tissue doesn't reach the resection margins or the base of the excision anywhere in the examined sections.

In just one week, they’re heading into the hospital to finally get that cancer removed.

melloworca6 said:So, how do you actually make that flaxseed tea? Do you grind the seeds yourself or what?

You take a spoonful of seeds—you can buy them pre-ground at a place like DMU—and let them soak in a glass of lukewarm water for about an hour. Then just strain it and drink the liquid. Looking through this forum, I see plenty of people saying it helps. Personally, it was a lifesaver for my heartburn during pregnancy. Honestly, the relief hit me with the very first sip.

Charles Flores33 said:After waiting about 15 days, my wife finally got her results back today, and I’m still reeling from the shock... melanoma cutis (SSM, Clark 2, Breslow 1).

I've been doing some digging online, and it looks like the prognosis for that stage is actually quite good.
It started as this brown spot on her left ear—right on the top of the lobe—that just kept getting darker over time.

The cells are only shallowly invading the underlying papillary dermis.

She's headed to the hospital in a week to have that thing removed.

Beyond the stage being manageable, the location is also a plus. In my view, that shouldn't cause any major issues. Just make sure she stays on top of regular checkups and keeps a close eye on any other moles appearing on her body.

Angela Wright said:You just grind up some seeds (you can actually buy them pre-ground at DMU) and let them soak in a glass of lukewarm water for about an hour. Then you strain it and drink the liquid. Looking through the community forums, I see this helps a lot of people. Personally, it worked wonders for my heartburn during pregnancy. Seriously, the relief hit me with the very first sip.

Aside from the stage being manageable, the location is solid too. Honestly, I don't see why that should be an issue. Just make sure there's regular monitoring and keep an eye out for any other moles on the body.

Thanks for the optimism... I'm hoping everything turns out fine, too, though my stomach is doing flips and I'm running to the bathroom constantly.

Charles Flores33 said:Thanks for the optimism... I’m hoping everything turns out fine too, but honestly, my stomach is doing knots and I'm running to the bathroom constantly.

When you're dealing with any illness—especially cancer—the absolute most important thing is refusing to let it take the driver's seat in your life.
Right now, the bottom line is that the issue has been located and it’s going to be dealt with in time. Everything else is pure guesswork, and there’s zero point in driving yourself crazy trying to predict the unpredictable.

Angela Wright said:You take the seeds (one spoonful), grind them up—you can just buy the pre-ground kind at DMU—and let them sit in a glass of lukewarm water for about an hour. Strain it and drink the liquid. I see on the community forums that a lot of people find it helpful. Personally, it worked wonders for my heartburn during pregnancy. Literally, the discomfort vanished with the very first sip.

Thanks a ton. 😘

Someone close to me is starting chemo, so I wanted to check how this should be taken. 🙂 I'm hoping it helps even a little bit with the nausea.

Angela Wright said:With any illness, especially cancer, you absolutely cannot let it take over your entire life.
The most critical thing right now is that it's localized and can be removed in time. Everything else is pure speculation, so why bother driving yourself crazy worrying about things we can't control?

Dear Angela Wright,

I’ve spent the last two days scrolling through 384 pages of this thread in one breath since my wife got her test results back.

The work you do for your association and here on this forum is truly noble.
Until I started digging through various portals and forums to gather as much intel as possible, I had no idea just how evil and insidious this disease actually is.

I used to hear people mention melanoma and think, "Oh, it's just some kind of cancer," and leave it at that...🤷...
We’ve been avoiding tanning between 12 and 4 PM for years now, though my wife loves the sun, so she hasn't always been perfectly disciplined about those rules—even though she has all the classic traits for developing melanoma.

She has fair skin, plenty of moles, and green eyes.
🙂

Since the prognosis for this stage is apparently excellent, we’re staying optimistic that everything will turn out fine... I can see you've been through the ringer yourself and are incredibly well-informed, but I didn't quite catch what you meant by saying hers is in a "good" location?

I read somewhere that melanoma is much easier to treat on the limbs than on the head... but then again, isn't the ear technically part of the head?😢

Charles Flores33 said:Dear Angela Wright,

I’ve spent the last two days absolutely drowning in this thread, scrolling through 384 pages of posts since my wife finally got her test results back.

The role you play within your association and here on this forum is nothing short of noble.
Until yesterday, I hadn't the slightest clue just how vicious and insidious this disease really is. It wasn't until I started digging through various medical portals and forums, trying to scrape together as much information as possible, that the true nature of it hit me.

I’ve heard people mention melanoma, but honestly, most just toss the word around like it's some vague, scary mystery without actually knowing what they're talking about. They hear "cancer" and they stop thinking right there. It isn't just some abstract concept; it's a specific, serious type of skin cancer that you need to understand if you want to stay ahead of it.🤷...
We've been strictly avoiding the midday sun from noon to 4:00 PM for years now. It’s just common sense. My wife, however, absolutely loves soaking up the rays and usually heads out much earlier than I do.
She hasn't exactly been following the rules, though she ticks every single box for developing melanoma.

She’s got light skin, plenty of freckles, and striking green eyes.🙂

The prognosis for this stage looks incredibly promising, so we’re staying optimistic that everything will turn out alright. It’s clear you’ve been through the ringer yourself and really know your stuff, too. I was just wondering, though—what exactly did you mean when you said her melanoma is in a "good" location?

I was reading that melanoma on the limbs is much easier to deal with than when it hits the head... though, I guess technically, the ear is part of the head.😢

It’s right on the head, but the earlobe seems somewhat detached from the rest of the scalp. Plus, it doesn't look like it's heavily engorged with major vessels that would allow cells to spread rapidly through the body. Of course, I'm just speaking as a layman here, so I could be completely off base.

Honestly, things are looking incredible here—maybe even suspiciously good given our diagnosis. His bloodwork is stellar... he’s eating like a beast, laughing, staying active, and just brimming with energy as if nothing were wrong. Even after that intense weight loss, he actually managed to put on about 3 pounds at home. Of course, we are thrilled, and we’re doing everything in our power to maintain this momentum. We’ve stripped his diet down to the absolute healthiest essentials, though we allow ourselves one little exception a week if he’s craving something specific. He doesn't push back on it either, and on top of that, he's drinking beet juice, Noni, various teas... basically a constant stream of fruit and vegetables. I wanted to share this with all of you to remind you not to give up; keep fighting, because I truly believe there is hope for everyone. Best,

vividsailor7 said:It is difficult to say for certain without seeing the actual lab work—since both creatinine and urea levels are quite elevated, knowing the electrolyte balance would be essential. Regarding dialysis, there was simply a note mentioning it as one of the indications, which serves as a reason why potassium is being prescribed alongside Lasix (except, of course, in specific instances of renal failure). As you previously noted, he will require Palliative Care. However, I suspect they might not have run these specific tests during the initial emergency room visit, which is why I suggested requesting them again to get a more comprehensive view of his current status.

Here are all the results I have on hand: L 4.59, E 3.94, Hbg 128, Hct 0.35, MCV 88.8, MCH 32.54, MCHC 366, T 82, PV 0.79, INR 1.18, AST 266, ALT 201, CK 61, LDH 158, Glucose 6.2, Urea 19.3, Creatinine 261, Total Bilirubin 52.1, Direct Bilirubin 20.1, Amylase (serum) 81, Na 133, K 4.4, Cl 102, CRP 10.
Diagnoses: Hepatocellular carcinoma, Chronic Hepatitis B, Ascites, Grade II esophageal and gastric varices, Portohypertensive Gastropathy, Cholecystolithiasis, Malnutrition.

Status: Conscious, oriented, mobile, eupneic, afebrile, with normal peripheral perfusion. Head and neck appear unremarkable upon external examination. Lungs show normal breath sounds. Heart rhythm is regular with clear tones; BP 110/80 mmHg. Abdomen: distended above the level of the chest, ascites is present and non-tender; liver and spleen are not palpable, and bowel sounds are audible. Extremities show no edema, and arterial pulsations are normal.

A paracentesis was performed, evacuating 3.5 liters of clear ascites.

His urine output is poor, he isn't having much bowel movement, and he is barely eating anything at all.

Angela Wright said:Hannah James76, even though things look quite grim right now, there is a chance he feels even worse because his electrolytes might be off—specifically those found in a banana. Typically, when someone is prescribed Lasix, they’ll also be given potassium (like Kalinorm).
It seems pretty clear that your dad is dealing with ascites.
I am just so incredibly sorry that everything has progressed this quickly.😢 Based on what you’ve described, it sounds like your dad is unfortunately in the terminal stage of the illness.
vividsailor7 listed several options that could still be pursued—if they haven't been already—but please, take a moment to weigh carefully how much they would truly help him versus how much they might simply cause him additional suffering.
Just stay by his side as much as possible and make his life easier in any way you can. What he needs most right now is Palliative Care—which means ensuring he stays hydrated, receives glucose, and gets proper pain management... you really have to insist on that.
Hang in there, dear; stay strong and try to remain as composed as you can. I know exactly how difficult that is when it involves someone you love, but often, that intense, overwhelming desire to "fix" them ends up causing nothing but extra pain.

That marker isn't a reliable diagnostic tool, so we really should wait for the pathology results.

Thank you so much, dear, for everything. For now, we are just holding on; some days are better than others, but we are right there with him, doing everything we can to make him comfortable.

Hannah James76 said:Here are all the lab results I have: L 4.59, E 3.94, Hbg 128, Hct 0.35, MCV 88.8, MCH 32.54, MCHC 366, T 82, PV 0.79, INR 1.18, AST 266, ALT 201, CK 61, LDH 158, Glucose 6.2, Urea 19.3, Creatinine 261, total/direct bilirubin 52.1/20.1, serum amylase 81, Na 133, K 4.4, Cl 102, CRP 10.
Diagnoses: Hepatocellular carcinoma, Chronic Hepatitis B, Ascites, Grade II esophageal and gastric varices, Portal hypertensive gastropathy, Cholecystolithiasis, Malnutrition.

Status: Conscious, oriented, mobile, eupneic, afebrile, normal peripheral perfusion. Head and neck externally unremarkable. Lungs clear upon auscultation. Heart rhythm is regular, sounds are clear, BP 110/80 mmHg. Abdomen: distended above the chest level, ascites present, non-tender, liver and spleen are not palpable, bowel sounds are audible. Extremities without edema, arterial pulses normal.

A paracentesis was performed, evacuating 3.5 liters of clear ascites.

His urine output is low, he isn't having bowel movements, and he’s barely eating anything at all.

Instead of using a selective beta-blocker like Carvedilol, he could be put on Propranolol at a dose of 80mg twice daily (for the portal hypertension and those dilated veins in his esophagus). Given the diagnoses listed above, we should also consider adding anemia and Stage III/V chronic renal failure to the list. We could increase the Aldactone dose to about 200mg. His electrolytes are... well, they're okay, I guess. But despite all that, what he needs most right now is Palliative Care.
P.S. In case you don't know what these diagnoses mean: Hepatocellular carcinoma—liver cancer.
Chronic Hepatitis B—long-term Hep B infection.
Ascites—fluid buildup in the abdomen.
Grade II esophageal and gastric varices—swollen veins in the esophagus and stomach, stage 2.
Portal hypertensive gastropathy—gastropathy caused by portal hypertension (increased pressure in the portal vein), which is what causes the ascites and the swelling of the veins in the stomach and esophagus. He has a low platelet count, likely due to a Vitamin K deficiency.
Cholecystolithiasis—gallstones.
Malnutrition—undernourishment.
Stage III/V chronic renal failure—kidney failure, stage 3.
His urine output is weak because of the ascites.
If anything else is unclear, feel free to ask.

Did Ostojić just claim on FOX that this is the century of hospice care?
I wonder what he actually means by that... 😕