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

Respectful greetings. My brother is battling bladder cancer, which has unfortunately metastasized to nearby organs, his bones, and his lymph nodes. He underwent palliative radiation therapy about a month ago and has also received chemotherapy (Gemzar)
While the radiation initially helped manage the pain, unfortunately, the intensity has started to increase again over the last few days 😢 I am inquiring about the next steps for pain management. Is repeating radiation therapy an option? I am fully aware of the stage of his illness and the prognosis... my only wish is to minimize my brother's suffering. Please, if you have any advice...

When it comes to radiation exposure, everything hinges on the specific dosage received, and honestly, you're going to need an oncologist to give you a straight answer on that.
As for managing pain, you really need to get in touch with an anesthesiologist at a specialized pain management center; they're the ones who can tailor a custom cocktail of medications and fine-tune the dosages specifically for you.

He had 15 sessions of 30 GY power radiation hitting the abdomen, pelvis, and bladder...

electricotter92 said:There were 15 sessions at 30 Gy targeting the abdomen, pelvis, bladder...

I’m honestly not sure about the maximum dosage limits. I think I recall seeing somewhere that 70 Gy is the ceiling, but whether the specific body part being treated changes that threshold is something I don't know. If there is any actual benefit to more radiation, I’m certain an oncologist would prescribe it if it made sense. You really need to have a direct conversation about this—either with the primary oncologist or the doctor currently handling palliative care.

Here is my conclusion regarding the decision to proceed with radiation and chemotherapy using HT Gemzar CDDP.
metastasis in the upper ramus of the ilium...

cosmiclynx14 said:Vomiting blood can be a symptom of stomach cancer... though, I suppose it could stem from another organ entirely, for all I know.
As I understand it, an MRI can pick up on bone issues while a CT scan might miss them; they actually told us we have to specifically request head scans when he goes in for the MRI.

I’m really hoping things start looking up for your dad, that his strength returns quickly, and that he can begin treatment soon.

Thanks, cosmiclynx14. They haven't pinpointed the primary tumor yet, and he’s still staying at the hospital. He’s actually eating quite well and has a wonderful appetite, which is a relief. Yesterday, the doctors told him he couldn't eat anything after lunch because he has to go back for another ultrasound today. It’s been two weeks since he was admitted. He remains incredibly alert and upbeat, calling us constantly to check in; he’s curious about everything, and I even brought him some headphones so he could listen to the radio. He’s even trying to play "roommate" and help out the other patients if they need anything. He has lost some weight, though that’s hardly surprising given everything he’s been through. We are just waiting now.

feralsurfer72 said:Thanks, cosmiclynx14! They still haven't pinpointed the primary tumor location, so he's still stuck at the hospital. Honestly, he's eating everything in sight—appetite is great. Yesterday they told him nothing after lunch because he has to go back for another ultrasound today. It’s been two weeks since he was admitted. He’s alert, in good spirits, keeps calling us, asking a million questions... I even brought him some headphones so he can listen to the radio. He’s even trying to help out his "roommates" if they need anything. He’s lost some weight, but honestly, given what he's been through, it’s no surprise. We're just waiting.

My dad was exactly the same way when he was in the hospital, the life of the party 😁 and yeah, this waiting game? It’s the absolute worst. 🙂

We were over at the oncology clinic today. On Wednesday, he meets with the team to go over the new results and decide if they’ll start him on just Xeloda pills or jump straight to something more aggressive. I think she mentioned some kind of triple IV therapy, but who knows, I have no clue. Everything hinges on the scans and how he's holding up physically, which the doctor said is actually looking way better than during that first consultation. Basically, the doctor said there's zero time to waste and he starts treatment this Friday.

In the middle of all this misery, I was actually blown away by how kind and human the approach was. The doctor was incredibly professional but also decisive, and the rest of the staff at the clinic were great too. They handle the patients and the logistics in such a decent, human way without all that fake "pink ribbon" fluff or giving people false hope. It really means a lot...

We spent the day at the hospital again—it feels like our second home lately—and they’ve scheduled his MRI for April 22nd. The doctors mentioned he’ll likely head straight home once that's finished. We're also expecting the oncologist to stop by this Wednesday. It seems they are ruling out stomach cancer yet again; even though that was suggested on the initial CT scan before his duodenal ulcer flared up, the doctor insists the stomach issue has been resolved. When I pressed her on where the primary tumor actually is, she suggested it’s most likely the pancreas after all. My father mentioned they might run another CT tomorrow, too. Honestly, this endless cycle of testing and shifting theories is driving me absolutely mad.

Here’s this link to an interesting piece from Time Magazine featuring an interview with Drs. Đikić, Pleština, and Vrdoljak regarding six new cancer treatment methods. I wanted to highlight this specific excerpt from Dr. Đikić since we were just debating this very topic here the other day:

We are never going to "solve" cancer, says Prof. Đikić, because these cells are an intrinsic part of our own biology. Tumor cells are simply our own cells that have mutated and begun acting without restraint. The number of cancer cases continues to climb, which isn't just due to people living longer, but also because of environmental factors, various types of stress, and much more advanced detection methods. We diagnose cancer far better today than we used to; in the past, people were still dying, we just didn't know what was killing them.

“In a healthy human body, over a hundred—sometimes even a thousand—tumor cells appear every single day. Our immune system wipes them out so efficiently that we never even realize these transformed cells were ever created or destroyed. Cancer as a clinical disease only manifests at the moment those cells become resistant to our body's natural defenses and begin multiplying in one spot, forming a primary tumor mass,” Prof. Đikić explains.

My father underwent an abdominal ultrasound on February 19th, followed by a gastroscopy and colonoscopy on March 5th, and then an abdominal CT scan on March 18th.
Then, on March 26th, he ended up being hospitalized because a duodenal ulcer perforated, which led to an X-ray and yet another gastroscopy.
Most recently, he had an abdominal CT on August 5th, and we have an MRI scheduled for April 22nd. I honestly can’t wrap my head around why he’s needed for two gastroscopies and two CT scans in such a tight window; what else does he have to endure before they finally provide a definitive diagnosis?

feralsurfer72 said:My dad had an abdominal ultrasound on Feb 19th, then a gastroscopy and colonoscopy on March 5th, followed by an abdominal CT on March 18th.
Then on March 26th, he ended up hospitalized because a duodenal ulcer perforated, which led to X-rays and another gastroscopy.
After that, he had another abdominal CT on August 5th, and an MRI is scheduled for April 22nd. I just don't get why he needs two gastroscopies and two CT scans in such a short window. What else does he have to go through before they actually figure out what's going on?

We went through something almost identical with my dad—it started totally by accident when an ultrasound caught liver metastases. Then came the colonoscopy (which showed nothing), then his duodenal ulcers burst, landing him in the hospital where they did a gastroscopy (all clear again), then an abdominal CT, then a chest CT, and finally bone X-rays. In the end, the verdict was liver and bone metastases, terminal stage, and they couldn't even find the primary tumor.

They suspected the pancreas (his Ca 19.9 marker was 49, while the limit is 37) or maybe the lungs (CYFRA marker was 8 against a limit of 3), but the CT scan didn't show a thing.

He was sent home without any treatment plan—they basically told us there was nothing they could do and our only option was to keep cranking up the dosage on his pain patches.

So, we took him to a major medical center in Chicago to get a second opinion. They reviewed all the files, performed a liver biopsy, and the results showed a microcellular tumor. Microcellular lung cancer is one of the most aggressive forms, and in my dad's case, it was occult—meaning the primary site just wasn't visible.
Dad went through nine cycles of chemo. He just had another CT this past Monday, and right now, we're stuck waiting on the results.

It’s frustrating because they were just guessing with him too—first thinking it was the intestines, then the stomach, then the pancreas, then the kidneys, until the biopsy finally pointed to the lungs.

This whole ordeal kicked off in mid-May last year. For two months, Dad couldn't move because of the pain; he literally had to relearn how to walk. He dropped 30 pounds, but now he's gained 15 back, eats everything in sight, works in the garden, and runs around playing soccer with his brother like he isn't even sick.

I don't know what your dad's markers look like, but honestly, you should ask the doctors why they aren't doing a liver biopsy if they can't locate the primary tumor.
It could be the pancreas, it could be specifically microcellular (which loves to metastasize to the pancreas), or it could be something else entirely.

They need to nail down a diagnosis ASAP. You can't even start any kind of real therapy without a biopsy—doctors can't just play guessing games with meds if they don't know the specific tumor type.

I'm really pulling for you guys to get a diagnosis quickly so you can start treatment. Don't let them waste any more precious time.

I’m based out of San Diego, and back in early February, my dad got hit with a diagnosis for a malignant tumor on the front of his epiglottis—basically throat/vocal cord cancer that’s already spread to his tongue, and honestly, I might be forgetting a few other nearby organs too. The surgeon at the Mayo Clinic who performed the procedure to create the opening in his throat for the cannula was incredibly blunt with us. He didn't sugarcoat anything; he told us we were way too late, that removing the tumor would basically mean removing half his head, and that even in a best-case scenario, he’s looking at maybe three or four years left. He even suggested we start looking into hospice facilities right now. In a weird way, we’re actually grateful for how straight up the doctor was. It’s better to take the full shock all at once rather than being fed little pieces of bad news over time. We aren't even entertaining the idea of hospice yet, obviously, but we definitely get how heavy this is. We know what cancer means because my grandpa went through it too. Dad’s been dealing with depression for years, so this whole mess is just digging that hole even deeper. He won't touch any kind of psychological help, and honestly, I really hope—and think—that he hasn't fully processed the fact that he actually has cancer, even though the doctors were super direct with him. He’s always struggled with self-confidence and gets pretty forgetful, which I'm guessing is a byproduct of those epileptic seizures he's had caused by alcohol... though he’s never actually gone to a doctor for that. You can only get him into an office if you practically drag him there. Most of the time, it’s like he just forgets or blocks out anything that isn't convenient or helpful for him. I'm actually thankful for that right now, even if it's a double-edged sword since he refuses to quit smoking or drinking beer. He only eats when he's starving, and he won't drink enough fluids, so I have to be super tactical and basically trick him into eating healthy food. It is seriously tough trying to cooperate with someone who refuses to cooperate with you. Even though the doctors laid it all out for him, he seems to have tucked all that info into some little pocket in his brain and completely ignored the gravity of the situation. Right now, he isn't even stressed about the cancer itself; he's just miserable about the constant trips to the clinic and the radiation treatments we just started a few days ago. Some days are okay—he takes his meds and eats well—then we'll have five bad days, then four good ones. We're just taking it one day at a time... doing our best not to spiral and trying our hardest to beat this shitty cancer! (...sorry for the language!)🙂).
Anyway... the main reason I’m posting is that I really wanted to give a huge shoutout to my sister Nevenka and Dr. Romic from the mobile palliative care team. If I remember correctly, they’re pretty much the only crew doing this kind of work around the San Diego area. They’ve reached out to check on my dad every once in a while, even though we’ve only actually called them a few times for advice or help with his Tramadol shots. Honestly, they show way more heart and actual empathy than that cold, unreachable oncologist we've been dealing with. The other reason I'm popping in is to offer a little bit of support if anyone else here is caring for someone with the same type of tumor. Please feel free to reach out—I won't be glued to my computer since life is pretty hectic right now, but I’ll do my best to check my messages whenever I can. I know how incredibly tough this is for all of us, especially for those who are actually sick. Just a heads-up, I’m definitely not a medical pro or anything, but I'm more than happy to share whatever personal and family experiences I have to help us get through this.
Alright, so here's the deal... just a few basics to get us started.
Quick tip if you're heading in for an X-ray: make sure you grab a plastic cannula. Don't let them talk you into just getting one single tube—you're actually entitled to four, not just one per year. When we first started out, they tried telling us we only got one plastic one and two silicone ones annually. Just a heads-up though, if you go the silicone route, definitely double-check with the technician doing the imaging to see if that material even plays nice with the X-rays. We were thinking about just picking up another plastic one ourselves, but man, those things aren't exactly cheap. $1000 No recipe yet. We haven't even checked in with the technicians about the silicone.
If you're looking to kickstart your appetite, just have your GP write you a script for Megostat.
If you're looking to help him put on some weight, maybe ask his primary care doctor to prescribe Supportan too. It’s this fiber-packed shake that hits around 300 calories—honestly, on some days, it's pretty much the only thing Dad actually manages to get down.
...I mean, I’m pretty sure those two meds have their own set of side effects too, but they’ve been a huge help for us.
With the Megostat, it’s kind of hit or miss—sometimes it works wonders, and other times, even with it, there's just zero appetite.
As for pain management advice... honestly, your best bet is to head over to the Pain Management Clinic at the local hospital; they'll figure out the absolute best therapy for you. Usually, those clinics run during morning hours... at least at the Mayo Clinic.
Right now, we're using Tramadol (100mg) mixed with OxyContin (10mg) to handle the pain. We deal with some side effects like constipation or diarrhea every now and then... but lately, we've been struggling with really frequent, difficult, and super painful urination (it can sometimes take up to 15 minutes!). I'm thinking it's probably from the Tramadol and OxyContin, especially since the radiation isn't helping much, even though they're treating the throat rather than something like the bladder nearby.
Ugh... anyway, that's the update for now.
Wishing you all health, joy, and plenty of optimism... for yourselves and everyone close to you... big and small! And stay brave and strong... because you really are, even when it feels like you aren't! I'm rooting for all of us!

Chris Ruiz2 said:...

Try fighting for Erbitux.
About five years ago, back when they were first registering Erbitux in the States and negotiating its inclusion on the Medicare coverage list for colorectal cancers, I spoke with a Merck representative here in the US. She told me straight up that Erbitux showed incredible results for head and neck tumors—and if we were talking about a breast cancer drug with those kinds of numbers, Medicare would have greenlit it instantly. But because head and neck cancers are relatively rare and often hit a demographic that doesn't carry much political or social weight, there’s just zero interest in fast-tracking it. Basically, the drug is FDA-approved and indicated for use, but the catch is that it isn't on the hospital's approved formulary for this specific indication. If an oncologist recommends it and tries to push it through a hospital board, the facility would essentially have to foot the bill out of their own budget. Given how the bureaucracy works at a place like a major metropolitan hospital in Chicago, getting that request seen by a board is a massive uphill battle. On the flip side, if your doctor writes you a private prescription, you could technically try to seek reimbursement from the hospital, but people don't do that. It's a total gray area. My advice? Sit down with your doctor and have a blunt, honest conversation about that option, and absolutely make sure you get a second opinion. You don't need to fly across the ocean for that; just find a private specialist who isn't tied up in the red tape of the public system.
Furthermore, you should definitely look into joining one of these open clinical trials. Since we're part of the global medical community, it's much easier to get into one, especially since they're dealing with rare tumors where researchers are constantly desperate to meet their patient quotas to keep the studies moving. Check out the European clinical trial maps online; they show exactly which countries have active studies running. For instance, I believe there are about 15 active trials running in Italy right now. If you manage to get enrolled in a study, your dad could potentially get the medication for free for as long as it's effective and needed, even after the study officially concludes. There wouldn't be any costs involved, aside from maybe travel expenses for check-ups. And if you can coordinate with his primary oncologist, it might even be possible to perform some of the routine monitoring locally and just send the data over to the study coordinators.

I really hope it's not too late to take action.

My advice to everyone is this: never, ever give up, especially when someone tells you it's over! It might be "over" according to our healthcare system, our funding limits, or our current medical knowledge, but there is always something else—even if it's just palliative care meant to extend quality of life. That's why the old saying "Google is your friend" actually holds serious weight when you're navigating cancer treatment.

Hey Angela Wright... thanks a ton for the heads up. We're gonna do everything we can on our end. 🙂

So, I caught something on the radio the other day about new meds being added to the Medicare formulary, so I did a little digging online and stumbled onto this...

"We've added 14 new drugs to the Medicare basic coverage list, along with 77 generic versions of existing medications," said Varga.

The lineup includes stuff for kids fighting acute lymphoblastic leukemia (clofarabine), treatments for sarcoma (trabectedin), melanoma (vemurafenib), kidney cancer (pazopanib and everolimus), lung cancer (gefitinib), plus options for lymphoma and multiple myeloma patients (plerixafor), diabetes (lyxisenatide), high cholesterol (fenofibrate + simvastatin), and fungal infections (micafungin).

They also threw in meds for HIV (maraviroc), neutropenia in cancer patients (pegfilgrastim), muscle spasms from MS or spinal cord injuries (tizanidine), and macular degeneration (aflibercept).

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Hey everyone... how’s it going? How are your loved ones holding up?

Angela Wright I was digging through this old thread and read everything you wrote about your mom. I had absolutely no idea—I am so incredibly sorry. Honestly, I don't think I've ever encountered such a group of brave people in one single place...

Does anyone here actually know what mucinous adenocarcinoma means? Specifically, I have a few questions where Google just keeps giving me contradictory answers...

Is this the type of cancer that grows aggressively? Does it tend to metastasize quickly, or is it a slower process? And based on the statistics, how does it typically respond to treatment?

One more thing—why is it that patients at MD Anderson aren't being offered radiofrequency ablation if they supposedly perform it and even list it as a service?!

My father was discharged from the hospital this past Thursday.
Diagnosis:
K921 Melena
K920 Hematemesis
C250 Malignant neoplasm of pancreas
C787 Secondary malignant neoplasm of liver
C780 Secondary malignant neoplasm of lung
K295 Chronic gastritis, unspecified
D500 Anemia due to iron deficiency, following blood loss (chronic)
K317 Gastric and duodenal polyps

Summary: A 66-year-old patient was hospitalized due to melena; the medical history noted instances of hematemesis at home. Following epigastric pain and weight loss, an outpatient surgical workup was initiated. Abdominal ultrasound revealed multiple secondary lesions in the liver, measuring up to 10 cm, alongside a possible primary liver tumor. Changes were also noted in the pancreatic region, which could suggest enlarged lymph nodes or a primary tumor process. A colonoscopy performed three weeks prior showed no tumors, only signs of colitis. An outpatient abdominal CT scan showed diffuse secondary lesions in the liver, including an 8.5 cm conglomerate mass. There is suspicion of a duodenal tumor, though a continuous extension of a pancreatic tumor cannot be ruled out. Peritoneal dissemination is present. Upon admission, the patient was eupneic, afebrile, and normotensive. Digital rectal exam confirmed melena, and labs showed anemia, elevated inflammatory markers, as well as elevated GGT and ALP. Tumor markers CEA, CA 19-9, NSE, and CYFRA 21-1 were all elevated.
A follow-up gastroscopy was performed: chronic gastritis with regional angular infiltration and a gastric cardial polyp. Pathology confirmed chronic gastritis and a hyperplastic gastric polyp. No malignant cells were found. The anemia was corrected with three doses of concentrated iron via IV along with a PPI; symptomatic abdominal pain gradually subsided, and the last stool sample was negative for hemoccult. A dermatologist examined some papular skin lesions on his back and recommended treatment. A follow-up chest CT was conducted: aside from a tiny subcentimeter nodular lesion near the caudal part of the hilus in the lower lobe—likely a secondary lesion—the rest of the findings were unremarkable. The patient was seen by an oncologist who does not recommend active oncological therapy, suggesting only symptomatic management instead.

Discharge medications include: Controloc 40 mg, Ramzid, Spamex as needed, Reglan as needed, Tramundin, Transtec 35 mcg, Megostat 10 ml, and Prosure (2x1 pack). An MRI of the pancreas is scheduled for April 22nd.

The oncologist didn't even actually examine him; he just looked over the paperwork. They suggested we seek a second opinion, so I intend to do exactly that. I’m looking for a private oncologist now and hope to have this sorted out by next week. I’m honestly a bit lost as to how this entire process works, so if anyone has any advice, please let me know...
Dad is up and walking a little, eating everything, and accepting visitors. He was even humming a tune yesterday.

Tumor markers: CA 19-9 117, CEA 6.7, CYFRA 21-1 30.2

Can someone help me make sense of this brain CT scan?
On the right parietal side, there's a hypodense, mostly fluid collection measuring about 64 x 62 mm on the transverse slices. It’s pressing against the lateral and third ventricles, causing a midline shift to the left of about 12 mm. Because of that, the right lateral ventricle's occipital and temporal horns look a bit wider, and the right basal cistern is narrowed due to some mild uncal herniation. The sulci on the right frontoparietal side are also effaced. There aren't any signs of recent ischemia, acute hemorrhage, or extra-axial collections.

feralsurfer72 said: The patient was evaluated by an oncologist who isn't recommending active oncology therapy, but rather just focusing on symptomatic care.

Did they confirm the exact type of tumor cells involved? If we are looking at pancreatic adenocarcinoma, then standard chemotherapy often doesn't yield much benefit. However, if it turns out to be small cell carcinoma, then treatment options definitely make sense.

I would strongly suggest seeking a second opinion as soon as possible and asking specifically about the histological type of the tumor. If the diagnosis is indeed pancreatic adenocarcinoma, you might want to ask for a specialist's opinion regarding therapy involving Sunitinib.

Hey feralsurfer72, really sorry to hear the findings aren't better news. My dad went through it too—bile duct cancer with liver and duodenum metastases, and his pancreas was likely hit as well. They told me the exact same thing about chemo not being an option. I even took him to see a private specialist, Dr. Miller, who felt the same way, though he suggested trying some milder therapy. But honestly, my dad’s condition just spiraled so fast we never even got to that point. That doctor is great, just pretty pricey. Sending all the strength to your dad in fighting this bastard.