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

Anyone else dealing with pancreatic cancer? 😢

Not great.

Sandra Rodriguez77 said:A family member is dealing with a cancer recurrence that has spread to the lungs—it started as colorectal cancer. They’ve already had surgery to remove a lung metastasis and a lymph node, but there's still one left in the abdomen that they plan to tackle with chemotherapy.

Since this is an older person who is struggling immensely with the psychological toll of all this, and the doctors are being incredibly vague with their explanations, I’m reaching out here to see if anyone can help.

The thing is, she claims this chemotherapy is going to be different from the standard stuff; apparently, she has to stay in the hospital for 48 hours for every single infusion.
The doctor told her this and then immediately headed off to the coast because they're still waiting on approval from the relevant institutions, leaving her totally anxious because she has no idea what kind of treatment this actually entails.

Does anyone know what this might be?

It sounds most likely like the FOLFOX protocol. From what I understand, that's a second-line treatment option for colorectal cancers.
https://en.m.wikipedia.org/wiki/FOLFOX
Everything regarding what happens during those two days should be explained right there.

Dana Martin87 said:What are your experiences dealing with pancreatic cancer? 😢

If you catch it early by sheer luck, there's a real shot at successful treatment. But let's be honest—most of the time, it’s discovered way too late because this disease doesn't even start acting up until it's already gained significant ground.
We’re dealing with a treacherous disease here—one that plays dirty and offers pretty grim outlooks once you hit the stage where metastases have already set in.

Angela Wright said:If you catch it early by pure luck, you might have a shot at treatment. But usually, it’s found way too late because this thing stays hidden until it's already running wild.
It's a sneaky disease with terrible outlooks once they diagnose it and find metastases.

I'm talking about my father here. I haven't been able to corner his main doctor yet to get the real story, and the nurse on the floor wouldn't—or couldn't—tell me much, other than that chemotherapy is on the table, and now they're mentioning surgery... My sister mentioned the doctor suspects stomach cancer, but she isn't allowed to officially share any info.
Whatever it is, he really let this one slip away. He's been feeling off for months—fever after fever, occasional stomach pains, and he lost a massive amount of weight. But he kept brushing it off to the doctor, claiming it was just stress killing his immune system. He finally ended up in the hospital when the paramedics had to pick him up because the pain and chills were so bad he couldn't even move. He described the pain like someone stabbing a knife into his spleen.
Right now, he's in the hospital on antibiotics and heavy painkillers, and the fever hasn't broken... I'm hoping to catch his doctor tomorrow and finally get some straight answers.

Look, if it is stomach cancer, there isn't much hope for a cure. What I really need to know is: what's the shortest window of suffering for these patients? I've read this is one of the most painful cancers out there, and I don't want him living through years of agony. If there's no way to manage the pain—and I've read that even morphine doesn't always cut it—then I just want it to be over quickly...

It’s impossible to give anyone an exact timeline for how long they’ll live; there are just way too many variables at play.
Look, just hold on a second and actually see what we're dealing with here first. It doesn't necessarily mean the whole thing is a total disaster.
As for the pain itself, it can be managed quite effectively—that’s literally what anesthesiologists are trained to do. I happen to know a neighbor who was dealing with a massive tumor and didn't experience any pain at all.

My father-in-law is still in the hospital. The coughing up blood seems to have stopped for now; apparently, his doctor mentioned a ruptured vessel in his lungs was the culprit, compounded by some dehydration.
He’s currently on an IV and has already received two units of blood, though my mother-in-law says he's having a hard time breathing. It might be due to fluid in the lungs. Is there any way they can perform a pleural tap to drain it? My mother-in-law hasn't brought it up with the doctors because she's terrified of hearing bad news, and since we're out in a different part of the state from where he's staying, it isn't exactly easy for us to drop by.

It’s doable, but the real headache is that once you perform the puncture, the fluid tends to build back up incredibly fast. That’s why we view it as a last-resort palliative measure; the goal is always to manage the situation with something like Furosemide or Lasix first if at all possible.

It has been quite some time since I last visited this Forum, but eight and a half years ago, this community provided me with a much-needed sanctuary and the fortitude required to face my mother's illness. I have such profound respect for Angela Wright for remaining here, still ever-ready to offer support and dispel the dark, overwhelming anxieties felt by all of us who wander into this space searching for any way to aid our loved ones...

Eight and a half years ago, my mother was diagnosed with stage IIIc ovarian cancer. Facing that diagnosis was incredibly difficult, as was the struggle to find effective ways to help her through it. To be brief, I can no longer recall the specific usernames of everyone who offered us hope during those harrowing times. What I can observe is that, unfortunately, most of those fighters lost their battles, which makes me acutely aware of how grateful I am that Mom has endured everything she has: two major surgeries, approximately 80 rounds of chemotherapy to date, anaphylactic shock, kidney atrophy, and more... Today, she is living with a recurrence in a lymph node that is either inoperable or simply too risky to touch. I don't know every single detail regarding her treatment—not because I lack the desire to know, but because she insists on "sparing" me from the specifics. What I am currently aware of is that she has been prescribed Vinorelbine; while it isn't prohibitively expensive, the hospital claims they cannot source it at the moment due to supply issues. Does anyone here happen to have experience with this particular medication? Thank you.🙂

Hey Benjamin Grant6—is Vinorelbine the only thing they've got for Mom, or is there more to her chemotherapy cocktail?

Benjamin Grant6, regarding the Vinorelbine sold under the brand name NAVELBINE by the pharmaceutical company Pierre Fabre: if I were in her shoes, I’d reach out to them directly. I’d lay out the whole situation and ask them straight up what the holdup is with the US. It’s likely there’s a specific distributor handling their products here in the States, and that’s where the bottleneck is happening, but that doesn't mean the hospital is stuck. They can still arrange an emergency import from overseas. Since the medication has been officially prescribed, they have a responsibility to make sure she gets it.http://www.pierre-fabre.com/en

Michelle Cook83 said:Has Mom been prescribed Vinorelbine as a standalone treatment, or is it part of a broader chemotherapy cocktail?

As of right now, it’s being used as her sole medication. Given how complex and exhausting her battle has become, it feels as though she has hit a wall, and the oncologist seems hesitant to suggest any other alternatives... She did respond to Taxol and Carboplatin, and she was previously on Gemzar, but that actually made things worse, which is why the recommendation shifted toward Vinorelbine. She completed one round of therapy, and according to my memory, she was scheduled for a second dose after seven days and a third after fourteen, followed by a planned break. However, thanks to the quirks of our healthcare system, she finished just one session and has now been left without treatment for fourteen days... 😲 essentially facing an unplanned hiatus.

I am holding onto the hope that the oncologist decides on a "swift substitution" tomorrow. What remains baffling is that while the drug itself isn't prohibitively expensive—it's manufactured in France and distributed by Pliva—the hospital in Pula simply doesn't have it in stock. We are prepared to purchase it privately, but that isn't a viable solution since the hospital won't administer a medication that hasn't been supplied through their internal channels.

I was mostly curious if anyone else here has experience with this specific treatment, either past or present...

Look, whatever you do, do not settle for some "quick swap" solution, especially when there is already a specific prescription on file,
because it’s never actually a matter of the medication being unavailable—it’s a matter of them refusing to provide it! It isn't that they can't get their hands on the drug; they just won't! Under the law, they are strictly obligated to ensure she receives her medication if she is currently in therapy and the hospital board has already signed off on it. They need to step up and handle an emergency import if they have to; they are legally required to do so!
Stand your ground and remind them that they are bound by both federal law and official regulations!

I’m totally with you on this—there should be absolutely no such thing as "alternative" chemotherapy. We really need to push the authorities to get this approved immediately, especially since we're talking about a drug that's used as the sole option in chemo.

I’d personally reach out to Pliva to see what’s really going on.
My take? The hospital probably blew past their budget cap, and now they're playing dumb, hiding behind some vague, pragmatic excuse to cover their tracks.

Angela Wright said:Whatever you do, don't settle for some "quick substitution," particularly when there is already a definitive answer available,
simply because they claim they can't source the specific medication for some reason! It isn't that they can't; it's that they simply won't. They are legally bound to ensure she receives her treatment if she is currently on it and the hospital board has already approved it. They should just perform an emergency import—they are required to!
Stand your ground and remind them that they are obligated by both law and regulation!

My thanks to Angela Wright for the advice. My father discovered that there is a permanent suspension on the importation of Vinorelbine, so we are currently awaiting a response from Pliva, who acts as the distributor. Regarding my mother, the situation is somewhat more convoluted because she is considered an "outside" patient, given that her struggle began at Avian, which means the oncologist cannot simply assume whether the drug is in stock or not. You have to understand that, much like anyone else, I am starting to panic, and I would very much like to have an answer this instant...

We will certainly be asserting all of our rights, just as we have done up until now. Given the nature of the recurrence and the complications that have arisen, chemotherapy will undoubtedly be administered in the near future. It was quite a shock to find the medication unavailable, and fortunately, this is the first—and hopefully the only—time we will ever face such a predicament...

Hello... My father has lung cancer. He finished his chemotherapy, and the tumor has actually shrunk. But ever since he found out, it’s like he’s completely lost his nerve. He refuses to eat anything, complains of constant headaches and stomach pains, and won't even take his pills. He went to the ER today for some tests, but everything came back clear, so they wouldn't admit him. Does anyone have any advice on how to handle this? If this keeps up, my mother is going to have a total breakdown. He's scheduled to go in for radiation this Friday, and until now, staying in the hospital was never an issue for him. Thanks!

Michelle Cook83 said:I also completely agree that there should be no substitute for chemotherapy here. We need to insist that the institution acquires it as soon as possible, especially when we are talking about a drug used as the sole component in chemo...

While I am not intimately acquainted with the specific reasons behind the shortage, I have been informed that the hospital staff is doing everything within their power. We all understand that this fight requires finding new strength day after day, so giving up simply isn't an option...

From what I've managed to find, only one person has actually filed a formal inquiry regarding the medication so far. I have only just had the chance to read through the side effects and the application protocols...

People might say I’m not thinking straight, but our experience over the last eight and a half years has taught us that none of us ever truly knows the full story; we only know our own small piece of it. If I actually knew everything that was happening, I would likely just be an even greater panicker and more terrified than I already am... I will certainly keep everyone posted on how things develop, in the hope that it might help someone else...

And one more question: low hemoglobin—what can be used to raise it? We have already tried every single suggestion offered on this thread, so I was wondering if anyone has any additional advice regarding hemoglobin levels...

Ethan Cook27 said:Hello... my father has lung cancer, and after completing chemotherapy, the tumor has actually shrunk. But ever since he received the diagnosis, it’s as if his spirit has simply vanished; he refuses to eat, complains of constant headaches and stomach pains, and won't even take his medication. He was at the emergency room today for tests, but everything came back normal, so there wasn't any medical reason to admit him. Does anyone have any advice on what we might do? My mother is going to have a complete nervous breakdown if this continues. He is scheduled for radiation this Friday, and until now, staying in the hospital has never been an issue for him. Thank you!

I don't have any profound wisdom to offer, other than sharing what finally moved my own mother to action. Being an oncology patient fundamentally alters a person, and watching from the sidelines is an exhausting ordeal for us as well. My mother was hit with the realization that she was only halfway through her life, and she wanted to give up right at the starting line. It sounds cliché, but we just had to find a way to make her realize she needs to fight. If I were to write down everything we have endured or are currently enduring, people might call us harsh or perhaps even irresponsible, but the most vital thing is that we stay by her side, biting our tongues whenever we feel our own patience fraying...

So, please, think about your father and identify what truly motivates him. Psychology plays such a massive role in this battle. We are all different individuals, yet we are all similarly vulnerable. Do you think my mother would have pushed through all eighty rounds of chemo? No, but we managed to establish a ritual...

Thank you... He actually handled the chemotherapy reasonably well, going wherever he needed to go and showing real compassion during the process. But now that it's over, it’s as if someone flipped a switch in his brain. Communication is impossible; he won't talk about anything, just curses constantly, and even says he'd be better off dead. I wouldn't say a word if the chemo hadn't helped and things weren't objectively better, but this is different. The worst part is that Mom is handling him all by herself, and she's already at her breaking point.