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

The Bauerfeind Sen standard plus Air Large adult diapers are actually really high quality. Starting back in March of last year, I’d just email my doctor every three months to request an electronic prescription. I didn't have to go anywhere in person; they’d open the email immediately and send the order straight to General Electric, so the diapers and pads would usually arrive at our home by the very next day. It used to be such a hassle having to physically visit the doctor just to get a script, but this electronic system makes things so much easier. If you're caring for someone who can't move, just remember—no one is going to change them as often as you will. I spent so many nights changing my parents. There were times I had to strip the bedsheets for Dad in the middle of the night. I was doing it all on my own, and honestly, it just exhausts you. It wears you down. The stress is massive, but I guess when you know a bedridden patient is relying entirely on you, there isn't really any other choice.

There is also that Cicradina hyaluronic cream, but it didn't really do much for my dad's surface skin damage, I guess. He actually found the Bepanthen lanolin cream from the pharmacy much more effective. Or even that Hippov lanolin cream in the tube with the green cap you find at Muller or the local Drugstore—that stuff was great for minor skin irritations and small wounds. You have to be careful with those dressings, though. They just didn't work for him; his skin couldn't breathe under them. The Granuflex extra thin kind wrinkled up immediately, and honestly, Granuflex hasn't been great for him lately... maybe because his skin has just become so much thinner as he's aged. You really have to watch when you peel off Granuflex so it doesn't tear the skin. In my opinion, Mepilex border light is a lot better since it's thinner. For a little while, it worked well for him and actually helped heal small wounds by encouraging skin regrowth. But eventually, it started peeling off, so I stopped using it. Plus, it was just awkward because of how he had to sit in his chair. It was never hard for me to take care of Dad, really. Changing him was just part of the routine, especially since he was bedridden for six years. I couldn't exactly rely on anyone else to come over and help if I needed something, so I just managed on my own. It was much easier with my mom; she didn't need any dressings at all, and she was much younger, able to turn herself around easily. I didn't even need a hospital bed for her. It was easier because Dad helped me out so much. Mom never spent a single day in a nursing home.

Dad really liked taking effervescent magnesium and potassium supplements, and his potassium levels always stayed within the normal range. So, I didn't bother giving him Calinor at home. He also enjoyed drinking mineral water and rosehip tea from Spar. Of course, that was back when he could still swallow easily. Eating became much harder after that. Usually, he’d have polenta with ground meat, eggs, or maybe some scrambled eggs—I’d finely chop up boiled chicken soup for him. He also ate cheese, pudding, and yogurt; I made sure it was always thick yogurt since swallowing was getting tougher. Sometimes he'd have a zucchini casserole from the oven. On days when I was just completely exhausted, I’d order takeout, though I always tried to make sure it was fresh. Occasionally, I’d make spinach in milk, and he really loved nectarines. The local farmer's market was too far away, so that wasn't really an option. Otherwise, I would give him fish, although I suspect fish is much fresher by the coast. He also enjoyed store-bought treats or muffins I’d bake from a box.

The weaker Voltaren gel actually worked wonders for me—I used it on his back before getting him settled into the stroller, since he’s been having such a hard time sitting upright lately. He’s just so stiff. I guess if anyone else out there needs some advice regarding a bedbound patient, I’d be more than happy to help.

Rebecca Alvarez86 said:Sending support and strength to everyone out there..

I’m looking for some insight regarding someone refusing monotherapy after a glioblastoma diagnosis. They were supposed to undergo a cycle consisting of 5 days of Temodal followed by a 23-day break. However, after just one day, they’ve decided to stop because the vomiting and side effects are just too much to handle. Currently, they have lost control over their right arm and leg and are essentially bedridden.

Should we be bracing ourselves for a sudden decline?

Generally speaking, the disease progresses steadily. At least, that was the trajectory with my mother. For her, the decline really accelerated after her final dose of Temodal. It started with her legs giving out, then moved to her arms, until she eventually became completely paralyzed from the head down. Swallowing was the only thing she could still manage.
Do everything in your power to ensure they receive proper palliative care.

I reached out to palliative care at the beginning of summer because Dad was struggling to swallow liquids, yogurt, or anything soft. But all they did was call in home health services, and he only received an IV drip for two days. It’s like once you set up the IV, they just disappear. There aren't enough staff members, and I guess during the summer, they have to cover such a massive territory. I don't understand why the home health nurse didn't just come first thing in the morning to administer the infusion—she's a head nurse, for heaven's sake, she writes about infants! She literally knew nothing about wound dressings, either. She would show up with this junior nurse who, honestly, eventually admitted to me that she had absolutely no clue how to handle the dressings; she was just acting important in front of the supervisor. Generally speaking, there seems to be so much medical incompetence around here. It feels like nurses who actually know what they're doing are a rarity. I honestly don't get what they're learning during their clinical rotations. Not a single nurse I encountered actually knew how to insert a new nasogastric tube; when you call the hospital to ask for help, they basically tell you that it’s something that has to be handled at the nursing home. In the end, Dad went into a skilled nursing facility because I was just too terrified that I wouldn't know how to manage that tube myself.

I wouldn't set my hopes too high when it comes to palliative care. Honestly, during the summer, they all seem to go on vacation. I mean, they did try to help me out by calling in home health services, because my dad’s primary care doctor told me they just don't provide IV infusions through home care. Also, while Dad was at home, I really didn't want him being right next to someone who had been vaccinated. The home health nurse was obviously vaccinated—I could tell by her swollen arm—but luckily, most of the other home health workers weren't. I was actually surprised by how much sense one younger nurse made, though; she was maybe 20, also finishing nursing school, but she hadn't been vaccinated herself and she actually wanted to help me get Dad settled. Then there was this other problematic nurse who, of course, had been vaccinated; she seemed to think she had some kind of special status just because she was vaccinated, even though she didn't actually want to do any work. Nobody really monitors those home health people, but still, most of them kept trying to help me move Dad. I didn't ask for that, either. I was mostly trying to make sure they didn't stay at our house for too long.

I

My mother, who was born in 1952, underwent surgery for bile duct cancer about two years ago.
She didn't undergo any chemotherapy following the procedure.
Everything has seemed to be going quite well up to this point...

About a month ago, she started experiencing pain in her lower abdomen, though both an ultrasound and an X-ray came back clear.
It turns out she has a severe bladder infection caused by E. coli, so she’s currently on a course of antibiotics.
The pain is relatively mild when she's lying down, especially with painkillers, but once she stands up, it becomes almost unbearable. She's still finishing her antibiotics, which have helped things improve just a little bit...

She also had some tumor markers tested, and unfortunately, the results aren't looking great:
Carcinoembryonic antigen 1.9 (0-3)
Carbohydrate antigen 19-9 104 (0-35)
CYFRA 21-1 13.29 (up to 2.08)

I was wondering if anyone might be able to offer some insight or help explain what these elevated marker levels could mean...

Thank you so much in advance for any help you can provide.

Larry Ramirez10 said:My mother (born in 1952) underwent surgery for bile duct/liver cancer about two years ago.
She didn't undergo chemotherapy following the procedure.
Everything has been looking good up until now.

About a month ago, she started feeling pain in her lower abdomen. An ultrasound didn't show anything, and neither did an X-ray.
It turns out she was diagnosed with a severe bladder infection; they found E. coli in her urine, so she’s currently on antibiotics.
The pain is mild or manageable with painkillers while she's lying down, but the moment she stands up, the pain becomes unbearable. She is still taking the antibiotics, which have helped improve things just a little bit.

She also had her tumor markers checked, and the results aren't great:
Carcinoembryonic antigen 1.9 (0-3)
Carbohydrate antigen 19-9 104 (0-35)
CYFRA 21-1 13.29 (up to 2.08)

I would appreciate some insight from anyone who can help explain what these elevated marker levels might mean.

Thanks in advance for any answers.

I’d recommend repeating the tumor marker tests in a month. If there is a further increase—especially with the CA 19-9—further diagnostic imaging, such as a CT scan, will be necessary. Wishing you the best.

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oncology.net - Anova Clinic

crimsoncanyon3 said:I would suggest repeating the tumor marker tests in about a month... if there is any further increase, particularly with CA19-9, we will likely need to move forward with more diagnostic imaging like a CT scan. Wishing you all the best...

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oncology.net - Anova Clinic

Thank you.

Angela Wright said:For all types of sarcomas, surgical removal is really the best way to go—whenever and wherever it's possible.
If you're looking for the top sarcoma specialist in Europe, Dr. Casali in Milan is the guy. It’s probably best to reach out to him as soon as you can.
https://www.medifind.com/doctors/pao...asali/17903153

When it comes to rib sarcomas, Herceg and Šantek are the big names to know. I'd say Šantek is a bit easier to talk to, though; he's very open when it comes to discussing different clinical trials.

Thanks for getting back to me! I thought I’d get an email notification when there was a reply, so sorry for the delay.
A friend of mine actually went to a private clinic in Vienna after they first made contact. They ended up starting the first round of chemo there because the doctors felt they couldn't wait—they wanted to jump on treatment immediately, even before he had finished his PhD. It seemed a little unusual to everyone, but the family agreed, probably out of fear or just wanting to take action. Dr. Simetić was kept in the loop on everything. Now that he's finished his PhD back in New York, he’ll be continuing the remaining chemo cycles there. It seems like they decided surgery wasn't an option right now, maybe due to metastasis?
Anyway, Dr. Herceg is familiar with the case, but Dr. Simetić is still the main one handling everything. They were told that they work closely together, so hopefully, he's in good hands.

Elizabeth Perez76 said:Thanks for getting back to me! I actually thought I’d get an email notification once there was a reply, which is why I’m running a bit behind on this one.

A friend of mine was in Vienna at a private clinic—the first place they reached out to—and he actually started his first round of chemo there. They felt strongly that treatment couldn't wait, even before he had finished his PhD. It seemed a bit unconventional to everyone watching, but the family agreed, likely driven by fear or just that desperate need to take action immediately. Dr. Simetić has been kept in the loop on everything, and since he’s since completed his PhD back in New York (with the Ewing sarcoma confirmed), he’ll be finishing up the remaining chemo cycles there. It sounds like they’ve determined that surgical removal isn't an option right now, probably due to metastasis.

Dr. Herceg is familiar with the case, but Dr. Simetić is still heading up the treatment. They were assured that the two doctors are working in close coordination, so the patient is in good hands.

The goal is to shrink the primary tumor through therapy, making it much easier to remove surgically later on. That’s likely the reason.

Hey everyone,
My father-in-law was just diagnosed with metastatic colon cancer, and it's spread to his liver. It seems like things are progressing pretty quickly because his markers have spiked, so we're just waiting on the CT scan results to confirm everything. Regardless of what the scan shows, he’s been running a fever up to 100.4°F for over ten days now. We tried antibiotics, but they didn't seem to touch it, and he's already dropped about 11 pounds in a single week. He isn't a candidate for Megostat since he's dealt with issues from the CDC before, and the doctors haven't really offered any other alternatives yet. Right now, he's just stuck at home fighting this fever, and they won't let him start chemo until his temperature settles down. If anyone has been through something similar, I’d really appreciate some advice.

Thanks!

Angela Wright said:The primary tumor usually shrinks during therapy, which makes it much easier to surgically remove later on. That could definitely be the reason.

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That’s what we’re all praying for! The extra layer of worry is the metastases in the spine. I actually remember reading about a case involving Ewing sarcoma where those retreated too after they did the neoadjuvant chemo.

Elizabeth Perez76 said:We’re all pulling for that outcome! Another complication is the spinal metastases. Has anyone heard of an Ewing sarcoma case where those actually receded after neoadjuvant chemotherapy?

Bone metastases are typically handled with radiation, and honestly, it works quite well. They aren't usually the primary cause of mortality.
Generally speaking, sarcomas are incredibly rare and notoriously difficult once they start metastasizing. The gold standard is always surgical removal—getting everything out. Anything else is essentially just a tactical attempt to extend quality of life. That doesn't mean people don't pull through these situations, though. Personally, I don't know any survivors because this is such a rare diagnosis and we're living in a relatively small part of the country. You'll have better luck finding success stories online.

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Hello,

My mother-in-law has metastases and finished her first round of chemo a week ago. Even before treatment started, she was struggling physically and mentally, spending most of her time bedridden. Since the chemo, things have taken a turn for the worse.

Our biggest concern—and we're feeling pretty helpless here—is that she hasn't wanted to eat for three days. If she does eat anything at all, it’s minimal, like half a banana or two spoonfuls of soup over the entire day. She's also refusing to bathe.

Has anyone else dealt with this? If you have any practical advice, I'd appreciate it.

Her doctor mentioned sending a home psychological team, but who knows how long that will actually take...

My mom passed away in my arms back on November 25th after battling cancer. Honestly, I’m still struggling to wrap my head around how things moved so fast—we went from a diagnosis to losing her in less than a month... It’s just surreal. I keep catching myself thinking she just stepped out somewhere, like she’ll be walking back through the door any minute now...

Hey everyone, if you’ve had family members deal with stomach cancer, could you please reach out and share what you went through? I’m honestly feeling pretty hopeless right now... Any info or advice at all would mean the world to me.

Morgan Wilson8 said:Please, if anyone here has family members who have dealt with stomach cancer, reach out and share your experiences. I am feeling quite desperate... Any information would be appreciated.

Was the individual a smoker?
How old were they?

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boldmarlin32 said:Was the patient ever a smoker?
How old are they?

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Never touched a cigarette in his life. He's 57.