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

gentlenomad43 said:My mom has wounds on her abdomen and groin—the doctors say it's Non-Hodgkin lymphoma breaking through the surface—and her primary care physician said they need to be cleaned because they've become infected, but the hospital refuses to do it. Can anyone recommend a private surgeon who could handle this? I think a surgeon cleaned something similar for her once.

Thanks in advance for any help

You want to know how you get this done? You walk into that hospital, demand they actually do their jobs, and you don't leave until they do. She’s their patient, and dealing with stuff like this is exactly what hospitals are for. If they won't budge, call the news stations or demand a written explanation as to why they're refusing to provide medical care to my mother. Look, if being reasonable doesn't work, you have to go nuclear. In my experience, that's the only thing that ever gets results.

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I’m with you on that one. Honestly, I find it absolutely mind-boggling that they wouldn't even want to debride a purulent wound. It's frankly appalling.

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The CTA results just came in:

LDH dropped down to 203—it was nearly 290 before this.

I’m a bit confused... what exactly is a small omentum? Looking back at the first CTA report, there wasn't any mention of lymph nodes except for the one in the abdomen, and even that isn't mentioned here. Is it possible they're talking about the same thing?

And those stubborn little nodules in the lungs haven't moved at all. Not even a millimeter. Could it be something else entirely? Does the fact that they haven't budged mean those cells within the lung have somehow become resistant? Or could it be something else... maybe just scarring? Or some lingering inflammation?

What kind of next steps might they take regarding that adenoma?

I’m going to try to be a bit "mathematical" about this—if we look at the dimensions as length x width x height (depth), it actually looks like it has shrunk significantly in length, but by about 2 cm in both width and depth.

What specific questions should I bring up with his doctor tomorrow? We're heading into our fifth round of chemo now.

And honestly, he’s been incredibly irritable lately—we've been bickering over the most trivial things for the last two days.

My dad was diagnosed with stomach cancer. It’s already spread to his liver and abdominal lymph nodes, though all the tumors are under 2cm. He just finished his third round of chemo, but the MRI came back showing disease progression—things have actually taken a turn for the worse. Apparently, the chemo didn't do a thing. They’re switching up his medication, so we’re starting from scratch next week. Does anyone here have experience with this specific type of cancer or cases where chemotherapy fails to work? He’s 60 and honestly, he’s still full of energy and staying incredibly positive.
The strange part is that through all three cycles, he hasn't had a single side effect. No pain, nothing. He feels like the healthiest man on the planet.

ruggedfox11 said:The CTA scan results just arrived:

LDH dropped down to 203 from nearly 290.

I’m a bit confused... what exactly is the omentum? The first CTA report didn't mention any lymph nodes except for the one in the abdomen—and that isn't mentioned here either. Could they be referring to the same thing?

As for those pesky little nodules in the lungs, they haven't moved at all. Not even a tiny bit. Could that be something else entirely? Does the fact that they haven't changed mean those cells within the lungs have developed some kind of resistance? Or perhaps it's just scarring? Or maybe inflammation?

What should they do regarding that adenoma?

Now, I’m going to be a little "mathematically precise" here—if we look at dimensions as length x width x height (depth), it looks like it has shrunk significantly in length, but by about 2 cm in terms of width and depth...

What should I ask his doctor tomorrow? We are heading into the fifth round of chemo...

And honestly, he’s been incredibly cranky lately—we’ve been bickering over the most trivial things for two days now.

Based on the abdominal CTA findings, there is a good response to the chemotherapy, so the current treatment plan will continue.
The omentum is simply the abdominal lining.
Regarding the adrenal adenoma, no action is taken because those are benign enlargements.
Even if we weren't talking about benign adenomas but rather metastases, nothing would be done right now because the overall response to the therapy is considered satisfactory.

One shouldn't expect miracles; a response to chemo is usually a gradual process. You should be encouraged that the tumor is reacting, and try not to stress too much over the specific dimensions of every single little nodule—after all, medicine isn't quite as exact as mathematics.

ruggedfox11 said:The CTA results just came in:

LDH dropped down to 203 from nearly 290.

I’m confused... what exactly is the omentum? The first CTA report didn't mention any lymph nodes except for the one in the abdomen, and now that isn't mentioned at all. Is it the same one?

And those stupid little nodules in the lungs haven't moved an inch. Not even a tiny bit. Could that be something else entirely? Does the fact they haven't moved mean those cells inside the lung have developed some kind of resistance? Or is it something else—like scarring or inflammation?

What can they actually do about that adenoma?

I’m going to try being a bit "mathematical" here: if you calculate dimensions as length x width x height (depth), it looks like it shrank significantly in length, but by about 2 cm in both width and depth.

What should I ask his doctor tomorrow? We're heading into round five of chemo.

And he is being a total nightmare right now; we've been bickering over nothing for two days straight.

The omentum is the fatty layer that protects your abdominal organs.
Don't think of tumors as these perfectly shaped, solid objects. You have to look at the total volume they occupy.
Look, the results are great—it's regressing, and that is the only thing that matters. Don't lose sleep over the rest of it.
As for the nodules, yeah, they can stay enlarged from old infections you had ages ago, and they just stay that way.
There it is: one battle won, now we move forward. Just stay calm, steady, and don't let the nerves get to you. Great job handling this!

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silvertrucker73 said:My dad was diagnosed with cancer. It’s stomach cancer with metastases in the liver and abdominal lymph nodes—all tumors are up to 2cm. He just finished his third round of chemo, but the MRI showed disease progression; everything got worse. Basically, the chemo didn't work at all. They’ve switched his medication, and they're starting from scratch next week. Does anyone here have experience with this specific type of cancer or cases where chemo fails to respond? He's 60 and still full of energy and positivity.
Through all three cycles, he hasn't had any side effects—none. No pain, nothing. He feels like the healthiest man in the world.

The tough reality here is that by the time your father's illness was caught, it had already spread significantly through distant metastases. When a disease reaches this stage, treatment generally shifts toward trying to halt the progression and squeezing out as much high-quality time as possible.
Clearly, that first combination of drugs wasn't a winner in that regard, so let's hope this next line of defense shows more efficacy.
I also strongly suggest looking into clinical trials he might be eligible for. To be perfectly blunt, I don't know what the realistic odds for remission are with the current standard therapies available. In some of my recent posts, I talked about how to search for these studies and included links explaining the process.
Unfortunately, because the stage is advanced and there are distant metastases, the chances of total remission decrease. Focus exclusively on extending the quality of his life; if you do that, who knows? Weeks can turn into months, and months can turn into years. You live one day at a time—don't look further ahead than tomorrow's lunch. It’s a blessing that he’s so full of life, so let him live it fully within the limits of this situation. Protect his dignity and let him do everything that has brought him joy up until now, and make sure you join him in that.

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Getra, Jane, thanks

I wasn't looking at those measurements from a strictly mathematical standpoint—it was more about trying to get a real sense of the actual scale of things.

I did save the CTA scans onto my computer, but honestly, looking at them is just a total headache 🙂

The doctor was absolutely thrilled with the results, and I have to admit, my ego got a little boost from that—mostly because I’d been insisting from the very beginning that the overgrowth wasn't actually a target. :D

I'm mostly just trying to parse through everything myself since I didn't join him for the last doctor's appointment, so I don't have all the specifics of what was said.

There are just two more rounds of chemo left, and then I am finally done.

Just wanted to check in and give an update. Dad starts his final cycle before the CT scan next week. For now, the primary tumor is holding steady—actually, it seems to be shrinking compared to previous scans. I’m feeling a bit lost on what comes after this fourth round of chemo, though. Does he move straight to a second-line treatment? I can't quite wrap my head around the protocol, especially since I know it isn't going to disappear entirely, and honestly, Dad is having a harder and harder time tolerating the platinum-based stuff.

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Robin Diaz4 said:I just wanted to check in—my dad starts his final cycle before the CT scan next week. As of now, the primary tumor is holding steady, and the metastases actually seem to be shrinking compared to the last check. I’m honestly a bit lost on what comes after this fourth round of chemo, though. Does he move straight to a second line of treatment? I don't quite grasp the protocol... it's unlikely the cancer will fully vanish, and truthfully, my dad is having a harder and harder time tolerating the cisplatin.

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Once the fourth round is done, they'll evaluate everything based on the CT results and decide how many more cycles he needs to undergo.

Usually, they move to a second line if things start growing again within six months of his last chemo session—though, technically, it counts as the first line again if it resurfaces after that six-month mark. :-)

Robin Diaz4 said:Just checking in—Dad starts his last cycle before the CT scan next week. For now, the primary tumor is "stable," and the metastases are actually shrinking compared to before. I’m just lost on what happens after this fourth round of chemo. Do they move to a second line of treatment? I don't really get how the process works, because there's no way this is going to disappear completely, and Dad is having a harder and harder time handling the platinum treatments.

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Chemo has a long tail. When you're dealing with a metastatic diagnosis, anything that isn't active disease progression is generally considered a win by the medical team. They’ll monitor how things evolve and weigh the possibility of surgical interventions or other moves. If things take a turn for the worse, they pivot to a second line of defense immediately.
The hard truth about metastatic cancer is that when things start sliding backward, you have to face that reality as fast as possible, no matter how much it sucks. Nobody ever tells you the real strategy here: the goal isn't "finding a cure" or "achieving remission"—it's "extending quality of life."
Which means:
Now is the absolute best time to start looking into clinical trials!

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I’m constantly scouring the landscape for clinical trials. Most of what’s currently on the table is either already full or we've missed the window because they’re looking for patients who haven't even started their initial treatment yet—or worse, they're still just gathering candidates and who knows when they'll actually get off the ground. Still, I refuse to lose hope!

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We officially kicked off our fifth round of chemo yesterday.
This time around, the side effects hit almost immediately—we're talking full-blown nausea by the same day, and then there was the vomiting in the middle of the night. It's reached a point where even taking the Reglan or Peptol doesn't seem to touch it anymore.
Does anyone have any insight into what might be causing this sudden shift?

ruggedfox11 said:We kicked off our fifth round of chemo yesterday.
The side effects hit like a freight train immediately—nausea started the same day, then vomiting through the night. Even the Reglan and Pepcid aren't touching it anymore.
Any ideas what's going on?

Try some popcorn popped on hot air, or maybe soaked flaxseed in warm water—let it sit, strain it, and drink the mucilage. Or just stick to Coca-Cola and ginger... honestly, what works for one person might do absolutely nothing for another.

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Use Rehydralyte to prevent dehydration. If the vomiting persists—say, every 20 to 30 minutes, or if it happens more than eight times in a single day—you really ought to call 911. They’ll likely administer an injection of Reglan, which, in my experience, works far more effectively than trying to force down tablets.

My father went through something similar—he was given a Reglan injection and an IV drip after he couldn't stop vomiting four times in a row. Lately, though, his behavior has been... let's just say "regressive." He’s acting like a stubborn toddler, refusing to touch anything remotely healthy, and snapping at anyone who breathes in his direction. It’s a vicious cycle: he gets worked up over nothing, which triggers his breathing issues, making him even more agitated. Then, the moment I suggest calling the doctor or heading to the ER, he suddenly decides he’s perfectly fine, despite clearly being in distress. To top it all off, he wakes me up two or three times a night claiming he isn't feeling well, only to tell me in the morning that I shouldn't "bother" his wife because he’s "doing just fine now."

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We finally got the Ondantor

Robin Diaz4, honestly, that behavior is just classic guy stuff—you know, if you want to call it anything other than being childish. My partner is exactly the same way, and it always brings back those memories of my own childhood mishap. I remember falling and completely breaking my nose, from the tear duct all the way down to the bridge. While everyone else was busy scrambling to grab the car keys, I just stood there, watching the bleeding stop for a second, and calmly told them, "We don't even need to go anywhere now; the bleeding has stopped," haha.

Hey everyone—wishing you all strength in your own battles against this nasty, relentless disease.
Fourteen months ago, my mom was diagnosed with colon cancer that had already spread to her liver. After she cleared the initial colon surgery, she had to go under for a liver procedure too. At that point, there were three small metastases left on the liver.
She went through eight rounds of chemo. By the third round, two of those spots had vanished, leaving just one stubborn 3mm spot. Mom was so proud—she was brave, hopeful, and really fighting. After the eighth round, that last little thing shrank down to 2mm.
Her appetite came back, her immune system bounced back, and she actually gained 7 lbs—everything seemed to be looking up. Then, her oncologist switched her over to oral chemo—pills, basically. She called them "maintenance pills."

That’s when everything just fell apart.
Two doses into the pill regimen, and she started dealing with horrific pain in her gut and around her liver. The weight loss and loss of appetite followed immediately. It's been three months since then. Now, she’s bedridden, barely able to manage two or three spoonfuls of soup a day, just enduring constant, agonizing pain. Right now, she's on 75mg patches along with Sevredol and Zotramid. My dad and I are absolutely devastated—it’s heartbreaking to watch. She’s dropped 15 lbs in three months. For the last ninety days, she’s lucky if she gets an hour of sleep a night; the rest of the time, she’s just crying out from the pain.

We managed to get her to a CT scan last week. The results were grim—massive progression. The cancer has spread almost everywhere. Yesterday, my dad and I met with the surgeon who handled her liver surgery.
He told us straight up: there’s nothing more they can do. He just squeezed our hands and told us she likely has about a month left. 😢

If you ask me, those damn maintenance pills are to blame. 500mg, four times a day. They completely wrecked her immune system and fueled the fire. Even the oncologists were baffled by how fast she crashed—they even asked *us* if she was taking the right pills. As if she’s too stupid to know what she's swallowing! She took exactly what those doctors prescribed. And after all that, now they're suggesting we send her to the Mayo Clinic just to check if she's having an allergic reaction to the meds. Honestly, I'm just so incredibly angry at the whole situation.

Is it actually possible for those types of pills to cause such a sudden, violent decline? Did the doctors miss the mark with her treatment?
Does anyone have experience with managing pain when even the patches aren't cutting it anymore? I know there are 100mg patches available, but I doubt that will make much of a difference.
How do people even access liquid morphine?

Sorry if this is heavy, but I just needed to get this off my chest. 😢

Good luck to everyone else out there fighting. Hang in there.

wearyskipper20 said:Listen, everyone, I want to wish you all strength in your fight against this brutal, sneaky disease.
Fourteen months ago, my mom was diagnosed with colon cancer that had spread to her liver. After a successful surgery on her colon, she had to undergo liver surgery too. There were three small metastases left on the liver.
After that, she went through eight rounds of chemo. By the third round, two of those spots had vanished, leaving just one large 3mm lesion. Mom was feeling proud, brave, and hopeful. Following the eighth round, that same spot shrank down to 2mm.
Her immune system bounced back, her appetite returned, and she gained 7 kg—everything seemed to be looking up. Then, the oncologist switched her to oral chemo. She called them "maintenance pills."

That’s when everything fell apart.
Two doses into the pill regimen, and my mother started suffering from agonizing pain in her gut and near her liver. She lost her appetite and her weight plummeted. It’s been three months since then. Today, Mom just lies in bed, barely able to swallow two or three tablespoons of soup a day while enduring unbearable pain. Right now, she’s on 75mg patches and taking Sevredol and Zotramid for the pain. My dad and I are absolutely shattered; watching her like this is torture. She’s dropped 15 kg in three months. For the last three months, she’s only slept about an hour a night; the rest of the time, she’s just moaning in pain.

We finally managed to get her to a CT scan last week. The results show massive progression. Almost everything is overtaken by metastases. Yesterday, my father and I met with the surgeon who operated on her liver.
He told us there’s nothing more that can be done. He squeezed our hands and told us she has about a month left to live. 😢

If you ask me, those damn maintenance pills are to blame for everything. 4x500mg a day. They wrecked her immune system and fueled the cancer. Even the oncologists were baffled by how fast things took a turn for the worse. They even had the nerve to ask if she was taking the right pills—as if she’s stupid enough not to know what she’s swallowing. She took exactly what those hacks at the oncology clinic prescribed. And after all that, they have the audacity to say they might need to send her to Mayo Clinic just to check if she’s allergic to the medication. Honestly, screw them all.

Can anyone tell me if it’s actually possible for these pills to cause such a sudden, violent decline? Did the doctors mess up the treatment plan?
Does anyone have experience with what to give a patient when even the patches aren't cutting it anymore? I know there are 100mg patches available, but I doubt that will make any real difference.
How do we get access to liquid morphine?

Sorry if I’m dumping this on you all, but I just needed to tell someone. 😢

Good luck to everyone in your own battles. Hang in there.

Ask the oncologist if it's possible to move her back to the previous line of therapy, because that's what actually worked. I assume she hit a Relapse because of the Xelod.
One thing that keeps bothering me is that the 3mm metastasis wasn't surgically removed.
Unfortunately, dealing with metastatic disease is exactly what I mentioned before—it’s about squeezing out whatever quality of life is left. You stop thinking about remission. Treatment at this stage is basically Russian roulette or shooting into the fog.
You absolutely need to seek a second opinion. Look into seeing a private oncologist like Dr. Cepulic.
Regarding the pain, go to a pain management clinic so the anesthesiologists can titrate a specific cocktail of meds to stabilize her, and so they can teach you how to administer a dose as needed.

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Angela Wright said:Look for an oncologist who can get her back on her previous treatment line—since she actually responded to it before. I’m guessing the unnamed happened while she was on unnamed.
What bothers me most about this whole situation is that they didn't surgically remove that 3mm metastasis.
Unfortunately, when dealing with metastatic disease, it’s what I mentioned recently—it’s all about squeezing out more quality time. You aren't really looking for remission anymore. Treatment at this stage feels a bit like Russian roulette—just shots fired into the fog.
Definitely seek a second opinion. You might want to reach out to a private specialist like Dr. unnamed.
Regarding the pain, get her into a palliative care clinic so the anesthesiologists can fine-tune a specific medication cocktail to manage it—and they can teach you how to adjust the dosage as needed.

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Thanks for getting back to me so fast. Honestly, I'm terrified that suggesting chemo now would be too late—she's so frail that aggressive treatment might just take her out right then and there. I forgot to mention that she’s started losing touch with reality lately. She’s talking nonsense and claiming people visited her that we haven't seen in years.
She’s even accusing us of hiding her pain meds, even though they're sitting right next to her—I won't list everything, but you get the idea. My gut tells me the cancer has spread to her brain. 😢

Right now, our only goal is to manage her pain and make things as comfortable as possible for her.