Support resources for families dealing with cancer and other serious illnesses

graniteseal50 said:Hi everyone. My mom was diagnosed with pancreatic cancer about a month or two ago. By the time the latest test results came back, it had already metastasized to her liver. About a week and a half ago, she underwent chemotherapy, but just two days after the treatment, she started vomiting blood and had black stools—clear signs of internal bleeding. From what I gathered from the doctor, the cancer has spread to the stomach and duodenum. To make matters worse, three days ago she developed a blood clot in her leg, and the doctors are trying to break it up with injections. Since Mom can't keep any food down without vomiting, the doctors are suggesting they install a bypass—from what I understand, so food goes straight to the intestines instead of the stomach. They’ve left the decision up to us: do we go through with the procedure or not? I'm looking for advice on what the smartest move is here.

BTW, the tumor is huge, about 10 cm.

A nasogastric tube is necessary to relieve the stomach pressure, along with mandatory IV fluid replacement.

My mother passed away the day before yesterday. Her final days were incredibly difficult... death brought her relief, which I must focus on. But for us, there is only an emptiness and grief for all the future moments we won't be able to share with her...

Alexander Castillo5 said:My mom passed away the day before yesterday. Those final days were absolutely brutal... death brought her some peace, I have to remind myself of that. But for us, there's just this massive void and a heavy sense of grief knowing all the future milestones we won't get to share with her...

I am so sorry. Please accept my deepest condolences 😢

Let her rest in peace now, and try to look toward what's ahead. Life has a way of working itself out; no matter how crushing things feel, humans are built to endure.

vividsailor7 said:A nasogastric tube is needed to take the pressure off the stomach, along with mandatory IV fluids.

Thanks. My mom had surgery yesterday, and they moved her from the ICU to a regular room last night. I went to see her today, and when they briefly stopped her IV, she started vomiting blood. The doctor wasn't available while I was there, so I'm just wondering... is this kind of vomiting somewhat normal after surgery, or could it be related to the cancer?

I my mother is in a better place now, I hope... so, I am offering some Propecia and Gatorade if anyone can use them—both are chocolate flavored, about 10 units of each—plus some Megestrol that has just been opened, though I suppose I have no real use for it myself.

graniteseal50 said:Thanks. My mom had surgery yesterday, and they moved her from the ICU to a regular room last night. I went to see her today, and while they were briefly pausing her IV, she suddenly started vomiting blood. The doctor wasn't available during my visit, so I’m freaking out—is this kind of vomiting normal after a procedure, or could it be related to the cancer?

Vomiting after surgery happens sometimes; it's not entirely unheard of.
But you absolutely have to keep an eye on it. If it keeps happening, there's a real possibility of ileus.
Usually, doctors handle that first with conservative methods—things like a nasogastric tube and IV fluid and electrolyte replacement.

Burzynski has had a cancer treatment for ages hidden away in antineoplastons, but Big Pharma and the bureaucrats have strangled it. Why? Because they’d much rather push some high-margin, overpriced drug that sends people straight into bankruptcy—essentially debt slavery—before they even dream of offering a cure, let alone actually healing anyone after a mountain of struggle.

That’s the endgame for all of them: the banks, the pharmaceutical giants, and those massive corporations. Their goal is to trap as many people as possible in a cycle of debt. Once you're beholden to them, they hold all the cards; they’ll do whatever they want with you because they own you.

Jack Smith5 said:Burzynski has had a cancer cure for ages hidden within antineoplastons. Big Pharma and the bureaucrats have just stifled it to protect their bottom line. They’d rather push high-profit drugs that drive people into bankruptcy or debt slavery first, then maybe offer a cure after a massive struggle.

That's the endgame for everyone involved—the banks, the pharma giants, the mega-corporations. Trap as many people as possible in debt; once they own you, they control everything you ask for. That is where the power lies.

Gentlemen,

Please, before jumping into this discussion, read the Health guidelines PDF thoroughly. According to those rules, conspiracy theories and recommending drugs not approved by the FDA are strictly prohibited on this board.

We aren't interested in conspiracy theories here. We stick to what the experts say—modern evidence-based medicine.

And the experts state clearly that antineoplastons are experimental substances containing chemical compounds found in urine and blood. There is currently no published evidence in peer-reviewed literature supporting the efficacy of these substances. On the flip side, there is plenty of data regarding their toxicity.

The vast majority of papers concerning these preparations are published by Burzynski himself and his direct collaborators. Interestingly, independent researchers haven't been able to replicate the results seen in Burzynski's experiments.

Moderator Warning

Bottom line: there is no scientific proof of efficacy for these substances. Therefore, we cannot refer to them as a cancer cure, nor has the FDA approved them as such. Consequently, these substances will not be labeled as cures or promoted on this board.

Hello,

I realize this forum is intended for families dealing with malignant diseases, but I am looking for guidance on where to turn when a family member is struggling both physically and mentally.

To provide some context: a friend of mine has been navigating this since her mother suffered a stroke six years ago at age 40, while my friend was only 20. The stroke resulted in partial paralysis, impaired vision, and significant psychological instability.

Despite years of physical therapy and various wellness retreats to regain sensation, her mother remains unable to work. She spends most of her days in a dark room due to chronic headaches, has no social life, and is unable to care for her daughter or her own mother. Government assistance has been minimal, and it feels as though their circle of friends has drifted away.

In short, my friend has spent years managing her mother’s outbursts—everything from suicidal ideation and reckless driving despite poor vision to self-harm, deep depression, feelings of worthlessness, and paranoid accusations toward my friend, such as constant monitoring and unfounded claims about money.

It is an immense burden for someone so young, who is simply trying to study, work, and build a life for herself.

As a friend, I can offer a listening ear and comfort, but I lack the expertise to give practical advice or truly grasp the daily fear and guilt she carries.

I have suggested that she needs to speak with professionals who can offer actionable guidance. I also mentioned that finding ways to reintegrate her mother into society—perhaps through art therapy or adaptive swimming classes—might help her feel useful again and alleviate the pressure on her daughter.

Does anyone know of any therapeutic or social programs for people with these types of physical and mental challenges in Miami?

Additionally, regarding my friend, are there any support groups or organizations in Miami that host group meetings?

Thank you for any advice you can share.

We’ve officially reached the stage where my father is strictly on pain management. He spends almost his entire day bedridden at home. While he can manage the pain while lying down thanks to his pills, the moment he tries to sit up or take even a few steps, he feels this crushing pressure in his chest area that makes it impossible to last more than a couple of minutes. I am genuinely at a loss for what our next move should be. 😢 He goes out of his way to put on a brave face for us, though we all know how much effort that takes. His appetite is decent enough, but it’s obviously limited because he rarely leaves the bed. To make matters worse, the doctors have been an absolute disaster; they refuse to provide any concrete information or real clarity. He was even hospitalized for two days, yet they didn't bother running a single meaningful test—he was basically just receiving the same treatment we could easily administer ourselves at home. We feel completely helpless, much like most of you navigating this brutal fight. No matter how much mental strength we thought we had prepared, our reserves are draining fast because watching him suffer like this while being unable to actually help is devastating.

Sandra Ramos43 said:....

You should probably try posting this over on Psychosoft or Psychology. There are already a few threads floating around about open topics like this.
Good luck

Kate Brooks2 said:We’ve reached the point where Dad is strictly on pain management. He’s mostly bedridden at home. When he’s lying down, the pills keep the pain under control, but the second he tries to sit up or walk, he feels this crushing pressure in his chest area and can't last more than a few minutes. I honestly don't know what we're supposed to do 😢 He tries his best to put on a brave face for us, but we all know how much strength that takes. His appetite is fine, but it's limited because he barely moves. The doctors have been a total disaster—they won't give us any straight answers. He was even hospitalized for two days, yet they didn't run a single meaningful test; they just gave him stuff we could have easily administered at home. We feel completely helpless, just like most of you in this brutal fight. No matter how much we braced ourselves for this, our strength is fading because watching him like this without being able to fix anything is gut-wrenching.

You need to find out if that tumor mass causing the pressure can be surgically removed—even partially—or if there's a course of palliative radiation that could shrink it down. Demand clear, decisive answers to those specific questions from the medical team!
Is he on Medrol or Dexamethasone? Those are corticosteroids that should help reduce the edema caused by the tumor growth. You need to press the doctor about that too.

Angela Wright said:It’s absolutely vital to determine whether that tumor mass causing all this pressure can be surgically removed—even if it’s just partially—or if there is a course of palliative radiation available that could shrink the tumor down. You need to demand direct, decisive answers to these specific questions from his doctors!
Is my dad currently on Medrol or Dexamethasone? Those are corticosteroids that should help mitigate the edema caused by the tumor's growth. That is another crucial point to discuss with the medical team.

He is taking Dexamethasone, and he’s been on it for five days now. Thank you so much for asking these questions and for giving us the strength to keep going. <3

Kate Brooks2 said:He’s taking Dexamethasone for a five-day stretch. Thanks so much for answering our questions and giving us strength. <3

That’s likely being used as supportive therapy alongside chemo to help manage side effects. I was actually referring to a consistent, daily dose that would need to be prescribed by a doctor.

Angela Wright said:It’s likely being used as supportive therapy alongside chemo to help manage side effects. I was referring to a consistent daily dose that would have to be specifically prescribed by a physician.

He isn't undergoing chemotherapy or radiation anymore; he has transitioned entirely to palliative care. According to his doctor's specific instructions, he takes this medication as follows:
For the first five days: four doses of 4 tablets each
For the next five days: four doses of 2 tablets each
Then for another five days: two doses of 2 tablets each
After that period, he stops taking the medication altogether.
The issue is that he experiences significant pain immediately after taking this particular drug, and I am desperately trying to understand why that is happening.
Regarding his pain management, he initially tried Zaracet, which was completely useless, and after spending two days at the Mayo Clinic, he was switched to Naproxen and OxyContin drops, but even those haven't provided much relief. When we confront his doctor, he simply insists that the medication needs time to work, yet the pain persists and he can't sleep. He spends 98% of his time bedridden because the pain is just that unrelenting.

Kate Brooks2 said:He isn't doing chemo or radiation anymore; he’s strictly on palliative care now. He follows his doctor's specific prescription for this medication like this:
First five days: 4x4 tablets
Next five days: 4x2
Then another five days: 2x2
After that, he stops taking it entirely.
He gets these intense pains after taking this drug, so I'm trying to figure out what's causing it.
Regarding pain management, he first tried Zaracet, which didn't help at all. After spending two days at the Mayo Clinic, they put him on Naproxen and OxyContin drops, but even those aren't providing much relief. When we talk to the doctor, he just insists that the meds have to work, but the pain persists and he can't sleep. He spends 98% of his time just lying there because of the pain.

I have to admit, I've never heard of a Dexamethasone regimen being administered this way, nor why he was on it for such a short window. He really should be using Fentanyl Patches, potentially combined with something else as needed. Since the doctor seems completely unwilling to cooperate, you need to go to the ER and demand to see an anesthesiologist. They are the ones who can actually balance and titrate his pain medication doses and explain how to increase them when the pain spikes.

It’s been about nine months since my first post, and I’ve finally found the strength to write an update on my father's harrowing medical journey. Forgive me if this feels repetitive; I just need to get the sequence of our struggle out in the open. Here is how it unfolded: Over the last two years, he’s been managing CLL/SLL with chemo and about eight months of Rituxan. By September 2011, he was in full remission—regular hematology checkups, everything looked perfect—until January 2012, when the forgetfulness, confusion, and non-febrile tremors started. His hematologist sent him to neurology. Everything seemed normal until a brain MRI in March showed lesions, suspected to be leukemia infiltration. He was put on Tegretol due to suspected epilepsy because the lesions were in the temporal lobe. After consulting with a neurosurgeon, the hematologists opted for a stereotactic brain biopsy, but the results came back inconclusive. The neurosurgeon suggested waiting a month for a second biopsy since a follow-up MRI showed the lesions had grown slightly, even though he was on Dexamethasone at the time, which they assumed would shrink any leukemia infiltration. A second biopsy was performed in May, and according to an unofficial phone call between the neurologist and the pathologist,
glioblastoma (which is why I first came to this forum). However, the official pathology report arrived two days later stating there were only demyelinating lesions with no sign of tumor cells. We were euphoric; we thought we had dodged a bullet. The neurological workup dragged on until June, resulting in a working diagnosis of ADEM—which is essentially just medical guesswork. In September, the doctor recommended repeating the MRI. As someone with a medical background, I tried to suppress my worst instincts and stay objective, fearing my daughterly bias might make me see shadows where there were none. At that point, Dad didn't have many symptoms beyond the intensifying memory loss.
In September 2012, the MRI was a disaster: the lesions had expanded, there was edema, and the optic nerve had thickened. After a third biopsy , the official diagnosis was Glioblastoma Multiforme, Grade IV. By the way, it's inoperable.

Dad is currently mobile, but his memory is a wreck; he swaps words at random, like calling a spoon a "sticker." His personality has shifted entirely, characterized by sudden anger, stubbornness, and an abnormal appetite. Does anyone have experience with appetite changes linked to this specific diagnosis that aren't caused by medication?

I am drowning in questions. How could a case this specific evade a definitive diagnosis for nine months despite seeing top-tier specialists? It leaves me wondering if there were medical errors worth pursuing legally, though I know my grief is likely just searching for a scapegoat. There are moments I don't even believe the final diagnosis; if they spent nine months guessing blindly, how can we trust this truth?

Sorry for the long vent, but I needed somewhere to offload this nightmare.

Angela Wright said:I have to be honest, I haven't really heard of giving Dexamethasone like that before, or why he was on such a short course. I think Dad should probably be using Fentanyl Patches instead, maybe combined with something else if needed. Since the doctor clearly isn't being very helpful, you should just head to the ER and ask for an anesthesiologist. They can figure out how to titrate his pain meds and explain how you can adjust the dose when he needs it most.

If @Kate Brooks2/">@@Kate Brooks2 is in New York City, I’d suggest seeing Dr. John Doe, he's at the Mayo Clinic..

So, what kind of life lesson is this supposed to be? 😢

That initial diagnosis had absolutely nothing to do with glioblastoma. We’re looking at a completely different primary tumor here, one with an entirely different cellular structure. The doctors here followed the playbook to a T; the only real failure was that the pathologists couldn't accurately interpret the pathology report, which is the gold standard for setting a diagnosis and deciding on the right treatment. If I had one gripe with the medical team, it’s that they overlooked the radiology results—which didn't match the pathology at all—and actually suggested sending him to a center of excellence to get a second opinion.
But look, regardless of whether they caught it sooner, this specific diagnosis doesn't change the reality of the disease's progression or the eventual outcome. 😢 I am truly sorry. My advice is to pour every ounce of your energy into his care and improving his quality of life as much as humanly possible.
Regarding his appetite, that's directly tied to the steroid therapy he's getting to manage the edema. Keep a close eye on his blood sugar, because it’s very likely to spike as a side effect of those steroids.
Hang in there and don't try to look further ahead than tomorrow. That is honestly the best advice I can give you.

Hey everyone..
Haven't posted in a while because things were actually holding steady for once..But tomorrow marks exactly eight years since my husband was first diagnosed with lung cancer..Eight years today..
Back when this all started eight years ago, I was driving him to the hospital on New Year's Eve..And now, here we go again—tomorrow is New Year's Eve, and I’ll be driving him home from the hospital..
He's at Oakwood this time..About two months ago, they had to put in two stents because his arteries were basically blocked (99.9%!), but then everything just went south about a month later. He ended up having surgery ten days ago to get three bypasses done..And that's where the nightmare starts. They had to crack his chest open, which is a total disaster because he can't stop coughing. It's constant, honestly worse than before..I'm thinking maybe they irritated his airways during intubation or something. He's in absolute agony. My biggest fear right now is that the cancer, which has been lying dormant this whole time, decides to go rogue because of the trauma from the surgery, the chest opening, and the intubation..They’re discharging him tomorrow, ten days after the operation..I'm scared.