Support for families dealing with cancer and other serious illnesses (Part II)

We need to keep a close eye on him right now to make sure he doesn't develop any pleural effusion. Is he already on Furosemide?

Angela Wright said:We really need to monitor him closely now to prevent any pleural effusion. Is he already on Furosemide?

I'm not entirely sure what all his medications are yet; we’re heading out there this weekend, so I'll take a look at the lab results then.

He also needs Megestrol, but it's nowhere to be found—apparently, there's a shortage on the market.

Amanda Miller69 said:I'm not entirely sure what all he received yet. We're heading out there this weekend, so I'll take a look at what the report actually says once we're back.

He’s going to need Megestrol too, but it seems to be nowhere to be found. They’re claiming there's a shortage in the market. Is it always like this?

Zachary Howard2, I have no idea where you guys are located or what's convenient for you, but we managed to track some down in Dug Sela for my mother, just a day or so after we spent half the day scouring the area around the city.

Rachel Williams said:I have no idea where you guys are located or what's convenient for you, but we picked up Fiza for Mom in Dug Sela, just a day after we spent half our time driving around the outskirts of Chicago.

We’re on the west side of town, but it’s honestly no big deal to drive out to Dug Sela—it’s right on my way when I head toward Daruvar anyway.
Which pharmacy did you go to? I might give them a quick call to see if I can set a reservation.

I managed to track it down in Dug Sela and got everything booked. Thanks for the tip, Rachel Williams 🙂.

Amanda Miller69 said:I found it in Dug Sela and booked it. Thanks for the tip, Rachel Williams 🙂.

Anytime. 🙂 I'm glad you managed to get it sorted. 🎉 I'm not sure what the situation is with your father-in-law, but my mother can barely eat a single bite without Megestrol, whereas with it, she's doing quite well. 🙂

Hey, if anyone happens to be looking for some Vidatox, just shoot me a private message. I've got two bottles sitting here that, unfortunately, didn't get used up. Cheers.

My father is currently on Xeloda and Avastin. The treatment was working quite well until about six months ago... since then, his markers have been climbing by roughly 10 points every single month. Now they’ve hit around 100.
Our doctor keeps insisting it’s nothing significant, saying it doesn't even matter.
How could it not matter?
He flat-out refused us—basically told us there’s no point in seeking treatment in Germany—even though the specialist in Germany said they could handle the liver metastases if we just addressed the primary tumor here first. He won't offer any experimental drugs and refuses to change the current regimen, regardless of how much those markers rise.
What specific criteria are used to decide if a patient qualifies for FOLFOX?

For context... we're dealing with a mucinous adenocarcinoma of the colon. Initially, the tumor was about 5cm and there were three metastases on the liver; the largest was 10cm, but now it's down to 4cm, and the other two are barely even mentioned in the reports anymore.

I took the results to a private specialist, and that doctor told me our current physician should have switched the therapy already. He has no idea why he hasn't. He also brought up the possibility of surgery, which our doctor rejected from the very beginning and still won't even suggest, despite the excellent response to the therapy so far.

That’s my perspective, and I've had it confirmed by a private doctor, so what on earth is our doctor doing?? I honestly have no clue.
So, is it actually difficult to get onto FOLFOX? Why hasn't he switched him over yet?

It’s because he’s accepted that the disease has reached a stage where remission isn't back on the table, so he’s just looking to slow the progression down. Xeloda is doing the heavy lifting there, while Avastin doesn't seem to be doing much of anything anymore.
You need to confront him directly. Tell him you aren't interested in just "slowing things down"—you want to fight for surgical options that could actually buy more time and improve his quality of life.
Unfortunately, under the Medicare system, they look at the budget first and the patient second.
If you want better care and you have the means to pay for it, cut through the noise right now and look into private options or out-of-network specialists. Within the Medicare framework, you shouldn't expect much more than this without constant fighting and endless headaches.

And I really thought that was how it would go... that was my biggest fear, honestly, but I kept hoping against the odds that I was wrong..
thanks.. we'll talk to the doctor and see what the next steps look like..

Rachel Williams As follows:
Anytime. 🙂 I am glad to see you succeeded. 🎉 I’m not sure what the situation looks like over at your father-in-law's place, but my mother can barely manage to eat anything unless she's on Megestrol—with it, she seems to be doing much better. 🙂

I honestly can't say for certain myself; he eats just a little bit at a time, but everything absolutely has to be blended and finely minced. The worst part, though, is that coughing fit that hits right after.
On’s strength has completely bottomed out. He spends the entire day confined to bed, and he's reached a point where even getting up to the bathroom isn't an option anymore. His mother has had to resort to washing him in a washbasin just to keep him clean.
I suggested she look into hiring a home health nurse, just to take a little bit of the weight off her shoulders.
He’s talking a little too, mostly because he clearly has nothing better to do with his energy.

Amanda Miller69 said:I honestly don't know; he eats very little, and even then, everything has to be blended and finely minced... the coughing fits afterward are the absolute worst.
Beyond that, he’s just weak. He spends the entire day in bed. He can't even make it up the stairs to the bathroom anymore, so his mother has to wash him in a basin.
I suggested she look into hiring a home health nurse to take some of the weight off her shoulders.
He barely speaks; I suppose even talking feels like an exhausting effort now.

Things aren't quite at that stage for us yet—my mother is still completely independent—but reading this thread feels like a grim sort of mental preparation for what lies ahead with her...
She was diagnosed with Stage IV lung adenocarcinoma with lymph node metastases about a year ago. She went through chemotherapy and radiation, but there hasn't been any real progress. To be honest, over this past year, nothing has changed regarding the size of the tumors—not better, not worse, thank God. Her markers are nearly perfect, so we’re just praying things stay this way for as long as possible, especially since Mom is back home in the States and I'm living here in Austria.

I've read quite a few of your posts on this forum, and I truly hope that your father lives long enough to see his grandchildren grow up.🙂

Amanda Miller69 said:I’m honestly not sure—he eats just a little, but everything has to be blended and finely minced... and that cough afterward is just the worst.
Beyond that, he’s incredibly weak—spent the whole day in bed. He can't even make it up to the bathroom anymore, so Mom is having to wash him in a basin.
I suggested she look into hiring a home health nurse to take some of the weight off her shoulders.
He barely talks; I suppose even conversation is exhausting for him now.

To make things easier for everyone, just check with the local health authority—patients have a right to home care (especially oncology patients) within the scope recommended by their primary physician, specifically to assist with daily hygiene.

Also, there is the option of a PEG tube for feeding—definitely worth discussing with his doctor.

Thirdly: Angela Wright—the patient isn't eligible for an anti-decubitus mattress through insurance.

Rebecca Johnson said:Thirdly: Angela Wright—patients don't have the right to get an anti-decubitus mattress on insurance covers.

To be honest, I don't recall ever making that claim. I was talking about borrowing or renting them.
That said, I did put in the work and looked it up on Google, and it isn't quite how you're framing it. There's a specific Medicare regulation stating that one can obtain one if the patient's condition meets certain clinical indications.
You can find those exact same regulations in a PDF directly on the Medicare website.

Who qualifies for an anti-decubitus mattress?
For an anti-decubitus mattress over 10 cm (including a compressor)—which can be covered by Medicare—the criteria are:

Individuals living with tetraplegia;
Completely immobile patients with neurological deficits distal to the cervicothoracic junction resulting from a neurological disease.
As for an anti-decubitus mattress up to 10 cm (with or without a compressor), which Medicare may cover:

People with paraplegia who also present with stage 3-4 pressure ulcers across multiple locations due to sensorimotor loss;
Or completely immobile individuals presenting with stage 3-4 pressure ulcers in several different areas.

Look, anyone dealing with brain tumors or metastases that result in neurological deficits—specifically those who have become immobile—should absolutely qualify under the current indications. I’m not an expert here, but quadriplegia or paraplegia can manifest across a wide spectrum of different diseases and medical conditions. In my view, a palliative care patient definitely fits the criteria. It feels to me like the regulations are written with enough ambiguity to allow for some interpretation. Ultimately, everything seems to hinge on how well a local nursing facility can frame the case, whether a specialist is willing to write a strong recommendation in the medical history, and finally, the sheer willpower and ethics of the committee over at Medicare.

Unfortunately, that’s just how things work here. It feels like we're forced to step up and handle everything ourselves. There’s really no point in having paid into Medicare for 42 years if they’re still going to play games and draw arbitrary lines between which critically ill patients qualify for help. I’ll start looking into renting a pressure relief mattress for him.
Togtherwise, I’m at a loss for what we’ll do when things take a turn for the worse. My mother-in-law simply can't manage his care on her own. Does anyone know if there’s a decent geriatric unit in the Daruvar area, or are we stuck choosing between nothing or some overpriced, low-quality nursing home???

Rachel Williams said:Things aren't quite like that for us yet—my mom is still completely independent—but reading this thread feels like a sort of mental preparation for what’s eventually ahead with her...
She was diagnosed with Stage IV adenocarcinoma of the lung with lymph node metastases about a year ago. She went through chemotherapy and radiation, but we didn't see any real movement. Honestly, over this past year, there hasn't been much change at all, for better or worse, thank God. Her markers are nearly perfect, so we're just hoping things stay this way for as long as possible, especially since she's back home in the States and I'm out here in Austria.

I've read quite a few of your posts here, and I truly hope your father lives to see at least the grandchildren🙂

Thank you.🙂
I really hope your mom manages to keep that independence for as long as possible.
My father-in-law initially seemed to recover well after his surgery, but between the chemo failing to work and the disease itself—specifically the recurrence and those metastases—things have taken a turn, and now we're just waiting to see how much longer he can hold on.
My sister-in-law is due to give birth in two weeks, so we're hoping he makes it to at least that milestone. My own due date isn't until early December, and I honestly don't believe he'll be around to see mine😢.

My brother-in-law coughed up blood this morning, so they rushed him over to the hospital in Pakrac and left him there.
My husband says they haven't given them any updates yet. What kind of situation should we be bracing ourselves for?

Cancer has returned in our family—this time spreading to the lungs, though it started as colon cancer. They’ve already operated on one lung metastasis and removed a lymph node, but there's still one left in the abdomen that they plan to tackle with chemotherapy.

Since we're dealing with an older loved one who is struggling immensely with the mental toll of all this—and because the doctors have been giving us such incredibly vague information—I'm reaching out here to see if anyone can help.

The big question is about the treatment itself; she says this chemo will be different from the standard stuff, since she has to stay in the hospital for 48 hours after every single infusion.
The doctor mentioned this to her before heading off to the coast—apparently, they're still waiting on some official approvals from the Department of Health—and now she's just spiraling because she has no idea what kind of chemo this actually entails.

Does anyone know anything about this type of treatment?