Support resources for families dealing with cancer and other serious illnesses

Jonathan Sanchez3 said:Hey everyone.

So, my dad has bone metastases, and lately, the pain has been absolutely brutal. Our doctor is telling us we need to get him to the hospital, but here’s the catch: how on earth are we supposed to transport someone who can't even move from a lying position using just our own car? The local emergency services basically told us they could send someone over to administer an injection, but honestly, that's way too weak to touch the kind of pain he's in right now. Does anyone know if there's such a thing as medical transport or some kind of ambulance service where you don't have to schedule everything two days in advance? We need someone who can transport him while he's lying down, or at least put him in a stretcher so he can be moved safely. My mom mentioned hearing about some kind of non-profit organization or community group that helps out in situations exactly like this, but she can't quite remember the name. Does anyone have any leads?

Thanks.

Gary Torres7 said:My dad was diagnosed with a tumor near his tongue three years ago. Since then, he's been through radiation and chemo. But every single year, that damn tumor just keeps coming back. His tongue is swollen up and he can't even eat. Has anyone dealt with this kind of thing? How did you handle it?

Jonathan Sanchez3 said:I called a private medical transport service to check prices, like from the Thorn area over to the Rib hospital......$87

Our doctor isn't incompetent at all—she’s actually excellent. My dad has been essentially living on painkillers ever since they found bone metastases. Right now, his dose is at 125 mg over the last few days, and he’s taking Ketorol too. He was given Sevredol, but it made him feel terrible; he couldn't breathe and his lungs felt heavy. Yesterday, the doctor even prescribed 600 mg of Ibuprofen, but even after taking that, the pain didn't budge. We ended up throwing him in the car and rushing him to the ER at the Rib, where they just left him sitting in a wheelchair in some little side room in agony for a good hour. Finally, they gave him two doses of morphine and Tramal. Even then, he said the pain wasn't letting up, so when we got home, I gave him more Ibuprofen and Ketorol. That seemed to help. In fact, today he can actually walk, whereas yesterday morning he couldn't even move in bed. We went to see the oncologist today to try to get him admitted for inpatient care and palliative radiation, but his regular oncologist isn't there, and the covering doctor was just dismissive. They told us to wait until Monday to see his primary doctor, but apparently, she doesn't return until June 1st, so we’re just stuck waiting until she gets back.
It feels like yesterday's infusion and the morphine are working for now, but once that wears off tomorrow or the day after, we'll be right back in this nightmare... I honestly don't know how to help him through all of this.

Jonathan Sanchez3 said:I called a private medical transport service to check prices, for example, from Thorn to Rib......$87

Our doctor isn't incompetent at all; she’s actually quite excellent... My dad has been on patches since they found bone metastases... Currently, his dose has been at 125 mg over the last few days... On top of that, he's taking Ketoral... He was also given Sevredol, but it made him feel terrible—he couldn't breathe properly, it felt heavy in his lungs... Yesterday, our doctor even gave him 600 mg of Brufen, but after taking it, the pain didn't subside at all... So we eventually put him in the car and drove him to the ER at Rib, where they just left him sitting in a wheelchair in some little room, in agony, for a good hour. After that, they finally gave him two doses of morphine and Tramal... Even then, he said the pain wasn't letting up, so once we got home, I gave him more Brufen and Ketoral... Only then did he start feeling better... Today he can actually walk, whereas yesterday morning he couldn't even move in bed... We went to see the oncologist today to try and get him admitted for hospital care and palliative radiation therapy... But his regular oncologist isn't there, and the doctor covering for her was just dismissive... They told us to have him contact his own doctor on Monday... but then they mentioned she doesn't return until June 1st... so we're stuck waiting until she gets back.
Today, the infusion from yesterday and the morphine seem to be working, but tomorrow or the day after, when that wears off, the whole cycle will just repeat itself... and I honestly don't know how to help him through any of this.

slyowl10 said:My father is battling pancreatic cancer with liver metastases, and things aren't looking good. For the last two weeks, he’s been dealing with these brutal, aggressive pains in his lower abdomen. He went in for chemo yesterday, and his oncologist told him he needs to see a surgeon immediately. Right now, he's at the hospital getting run through every test imaginable. Honestly, I feel like I’m losing my mind waiting for these results to come back and hearing what the verdict is... Doctors are actually wondering if it's a gallstone?! How dangerous is that given everything else he's fighting?
By the way, I don't live in the same state as my parents, and it absolutely breaks my heart that I can't be there to help him directly...
I fly home every single weekend to try and lift his spirits, but watching him go through these pain episodes is the hardest part of all...

slyowl10 said:Is there a chance the metastases have spread to other organs, causing all this pain?

slyowl10 said:The tumor shrunk from 2.5 cm down to 1.7 cm, but there are metastases in the lymph nodes, which is why the pain is so intense. We're currently waiting on the tumor marker results. Can anyone explain what it actually means when the disease hits the lymph nodes?

Elizabeth Gonzalez55 said:There was this one woman, I think her name was Vesna Vulovic, who actually survived a plane crash from 33,000 feet. Pretty sure she’s the first person you’d think of if you were stuck on a plane that started falling apart.

Look, just for the sake of anyone actually reading this, I’m not out here pushing my own opinions regarding chemo as an option for treating melanoma. I’m just passing along information I got straight from the horse's mouth: Dr. Djokovic (Mayo Clinic), Dr. Stanec (Cleveland Clinic), Dr. Juretic (Johns Hopkins), Prof. Dr. Schadendorf (German Cancer Research Center), and Prof. Dr. Morton (JWCI santa Monica, USA). They told me this face-to-face; there’s zero room for "misinterpreting" what they said.

Chemo is usually reserved for the terminal stage, used as a palliative measure where the response rate is maybe 10-20%. And even then, "response" basically just means you buy some time—maybe up to six months. We aren't talking about a cure here. I'm talking about classic chemotherapy using DTICem. Maybe the case you're thinking of is different, and they're giving that guy something else entirely, but I don't know enough to weigh in on that. And let's get one thing straight—I never said chemo doesn't help anyone. Sure, maybe there are outliers. Personally? I don't know a single person it worked for, though I do know about twenty people who aren't with us anymore.

I would be super grateful if you could show me this guy's medical records—but hey, no rush, maybe in three years. While you're at it, feel free to include a little summary of his quality of life while he was on that treatment. Because in the last three years, my husband has gotten married, had two kids (the second one should arrive, Bog willing, in about two weeks), graduated from Georgia Tech, and changed jobs twice. Every Saturday he’s out hiking, staying active, traveling... you name it. And there isn't really a "before" or "after" with alternative therapy; it’s just something we’ve done continuously since the diagnosis and will keep doing for the rest of his life.

I have never called him cured, and I never will. The cancer is in him, just waiting for its moment. It would be incredibly arrogant of me to talk about a "cure." That's why I always say he's doing well right now. I thank Bog every morning. I don't make long-term plans. Everything could go south tomorrow, and I'm painfully aware of that. But I hope, and I believe.

So yeah, that's that. I'm done arguing about this.

briskbison27 said:I need some help here!

My mom had kidney cancer surgery back in 2001.
For the last few months, she’s been feeling off, but she kept fighting going to see the doctor.
Now: there's a mass on her remaining kidney (they aren't sure if it's a new primary tumor or a metastasis), plus metastases in her lungs and likely in her brain (she's having neurological issues in one arm and leg).
Subjectively, she isn't in pain and feels relatively okay.
The attending physician is young and seems totally indifferent; we're planning to talk to a more senior doctor next week.
She’ll likely be discharged soon after some tests—possibly a brain CT (though I don't really see the point?), and a biopsy of the kidney mass to figure out if it's primary or secondary.

A few questions for anyone who can help:

1. Should we accept oncological treatment? (I'm a layman, but from what I understand, chemo isn't very effective for kidney cancer).

2. Should we insist on cytostatics (which are supposedly the only things somewhat effective)?

3. Should we refuse everything and switch her to an exclusively Macrobiotics diet while she's still relatively strong, perhaps adding some Noni juice?

Keep in mind she's 64 and diabetic.
Psychologically, she has the kind of temperament that would actually stick to an alternative diet.