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

brightotter67 said:I’m looking for some insight regarding those patches, and also where’s the best or fastest place to get scheduled for a scintigraphy? We’re coming from Washington, D.C.
Regarding that prescribed Zaldiar—which is basically just a mix of paracetamol and tramadol—we’re in a bit of a bind because her oncologist strictly forbade paracetamol due to liver concerns. Out of all the options, what would be the "lesser of two evils" to help manage her pain?

Buprenorphine (which is what you usually find in those patches) isn't quite as hard on the kidneys as it is on the liver. It’s one of the heavy hitters among opioid analgesics; in fact, unlike tramadol, it can actually be used to help people through opioid withdrawal. Buprenorphine and methadone (like heptanone) are both used for that purpose. If paracetamol is off the table because of the liver, there’s a real chance buprenorphine could run into similar issues. Though, honestly, I don't quite get the panic over paracetamol—it’s a very safe drug if you stay within the dosage limits. You shouldn't take more than 1,000 milligrams (one gram) at once, and she probably shouldn't exceed three grams in a day. Hospitals sometimes push it up to four grams, but I tend to follow the American guidelines, which set the max daily dose at 2.6 grams.

In principle, I don't know which specific med won't impact the liver or kidneys—they're all potentially harmful if you're on them long-term. Unfortunately, it really just comes down to picking the lesser of two evils.

brightotter67 said:Hey everyone!
Unfortunately (but also luckily), I’ve been following and reading this thread for the last year.
Last May, my mom was diagnosed with colon cancer that had already spread to her liver and lungs. She went in for surgery at the end of June 2018 and now has a colostomy bag.
Yesterday, she ended up in the ER because of intense pain in her shoulder blade and lower back that she’s been feeling for a while. Given everything else, they suspect bone metastases.
The recommendation is to get a bone scan done on an outpatient basis, check in with the pain management clinic, and ideally see her oncologist.
Regarding medication, the ER prescribed her a Zaldiar tablet and Transtec 35mg patches. Right now, she’s taking Ketonal forte, but that only seems to help for a tiny bit.
She isn't currently undergoing chemo; her last round (the 4th cycle of 5-FU/LV) was administered on March 11th, after which her CT scans showed things were stable. Her last visit to the oncologist/tumor board was a month ago, where they decided to hold off on further chemotherapy because she’s only 47 kg and is nutritionally depleted. They told us to reach out once she gains some strength and feels better. We plan to contact the oncologist as soon as we get the bone scan done.
I’m looking for your experiences with those patches, and does anyone know where the best or fastest place is to schedule a bone scan? We are based in Washington, D.C.
As for the prescribed Zaldiar—which is a mix of acetaminophen and tramadol—we’re stuck. Her oncologist strictly forbade her from taking acetaminophen because of her liver. In this situation, what’s the lesser of two evils to help manage her pain?

It isn't actually within an oncologist's scope to decide if and how much acetaminophen will damage the liver; that’s a call for the anesthesiologist working in the pain management clinic. They will titrate the exact dosage and the specific cocktail of pain meds, then guide you on how to scale the dose up or down depending on the situation.
Regarding the bone scan, I'm not sure how fast the scheduling moves, but I think a standard X-ray might already show the status of the area in question. If it turns out to be a metastasis, radiation therapy can be very successful as a palliative measure, which would automatically take care of the pain too.
If she hasn't started already, Mom should begin consuming nutritional supplements like Ensure / Prosure. I assume the oncologist noted this in the findings, and if so, you should be eligible for vouchers or assistance to get them.
As for continuing chemo after that last line, it sounds like that chapter is closed for now since there was a progression, assuming it is indeed a metastasis. Keep asking questions, though—maybe seek a second opinion regarding a different new line of therapy.
Hang in there, there is still plenty of room to fight!

If you're looking to get a scintigraphy done, your best bet is probably just scheduling it through your primary care physician. They can pull up the whole e-referral system and see which hospitals actually have open slots available right now.

Look, I apologize if I'm dumping this here—it might be slightly off-topic—but I was hoping someone could point me in the right direction or share some insight.
I’ve found myself in a pretty tough spot lately. I'm currently in the middle of treatment and need to get a follow-up CT scan done. The only appointment they could actually give me is at the hospital in Columbus. However, I’ve heard some whispers that their equipment is outdated and potentially unreliable... so now I'm debating whether it's worth doing it privately instead. If anyone here has had a scan done in Columbus, please let me know what your experience was like. Thanks, cheers.

Angela Wright said:Jane, please accept my deepest condolences. Given how far along things were when he was diagnosed, he fought an incredible battle to hold on for four years. That’s truly impressive. You should be proud to have had a father like him. May he rest in peace.

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Thanks for saying that. It was a hell of a fight.

I've gone through all the medical records from my father's final days in the hospital. That issue with his stomach definitely wasn't an ulcer. It was malignant. In the end, Dr. Belev couldn't even determine if it was a metastasis or a primary cancer. So, it’s possible stomach cancer was what actually got him. What I know for sure is that he had metastases in the peritoneum, under the aorta, in his lungs, bladder, and pelvis. By the time the disease was detected, the cancer was simply unstoppable. But thanks to my father's sheer will to live, and especially the magic hands of Dr. Kocman, who performed those incredible surgeries on him, we were gifted an extra four years.

Hello there,
About a month ago, my father (who is 72) was diagnosed with adenocarcinoma in the lower esophagus. It has already metastasized to his liver, lymph nodes, and his spine—the vertebral body (specifically the 10th thoracic vertebra) is almost entirely destroyed. He’s been referred for oncological treatment, and according to the initial assessment protocol, the recommendation is for radiation therapy, palliative care, followed by chemotherapy. Over the last two months or so, he has lost about 26 pounds.
I am really struggling with that word "palliative" in the first exam report. Does that mean the doctors have essentially "written him off"?
I would truly appreciate any thoughts or perspectives you all might have.

When we talk about palliative care here, we mean it's temporary—it doesn't necessarily mean we're just talking about managing symptoms and making someone more comfortable regardless of how bad things look. Palliative care isn't about curing the underlying disease, and in this specific context, they are explicitly talking about chemotherapy.

Don't overthink it. 🙂

Chloe Cook32 said:Hi there

My father (72) was diagnosed a month ago with adenocarcinoma in the lower esophagus, with metastases in his liver, lymph nodes, and spine (the T10 vertebral body is almost entirely destroyed). He’s been referred for oncology treatment. Based on the initial assessment protocol, the recommendation is "radiotherapy treatment, palliative. This will be followed by chemotherapy." Over the last two months, he has lost about 26 pounds.

That word "palliative" in the first assessment protocol really worries me. Does it mean the doctors have already "given up" on him?

Looking for some insight here.

Your father's illness is at Stage 4, which means the cancer has metastasized and spread. At this point, we aren't talking about a potential remission or a complete cure; we are strictly talking about extending the quality of life. Palliative radiation is meant to treat the specific metastasis that is actively ruining his quality of life. As long as curative medicine—the kind practiced in a hospital setting—can still help by slowing down the progression and ensuring he lives more comfortably, he isn't a "palliative patient." True palliative care is provided in hospice settings during the terminal phase, once curative options have nothing left to offer.
There is still plenty of room ahead for your dad to fight for a high-quality life.

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Angela Wright and Eric Newman75, I really appreciate you both getting back to me with those answers.

Hello,
I've been reading through your posts every night before bed, often falling asleep in tears, and I am just so grateful to have found this community.
About a month ago, my father was diagnosed with prostate cancer that has already metastasized to his bones. It’s an aggressive strain (rated 9 out of 10). For now, we are just waiting on the next steps regarding what will be done and how...
Does anyone here have experience with this specific type of cancer? Is it possible to maintain a quality of life, or are we looking at a terminal stage...
Any advice on hospitals, surgeries, or general recommendations?
Thank you.

Sophia Williams34 said:Any hospitals, surgeries, or recommendations?

Personally, I’d recommend MD Anderson Cancer Center (197 Main Street) to anyone; they really are a top-tier institution. Even if an operation can't be done right there, those doctors know everyone at the other hospitals—they'll find a way to make it happen.

Good luck! 🙂

Eric Newman75 said:I would recommend MD Anderson Cancer Center (197 Main Street) to anyone as a top-tier institution. If they can't perform the surgery there, those doctors know the specialists at other hospitals better than anyone and will find a solution.

Good luck! 🙂

Thanks

Chloe Cook32 said:Hello,
My father (72) was diagnosed about a month ago with adenocarcinoma in the lower esophagus, which has already metastasized to his liver, lymph nodes, and spine (the 10th thoracic vertebra is almost entirely destroyed). He’s been referred for oncology treatment. According to the initial consultation protocol, the recommendation is "radiotherapy treatment, palliative. This will be followed by chemotherapy." Over the last two months, he has lost about 26 pounds.
The mention of "palliative" in that first protocol is really weighing on me. Does that mean the doctors have essentially given up on him?
I would appreciate any insights.

Unfortunately, those are very grim prognoses. My mother passed away 15 years ago from cardia carcinoma (where the esophagus meets the stomach). She didn't have visible metastases at the time, but during surgery, they found the lymph nodes were already heavily involved. We tried everything—surgery in Vienna based on a gastroenterologist's recommendation, chemotherapy with Professor Vrdoljak in Miami, and every supplement imaginable. She lived for two years and four months, even though Professor Vrdoljak told us the prognosis was likely half that time. Prepare yourself for things to get difficult.

hiddenjackal17 said:When my mother passed away from breast cancer ten years ago, it happened so incredibly fast—almost overnight. It all started with a nagging cough and some back pain, and before we knew it, she ended up in the hospital due to breathing issues, passing away just two days later. No one, not even her, realized she was dealing with cancer and metastases. Up until those final moments, there wasn't a single hint of what was actually happening. By pure chance, she essentially lived out her diagnosis without ever knowing it, passing away thinking it was just bronchitis. Given her personality and how she viewed the world, perhaps that was the best possible outcome for her. I honestly don't think she could have handled the reality of aggressive treatments, radiation, or endless hospital stays; mentally, that would have broken her before anything else did. For us, though, it was a massive shock.
And when I reflect on my own approach, I am the complete opposite. I’m a bit of a health freak; I go for every checkup and preventative measure available, and I’m willing to try just about any test, medication, or therapy if it might help.
In my eyes, my mother's refusal to undergo screenings, mammograms, or routine checkups was ultimately an act of selfishness. Her fear of "finding something out" outweighed everything else. My primary thought is always, "What will happen to my children?" if something were to strike me tomorrow and I hadn't done everything within my power... but then again, we aren't all built the same way.

My mother passed away fifteen years ago from esophageal cancer. Immediately following her surgery, I knew a cure wasn't coming and that the prognosis was about eighteen months. In the beginning, we didn't even tell her the full truth; instead, we moved heaven and earth to ensure she received the absolute best care and treatment available. She lived for two years and four months, and since then, I've constantly wondered if we made the wrong call. She was always such a lady—someone who held herself with immense dignity and grace. I am almost certain that if she had known exactly what her life was going to turn into during that final year and a half, she would have refused the treatment altogether. On the other hand, I would have been haunted by the feeling that I hadn't tried everything possible. So now, I'm left wondering: should I have made it easier for her, or was I making it easier for myself? There isn't a clear answer.

Sophia Williams34 said:Hey,
I've been lurking here every night before bed, honestly falling asleep with tears in my eyes. I'm just so glad I stumbled upon this forum.
My father was diagnosed about a month ago with prostate cancer that has already spread to his bones. It's aggressive—rated 9 out of 10. Right now, we're just waiting on the next steps regarding what they'll actually do...
Has anyone dealt with this specific type of cancer? Is there any quality of life left, or is this basically the end stage?
Any advice on hospitals, surgeries, or recommendations?
Thanks

They actually recommended the Sister of Mercy hospital in Washington, D.C. for us back in the day—specifically the urology department—and man, it was a total bullseye.

Hey everyone,...
Has anyone else here, or maybe someone you know, actually gone through immunotherapy with Keytruda...?
I’d love to hear what you guys have been through... please share your experiences if you can...

So, my father just got diagnosed with non-small cell lung cancer, and he’s already started his first round of treatment...
It’s only happening in my face—my arms and legs seem totally fine—but this swelling started up about five days ago... Before... So, about those initial rounds of therapy... does anyone here have any actual experience with this? I'm just wondering if anyone knows what might be causing all that swelling to kick in...

Paul Garcia said:Hey everyone,
has anyone here or anyone you know gone through immunotherapy with Keytruda?
I'd love to hear about your experiences...

My dad was diagnosed with non-small cell lung cancer, and he just finished his first round.
The only thing is, his face is swelling up—his arms and legs seem fine, but his face... this started about 5 days before that first treatment. Does anyone know what might be causing swelling like that?

It could be some of the other meds he's taking. I mean, I dealt with my whole head swelling up from the corticosteroids I had to take between chemo sessions...

Jack Diaz4 said:It might be swelling because of some of the medications they're on. Honestly, my whole face used to swell up from the corticosteroids I was taking between chemo sessions

It feels like it could be related to the lymph nodes...

Is it Keytruda?
Has anyone else dealt with this or had any experience with it?

Paul Garcia said:It looks like it’s related to the lymph nodes...

Keytruda?

Does anyone have any actual experience with this?

If they're on corticosteroids like Medrol, it's probably a side effect from that.

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Angela Wright said:if they're on corticosteroid therapy like Medrol, it's probably because of that...

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He hasn't actually started the corticosteroids yet.
Today marks day seven of treatment, and man, those first three days were brutal... he was dealing with such intense lower back pain even while taking painkillers. Things are looking a little better now—the pain has dialed down a bit and the facial swelling has gone down too, though it’s not totally gone, and his neck is still pretty swollen. He keeps saying his throat feels tight, maybe from the lymph nodes, though they seem to have shrunk since a few days ago...
He just feels so weak, like he has absolutely zero energy left in him. Some days he'll feel okay and be a tiny bit more active—he managed to walk around a little more, bent over a couple times—but then today he’s just wiped out again. His breathing is heavy, like his lung capacity isn't quite there yet. On top of that, he can't sleep, which I guess is a side effect, and he has this occasional cough... and everything else...
Oh, and his capillaries burst on his upper chest area... we aren't really sure if that's from the heavy coughing and all the strain from before or something else entirely... honestly, I have a million questions swirling in my head...
He’s struggling, for sure... but compared to those first three days of treatment, he's doing much better right now.
I'm just relieved the facial swelling is easing up, so I try to stay positive and tell him things are moving in the right direction... but I'm still so terrified about what those initial test results might show...
I just really want to believe that miracles happen and that this new medication is going to be the miracle we need...
If anyone out there has any experience with Keytruda, I would be so incredibly grateful if you could reach out...
😢🙂