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

Donna Ruiz67 said:I'm calling the palliative care team, but they can't get here to check on him until Monday. It’s honestly becoming a tragicomedy at this point. In the meantime, what should I do over the weekend if he starts struggling with pain control or nausea? Last time, the ER barely even showed up. He’s having a hard time breathing, so we have him on oxygen now. There’s probably something else that could be done to make him more comfortable. Besides asking my brother for advice, who else can I call?

Call 911. They rarely skip an intervention because every single call is recorded and logged.

Thank you. That was actually my plan—to record the calls—and honestly, I find myself automatically recording every single call on my phone now. I was hoping there might be another palliative care team out there so I wouldn't have to spend hours digging through the internet just to find someone to call. I feel terrible that I wasn't there the last time the paramedics showed up so I could give them a piece of my mind, but I had to work. It’s exhausting. You pay into Medicare for forty years, and then they still have the audacity to treat patients however they please. Every once in a while, I find myself having to raise my voice at a doctor or a nurse just to get them to finally do their jobs properly. It’s such a massive, unnecessary drain on my energy.
It’s especially disheartening when a specialist in the final stages simply writes down a treatment plan based on what *I* suggest would be best, just to get through it. It’s absolutely maddening; the whole system is broken. Making difficult decisions isn't an issue for me, but this has truly crossed a line.
I’ve read almost every single post in this thread, and somewhere you mentioned that when you're fighting against the healthcare system, you can face just about anything. That is profoundly true. At this point, I really don't care about anyone else's feelings, nor do I feel any particular respect toward them; I will remain polite if—and only if—they do the same.
My primary focus right now is taking care of my family, but I am definitely planning to send an email to the Ministry. I haven't quite figured out the best way or where to direct it yet, and it probably won't change a thing, but silence is consent, and I refuse to be silent.

I know exactly how you feel—that’s how we all held on, just refusing to give up until the very end. I was constantly digging through articles, trying to find any scrap of information I could, and I’d bring everything to my dad’s oncologist during our check-ups. She was honestly wonderful; she never made us feel like a burden and always took the time to walk us through everything. She once told us she treats every single patient like they’re her own family, and you could really see it in the way she worked.

Before her, Dad had another oncologist who managed his care for the first year before she moved abroad for work. She was incredible—she stepped in right when everyone else seemed to be writing him off, and thanks to her, Dad managed to pull through and have two and a half good years left.
When we first asked her about the prognosis, she wouldn't give us a straight number. Instead, she explained that even doctors can't truly know how long someone will live, regardless of how dire the situation looks—even though the other hospital had already told us he only had a month left before he was admitted to the Mayo Clinic. She insisted they never give specific prognoses to patients.

Luckily, things are okay with the head for now, and Medrol is keeping it under control. Our doctor mentioned that sometimes it actually takes more time after radiation for the edema around brain metastases to subside and for symptoms to ease up—mostly because radiation causes tissue necrosis, which can temporarily spike the swelling and make symptoms worse.

Medrol really wore my dad down, too. Between the medication and the depression he was dealing with, he just didn't have the energy for anything, which led to muscle loss (not full atrophy, but he definitely weakened) since he wasn't moving much. That’s one of those classic steroid side effects—you really have to try and nudge them to move around as much as possible, even if it's just around the house, provided they're physically able.

As for the lungs, I’m not entirely sure what to tell you. Maybe some radiation might help, but the big question is whether they’d even want to put him through that when he’s this weak, and how long he’d have to wait to start. And again, it takes about three weeks for radiation to actually show results—to get those tumor cells to start dying off.

If that were an option, the best and fastest route would be to get him admitted to the hospital, stabilize him, get the lung radiation done, and then discharge him back home.
The real question is whether the medical team will be willing to do it—though, honestly, they should be doing everything possible to improve his quality of life, and radiation falls under palliative care anyway.

For my dad, his spine was only treated once with palliative radiation at a dose of 8 Gy, and that was enough to completely wipe out the pain within two months. Before that, he’d spent two months almost bedridden from the agony, relying heavily on patches and morphine pills alongside the patches.

I remember what you shared about your dad—how he actually did a little victory dance in the air after tossing those stakes, if I recall correctly. Seeing him like that after two months gave me so much hope. It’s become my personal litmus test; whenever I meet a doctor, I find myself wondering if they’re the kind of person who would truly go above and beyond for their own family.
Unfortunately, they won't be able to use the radiation because he’s just too weak. I can see it happening right before my eyes. Just a month and a half ago, they couldn't even get him stabilized, and I think in my sheer desperation to help him, I've been trying to manage everything on my own. Now, it’s the nausea that’s really taking its toll. I haven't been able to get it under control yesterday or today. To make matters worse, while he didn't have any pain at all yesterday, today he's been dealing with it for about ten minutes. Neither Zofran nor Reglan seem to be doing the trick, and it feels completely absurd that Zofran and Setronan haven't even been in stock at the pharmacy for a week now. I'm currently trying Ranitidine ampoules since Peptoran 100 was the last thing that seemed to help, but I'm not sure it's making an impact. I'm torn about whether to give him Medrol; his head isn't hurting, but I'm terrified that increasing the dosage might just make the nausea even worse, creating this endless cycle. It's just incredibly difficult, honestly. What hurts the most is this overwhelming feeling that I can't—or simply don't know how to—fully ease his suffering.

Donna Ruiz67 said:I remember reading about your dad—how he practically danced when he finally managed to toss those IV poles aside after two months. That gave me so much hope. Honestly, I ask every doctor I meet if they’d actually do what they’re doing for their own family.
Unfortunately, they won't radiate him because he's just too weak—I can see it happening right now. Just a month and a half ago, they couldn't even get him stabilized; I think in my desperation to help him, I’ve been trying to handle everything on my own. Now, it’s mainly the nausea that’s killing him. I haven't been able to get it under control yesterday or today. Meanwhile, the pain was basically non-existent yesterday, but today it’s hitting him for maybe ten minutes at a time. Zofran and Reglan aren't doing a thing, and since Zofran and Setronon have been out of stock for a week, it’s just absurd. Right now, I’m trying Ranitidine ampules because Peptoran 100 helped last time, but it doesn't seem to be working. I’m torn on whether to give him Medrol—his head doesn't hurt, but I’m terrified it might make the nausea worse, and then we’re just stuck in this endless loop. It’s just bad, plain and simple. What hurts most is feeling like I can't—or don't know how to—fully ease his suffering.

Yeah, he definitely did that little victory dance with his IV poles once he finally stood on his own two feet after being bedridden for two months.

Back then, we used to buy our dad something for the nausea during chemo ($50 10 tablets, 8 mg each); the active ingredient is Ondansetron—which is the exact same stuff in Setronon and Zofran, so it's effectively the same drug—so maybe ask if they have that available, assuming he has no trouble swallowing pills.

There's also Aloxi, which is supposedly the heavyweight champion of nausea meds, though from what I read, it’s only given intravenously (we didn't end up using it) and it’s pretty pricey (around $200).

Look, my dad was incredibly weak and doing terribly at the start of his illness. If that one doctor hadn't decided to try low doses of chemo first to see how he’d react, he wouldn't have lasted more than a month.
And even though he was in such rough shape, they still did radiation on his spine just to improve his quality of life and manage the pain, even though they could have just sent him home with pain meds.

It’s different everywhere—every hospital and every doctor handles things differently. Thank God, we got incredibly lucky with both of our doctors, and I am grateful to heaven for everything they did for my dad.

True, things work differently everywhere you go. The saddest part of this whole ordeal is realizing that your only sense of relief comes when doctors actually do their jobs effectively and a person isn't left in constant agony.
We have poured so much effort into fighting through the healthcare system, spending countless hours navigating it since we first arrived at the Mayo Clinic about ten days ago, all while constantly scouting for supplemental options in the background. It breaks my heart that there isn't an easier way to get him scanned privately; instead, we feel completely at the mercy of the institutional system.
Unfortunately, I have to admit that everyone has told us the exact same thing—whether it was private specialists, family friends, or the hospital staff. At least they are being consistent, even if we refuse to give up. I would take him anywhere in the world if I could, but he wouldn't agree to it earlier. He kept waiting for the chemo, and it eventually took such a toll on him that he simply couldn't get out of bed anymore.
Everything happened far too quickly. At least three different doctors mentioned that tumors don't typically spread to the brain that rapidly, but honestly, those medical explanations don't mean much to me right now. I truly believe it's better to be without certain things in life than to be without happiness.
Of course, I’ve been picking up all sorts of alternative remedies, and they were actually working wonders until the chemo wore him down and those brain metastases resurfaced.
Right now, he can't handle any solid food or liquids, so I am buying everything in liquid vial form. I might still try Aloxi, though—thank you, Rachel Wood27, for that information. I have truly found myself reading through the discussions on microcellular assemblies with everyone here, feeling both moments of hope and deep sorrow.

Can anyone shed some light on these pathology results? We all know the news isn't good, but is there any glimmer of hope left?
The report describes fragments of the bladder wall where the muscle layer is largely obscured by tumor tissue. This tissue consists of irregular glandular formations lined with atypical cylindrical epithelium of moderate polymorphism, accompanied by a significant desmoplastic stromal reaction. Immunohistochemically, the tumor cells test positive for CDX2 + CK20 and mostly for CK7, while remaining negative for HMWCK and GATA3, showing cytoplasmic and membranous staining for beta-catenin. The findings are consistent with a well-to-moderately differentiated enteric-type adenocarcinoma. While primary bladder adenocarcinoma is a differential diagnosis, the possibility of adenocarcinoma infiltration from the colon must be considered, necessitating further clinical investigation.

Rebecca Brooks19 said:Can someone please explain these pathology results to me? I know they look bad, but is there any actual hope left??
Fragments of the bladder wall are visible without clearly identifiable muscle layers, heavily infiltrated by tumor tissue composed of irregular glandular formations lined with atypical cylindrical epithelium of moderate polymorphism, some showing a pronounced desmoplastic stromal reaction. Immunohistochemically, the tumor cells are mostly CDX2+CK20+, with CK7 being positive in some areas, while HMWCK and GATA3 are negative, showing cytoplasmic and membranous staining for beta-catenin (without nuclear staining). The findings correspond to a well-to-moderately differentiated enteric-type adenocarcinoma. While primary bladder adenocarcinoma is a differential diagnosis, infiltration from colorectal adenocarcinoma is also considered, so clinical follow-up is recommended.

Oof, that's spread quite a bit. It isn't crystal clear whether it moved from the bladder to the colon or if it started in the colon and hit the bladder. Statistically speaking, though, it’s more likely coming from the colon.
We are looking at metastatic disease here, which is inherently a difficult circumstance to manage.
That said, there is always a realistic glimmer of hope. We just have to pray the treatment responds well enough to reach at least a state of stagnation where the disease stops spreading further. You just have to take it one day at a time and try to stay level-headed.

Angela Wright said:It seems to have spread quite a bit, though whether it’s moving from the bladder to the colon or vice versa remains uncertain. Statistically speaking, the colon is the more likely culprit.
Given that we are dealing with metastatic disease, there is no denying the gravity of the situation.
Still, hope isn't entirely lost. We can only pray she responds well to treatment and reaches at least a state of stagnation without further metastasis. One simply has to take it one day at a time, with a clear head.

Thank you for the prompt reply. The CT scan came back clear; she’s headed into surgery now, and then we shall see...

Rebecca Brooks19 said:Thanks for the quick reply. The CT scan came back clear; she’s scheduled for surgery now, so we shall see how it unfolds...

If the colonoscopy confirms the issue is in the large intestine, would they need to remove the bladder as well? Following her initial bladder surgery, the CT results were unremarkable.

Basically, they’re going to cut out everything they can get their hands on that's touched by the tumor mass. We won't know the full extent of the damage until they actually open him up.
If I’m following correctly, hasn't he already undergone surgery? If that's the case, the surgeons would have cleared out everything in the vicinity during the procedure. As far as the bowel is concerned, the issue doesn't necessarily have to be a massive growth. It could just be a polyp that turned malignant and started spreading metastases toward the bladder. They'll likely need to run a colonoscopy as well.

Much appreciated. Is there any additional information available regarding whether it is preferable to have the surgery here in Washington, D.C., or will the outcome remain the same regardless? Many thanks.

Rebecca Brooks19 said:Thanks so much. Can anyone give me more info—would it be better to go to Washington, D.C. for the surgery, or is it going to be the same everywhere? Thanks again.

If it were me, I’d do it. Maybe I’m being a bit unfair to other hospitals, but for this specific thing, Mayo Clinic is the place I’d pick.

I’m not sure if you noticed I edited my post after you already replied to it...

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I missed that. Thank you. He underwent bladder surgery—performed via catheter rather than an incision. Now that the results are in, it looks like a total bladder removal is likely on the horizon.

Does anyone know if Dr. Simoncini's therapy actually yields results? I just received a recommendation from someone who sought treatment from him today.

Rebecca Brooks19 said:Does anyone know if there's any actual benefit to Dr. Simoncini's bicarbonate therapy? Someone who actually saw him just recommended it to me today.

No. The guy is basically a con artist; they actually kicked him out of the medical association in Italy. He's facing criminal proceedings because people who put their blind faith in him ended up dying.
It’s a completely nonsensical, baseless theory. Just because he had a "theory" didn't give him the right to start playing God and making up random dosages of soda injections.
Word is, everyone in California knows to stay far away from him.

Can someone please help me out here..

I'm stuck hunting for answers all by myself... It's about my dad (73 years old). He had prostate cancer surgery almost 5 years ago. Recovery was great, he was basically back to 100% of his normal life.

Then last November, the disease came back. His PSA levels were showing at 0, but regardless, the CT scans showed clusters on his bones and lungs.
They put him on Zometa at the start of the year.
But things are going downhill fast. He insists he isn't in pain, though. He keeps clinging to hope for a recovery and barely talks... he just keeps everything inside. He’s being so stubborn he won't even let me see his medical reports. I managed to sneakily snap some photos of his latest results.🙄
And don't even get me started on the doctors. They won't give us any info. Our family doctor just shrugs her shoulders and says things are moving quickly.

He's lost over 45 lbs.
Just this past month, I practically had to stop him from trying to take the bus to his appointments... he's incredibly headstrong. Now he's seeing for himself that he just can't do it anymore. And still, he claims nothing hurts.

His most recent report says:
Lung X-ray; right side along the lateral thoracic wall, 17 cm long and 3.5 cm thick; identical pathological substrate on the left lateral thoracic wall, 17 cm long and 1 cm thick (findings suggest an infiltrative process of the bone pleura) - progression.
The prescription is for the second cycle of Taxotere 120 mg along with Zofran amp, Decadron 12 mg amp, Valium pills, Prilosec amp, and Symdex amp.

On top of all that, he has a lump on his Ribs the size of a fist, and one on his head the size of an egg. He let me sit in with the oncologist during the last exam, but I couldn't ask much... I felt like pushing too hard would just crush him.

He's struggling to breathe... please, can someone make sense of these results for me?
Are there any support groups or associations for families dealing with patients? Just need some kind of guidance... anything.

Sorry for the long post.

Angela Wright said:Whew, it’s spread quite a bit. It isn't clear if it moved from the bladder to the colon or vice versa, though statistically, the colon seems more likely.
Since we're looking at metastatic disease, that’s definitely a tough circumstance to deal with.
Still, there's always realistic hope. Let's hope the treatment works and we can at least reach a point where the disease stabilizes without further metastasis. Just taking it one day at a time with a level head.

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This report doesn't actually confirm it's metastatic disease. What it shows is uncertainty about whether the primary tumor is in the bladder (where the biopsy was taken, rather than through radical surgery) or if it originated in the colon and spread directly to the bladder based on cell appearance. A thorough imaging review—specifically of the abdomen, pelvis, and chest—is needed first. If the scans show the tumor is localized, then we can look into radical surgery.

Kate Wells44 said:This report doesn't necessarily indicate metastatic disease. It simply fails to clarify whether the primary site is the bladder—where the biopsy was taken rather than through radical surgery—or if it originated in the colon and spread directly to the bladder based on the cellular appearance. A thorough imaging workup of the abdomen, pelvis, and chest is required. If those scans confirm the tumor is localized, radical surgery should be pursued.

Thanks. ☺ So, does this mean there might not be metastases yet? Does an okay abdominal CT imply that?

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