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

You hit the nail on the head. Everything just feels different without them around. My dad was such a firecracker, too, but then this illness just tore him apart in like two months flat. It sucks that we all have to deal with this crap, but like my friend always says—THAT'S JUST LIFE.

Linda Patel21 said:You put that very well. It really isn't the same without them. My father was such a vibrant person, too, but illness just completely leveled him in a matter of two months. I hate that we all have to endure this kind of thing, but as my friend always tells me—that's just life.

It’s hard to say which is worse: losing someone suddenly or watching them slowly fade away over two years, which is what happened with my mother. For the last week, I found myself praying to God to just take her so she wouldn't have to suffer anymore.
My dad passed before my mom, from a heart attack, and perhaps that was actually more humane; you're there one moment and gone the next, so you don't have to endure the long, drawn-out agony.
I still miss them, even though it's already been nine and six years.😢

John Foster38 As I was saying:
Zachary Howard2, I am genuinely relieved to hear that things have finally started looking up. It is honestly quite surreal when you think about it—that you actually had to step in and direct the doctors on how to handle his care. There is something deeply unsettling about the fact that a patient can be left entirely at the mercy of the system without someone stepping up to steer the ship. At this point, nothing else matters except his full recovery.🙂

As Jane pointed out, I’ve spent enough time navigating hospital corridors alongside my mother to know that a doctor's credentials don't mean a damn thing if they can't protect the life of someone close to them. If they lack the intuition to see exactly what needs to be done, then all those fancy titles are essentially worthless.

Hi everyone, I hope this is the right subforum to be posting in. If I’m in the wrong spot, please feel free to move this...
So, about three years ago, I had surgery on my ovary because of a cyst, and then went through six rounds of chemo. Things started getting difficult again about eight months ago when doctors found a nodule in my abdominal wall... they said it was caused by the previous laparoscopy. It was originally staged at stage one, but they had to switch from laparoscopy to an open laparotomy once they realized it was malignant.
Anyway, back to the point... the nodule was removed, but my PET scan shows infiltration along the abdominal and pelvic walls, including the iliacus muscle. They're suggesting I start chemo first. Honestly, I'm a total wreck mentally. I've seen several psychiatrists and psychologists, and I'm taking everything they've prescribed. Also, starting before the fifth round, I began running low-grade fevers around 99-100°F, but my oncologist isn't really concerned—saying it might just be my body fighting back? Does anyone have experience with these temperatures or doing chemo without surgery? In my head, it feels more logical to do the surgery first and then the chemo... but I don't know. Thanks for any insight, and please ask if I missed anything or wasn't clear. Best wishes.

Elizabeth Johnson13 said:Hi everyone, I hope this subforum is the right spot—if I’m wrong, feel free to move this...
Basically, three years ago I had surgery for ovarian cancer. A cyst was ruptured, and I went through six rounds of chemo. Things started getting messy about eight months ago when doctors found a nodule in my abdominal wall... they say it was caused by the laparoscopy. It was originally stage one, but they started with a laparoscopy, and once they realized it was malignant, they had to switch to an open laparotomy...
To get back to the point... the nodule was removed, but the PET scan shows infiltration along the abdominal and pelvic walls, and into the iliacus muscle... the recommendation is to start chemo first... mentally, I am completely falling apart. I’ve seen countless psychiatrists and psychologists, and I’m taking everything they’ve prescribed... also, since starting the fifth round, I’ve been running low-grade fevers around 99°F, but my oncologist isn't paying attention—is it just the body defending itself? Please, if anyone has experience with these temperatures or doing chemo without surgery, let me know. My only real hope feels like having the surgery followed by chemo... that seems logical to me... but this way, I just don't know... thanks for any answers, and please ask if I missed anything or if I wasn't clear. Best regards.

Hang in there, dear... I don't have much direct experience with ovarian cancer. Zachary Howard2 knows way more than I do, so I'm sure he'll chime in.
From what I understand, it's actually quite common for things to get complicated like this, and with many diagnoses, the protocol is to lead with chemo to try and shrink the metastases or at least pull them back partially, making the tumor much easier to remove later.
If I were you, I would absolutely seek a second opinion at an outside hospital or look into clinical trials. Given where you are in this process, I think you might be a strong candidate for a study.

You can find a page here with a map showing the number of active clinical trials in Europe. Just click on a country and it will list all the relevant studies for you.

Thanks for getting back to me so fast. I’ve been trying to get a few different opinions... Dr. Miller at Mayo Clinic, the specialists over at Johns Hopkins, even a clinic in Chicago... everyone is saying the exact same thing, including about the medication they suggested. My scans show some issues in the abdomen, some nodules, and my lungs... but everything else looks fine. No fluid buildup or anything. I guess I'm just terrified that I'll run out of time in a few months.... As for those clinical trials, do you just apply yourself? Or does it happen through an oncologist if you're already in treatment?
Thanks

Elizabeth Johnson13 said:Thanks for getting back to me so fast. I’ve been digging around for more perspectives—talked to specialists at Mayo Clinic, doctors over at Johns Hopkins, and even checked in with a gynecology clinic in Vienna—and honestly, everyone is saying the exact same thing, even regarding the medication options they suggested. My scans show everything from my abdomen to my lungs and lymph nodes looks clear; there isn't even any fluid buildup. Still, I can't shake this fear that I'm just running out of time over the next few months. Regarding clinical trials... do you just apply yourself? Or is it something handled through an oncologist if you're already undergoing treatment?
Thanks

You can either apply on your own or have your oncologist nominate you. Every single study has its own specific set of criteria you have to meet to be considered a viable candidate. Your best bet is to just send your medical records and inquiries to as many different sites and studies as possible that look promising, then wait to see what sticks.

Elizabeth Johnson13 said:Thanks for getting back to me so quickly. I’ve been trying to gather as many perspectives as possible... I spoke with Dr. Cepulic at the Mayo Clinic, Dr. Herman Haller at Johns Hopkins, and even consulted the gynecology department at Cleveland Clinic. They all seemed to be on the exact same page regarding the diagnosis and the suggested medications. As for my physical state, my abdomen, lymph nodes, and lungs all look clear—no free fluid detected. Still, I can't help but feel this creeping dread that I might just burn out in a few months. Regarding clinical trials... do you apply for those yourself while undergoing treatment, or is it something handled in coordination with the oncologists?
Thanks

First off, try not to spiral into that mindset about just "burning out." It won't help you right now. 😵

My mother’s situation was quite different because her diagnosis came relatively late (Stage III C), so her path always prioritized surgery followed by chemo (and again whenever a recurrence popped up). In her case, there was free fluid in the abdomen that doctors had to drain several times.

From what I recall, she didn't struggle with fevers, but it would probably be wise to have you checked out just to ensure there isn't an underlying infection or inflammation complicating things.
As Jane mentioned, sometimes it is actually more effective to wait until the primary targets have been cleared before moving forward with surgery.

I know I haven't provided much concrete guidance, but if you have any other questions, I am more than happy to share whatever insights I can from my experience looking after my mom.

Things are going okay here, I suppose, though my father-in-law’s recovery is moving at a snail's pace. He had several bouts of vomiting, but thankfully, that seems to have finally quieted down his constant coughing.
Yesterday, the orderlies served him some food that was far too seasoned, which he ended up throwing right back up, leaving him sounding quite hoarse afterward.
I actually had to step in and demand that the nursing staff be more careful about what they feed him—it's honestly exhausting having to micromanage every single detail just to get basic competence. They eventually admitted they’d given him something a bit too heavy for his system.
I realize most patients in this wing are dealing with pulmonary issues, but there are a few others here recovering from esophageal surgery, and clearly, the kitchen isn't tailoring meals specifically for those needs.

Today, the doctor told my husband that my father-in-law should be eating small, frequent meals rather than sitting down to one large one (of course, they failed to mention this much earlier)🙂.
On top of that, they pulled his drain out way too early. Since the wound hadn't drained properly, they had to shove it back in while he was wide awake, essentially poking and prodding at an already agonizing wound.
It’s enough to drive anyone to the brink of madness.
Naturally, my father-in-law is beyond irritated; he's angry, exhausted, and just counting the minutes until he can leave this place.
The doctor hasn't shared any specifics regarding the test results or the next steps in the treatment plan, apparently assuming we’ll just figure it all out ourselves. 🙄.
All they’ll say is that the whole process is starting to drag on a bit.

Thanks, Zachary Howard2...
The thing is, even though I stay pretty informed, I’d never heard anything about my specific situation before. My abdomen itself looks fine, but there are infiltrates in the wall... basically, what lines the belly and pelvic area. There was one lump right under the incision that they biopsied immediately, and the results showed connective tissue. So how does a scan five months later show something completely different? If someone told me that, I wouldn't know what to think. Everyone is on the same page about going with more aggressive chemo—Adriamycin, cisplatin, Taxol...
But I don't have much of a choice...
My doctors told me straight away that the cells were already seeded into the wall during that first surgery, right where the trocar passed through... and that's where things are getting messy.
Wishing you all so much luck with your treatments. Stay strong. Best,

Does anyone know if it’s actually normal for my father-in-law to vomit every single time he eats? My student, who's currently in med school, mentioned that this is a common symptom following esophageal surgery, but honestly, this has been dragging on for far too long. Today, they had him on an IV antibiotic drip and ended up performing a transfusion with five units of blood. Is it possible he picked up some kind of bacterial infection? As for the doctor, well, getting any actual information out of them is like pulling teeth—they won't give me a straight answer to save their lives.

Amanda Miller69 said:Does anyone know if it's normal for my father-in-law to vomit every time he eats? A medical student I know mentioned that vomiting is a common symptom after esophageal surgery, but this has been going on way too long. Today they were giving him an IV antibiotic and had to perform a transfusion with five units of blood. Is it possible he picked up some kind of bacterial infection? As for the doctors, honestly, you can't get a straight answer out of them for anything—getting any actual information is impossible.

From what I understand, yes, though I have no clue how long it takes to stabilize. Since they reconstructed his esophagus using part of his stomach, they likely removed the sphincter as well. There's a shorter path to the mouth now, which is probably why he's throwing up... I really don't know for sure. One thing is certain: he definitely needs to be eating smaller, more frequent meals...
As for bacteria, of course that’s a possibility in a hospital setting, but that would almost certainly show up as a fever or through specific markers in his blood work...
I am so sorry to hear this 😢 Can't you use your connection to the nursing staff to dig up some better information?

Angela Wright said:From what I can gather, it is, though I have no idea how much time it takes for things to stabilize. They reconstructed part of his stomach, and they likely removed the sphincter as well; since the path to the mouth is shorter now, that’s probably why he’s vomiting... honestly, I can't say for sure. It's a given that he should be eating smaller, more frequent meals...
As for bacteria, of course, an infection like that could happen in a hospital setting, but it would almost certainly show up as a fever or via certain markers in his blood work...
I feel so terribly for him. 😢 Can't your contact help you get some actual, concrete information?

Both my contact and his doctor are being completely useless. I managed to corner a nurse today, and she told me to call back around 2:00 PM once she catches the attending physician who took over his case. She was huddled in the nurses' station talking to someone else, but she won't tell me a thing and is playing this mysterious act. She just says, "You know we're looking after him, it's not like we aren't doing anything." I didn't even imply that—I just want to know what is actually going on.
They are running another X-ray today to see where the food transit is getting blocked.

Amanda Anderson87 said:Evelina, unfortunately, we all know exactly what you're going through right now. Sending you guys so much strength during this fight. 🙂

A little update on our situation. After almost a two-month break due to kidney failure, Dad started back on the xeloda therapy. It’s probably the only thing that makes sense given the metastases and his overall condition. But even this time, it wasn't a long-lasting victory because after just seven days, his kidneys started failing him again. This time, when we got to the ER, they didn't even bother asking if we wanted him admitted; they just moved him straight to the GI intensive care unit. He spent three days there without getting out of bed, barely eating, just lying there naked watching people die around him. Since he isn't receiving any treatment that can't be managed at home, we brought him back.

Basically, we're managing the intense pain—which was part of the reason he was hospitalized—with Voltaren injections. For most of the day, Dad is pain-free and completely present 😍 walking around a bit, having a good appetite, we talk, we laugh. He's even planning to go fishing with my husband one day. 😍

While he was in the hospital, they did an ultrasound that showed necrosis in the liver and a new tumor the size of a hand on the peritoneum. He isn't sure if he wants to continue with the xeloda anymore; before the first cycle, he didn't have any pain, but during the second cycle, the pain became unbearable. Given how the tumor is growing, the drug doesn't seem to be doing anything, and he sees no point in continuing this torture. I honestly don't know what to think. 🙂

So, that's where things stand. We have a follow-up appointment with the oncologist next week, so we'll see.

Carl Kern66 how are things looking on your end? How much xeloda was he prescribed? How long is the cycle? Is that the number of days in a row he has to take the pills, then a break, then the next cycle, or what?
We started the xeloda tablets yesterday just to maintain his condition... god, that sounds so pathetic.

How is it going with you? What are the doctors saying? Are you still tapering off and preparing for surgery, or...?

cosmiclynx14 said:Carl Kern66 how's everything looking on your end? How much xeloda did they prescribe him? And what’s the cycle look like? Like, how many days in a row does he have to take the pills before taking a break, then starting the next round, or what?
We actually started the xeloda tablets yesterday just to try and maintain things... god, even saying it out loud sounds so pathetic..

How about you guys? What are the doctors saying? Are you still tapering off or getting ready for surgery or what?

Things aren't going great here. I took him to see his oncologist last week because of those (bad) test results, and she isn't extending the xeloda. Honestly, she isn't being very optimistic, but then again, none of the doctors have been optimistic from the start. I'm heading back on July 23rd with the new results, so we'll see.

Dad spends most of his time in bed; he's in pain and just incredibly weak. He can barely make it to the bathroom, which is luckily right in his room, just a few feet from the bed. Sometimes I clean up his bedside table, sometimes my mom helps him out. He eats, but we practically have to force him to take two meals and some puree. He'll pick at some fruit, ice cream, or maybe a dessert if I manage to whip something up.

Basically, we're in a really dark place right now. The thing with my dad is that it was bad from day one, and he's been on this attempt at maintenance with xeloda since the beginning, but it just isn't working for him.

Since the diagnosis, we've gone out and hunted down four different opinions across three different states. And all four were identical, unfortunately. Bad prognosis, xeloda maintenance as the only option, and inoperable.

The first time around, they prescribed him 2x3 xelode 14 days with a one-week break. The second time was 1x3 and 1x2, also 14 days on and a week off. He only made it through seven days of that before ending up in the ICU.

How is your dad handling the xeloda? Has his spirit lifted at all? Is he still doing okay physically? I know you mentioned before that he's still doing everything he used to, just getting tired easily.

Sending you so much strength and patience, and to everyone else fighting for themselves or their loved ones 🙂

We finally cracked the mystery behind my father-in-law’s constant vomiting; apparently, he developed a muscle spasm near his duodenum following his surgery, which ended up blocking his food passage entirely.
They performed a gastroscopy today to get things sorted out. Now he’s dealing with some bouts of diarrhea, but hopefully, that’s just a temporary setback. It feels like it's always one thing after another; you can never catch a break where everything actually goes according to plan.

inra, I am so incredibly sorry. I’m praying to God for some kind of miracle here... is he still taking that beta-glucan or anything else for his immune system?

I asked him today if he was feeling any side effects—you know, nausea, loss of appetite... and he just laughs and says he feels nothing. Well, clearly, there is no appetite.

And yeah, I’ve noticed he’s scaled back his responsibilities quite a bit. He spends most of his time resting at home, maybe heading out for a little walk on the hills in the afternoon. He handles the essentials, but I do everything else. Still, I’m relieved he finally understands that he actually *has* to rest..

Honestly, I don't even know. All things considered, it's a miracle how much he's able to take.

He mentioned today that he heard rumors about a new hospital opening up in Salzburg—he wasn't sure if it's experimental or what, but apparently, it specializes in intestinal issues. Does anyone know anything about this?? Angela Wright, maybe you've heard something??

cosmiclynx14 said:inra I feel terrible about this. I’m praying to God for some kind of miracle here... is he still taking beta-glucan or any other immune support?

I asked him today if he was feeling any side effects—you know, checking for things like nausea or whether his appetite had tanked—and he just laughs in my face and says he feels fine. Well, clearly, that means he’s got zero appetite.

Yeah, I noticed she’s scaled back her workload herself, so most of her time is spent just relaxing at home or heading out for a little walk in the hills in the afternoon. She handles all the heavy lifting and essential tasks on her own, but honestly? I’m just glad she’s finally realizing that she actually needs to rest.

I honestly don't know—it’s nothing short of a miracle how he manages to stomach all of this.

So, someone mentioned to me today that they heard rumors about some new medical facility opening up over in Salzburg—some kind of experimental setup specifically focused on intestinal health or something along those lines. They weren't exactly sure if it's a full-scale hospital or just some cutting-edge research site, but the details were pretty fuzzy. Does anyone here actually know what's going on with that? Angela Wright Maybe you’ve heard the news?

Give me some more details. I’m going to run this by someone who knows exactly what’s what and can tell us if it's actually worth our time.

Hey everyone,
I just wanted to say thanks for all the posts, the constant help you give one another, and every kind word or bit of support shared here.
Every now and then, I find myself drifting through this forum, picking up a little advice and maybe trying it out myself.
I’ll admit, I can be pretty lazy and stubborn, and I probably should be doing more to look into alternative treatments or supplements, but honestly, fighting liposarcoma for seven years straight has just worn me down.
Regardless, the way you all care for each other is a huge deal—it feels like it heals just as much as any of the actual medications.
Anyway, thanks for being there.

Angela Wright said:Give me some more details. I'm going to check with someone who knows for certain if this is actually worth anything.

Look, honestly, I don't know much else beyond the fact that it's in Cleveland and there's a chance it's an experimental facility—specializing in intestinal issues—and apparently some big-name gastroenterologist works there..

I tried Googling every way possible, but absolutely nothing comes up. All I found was some Mayo Clinic in Cleveland, and even then, I'm not entirely sure if that's the right place..

That’s why I’m asking here; maybe someone has heard more about it..
My dad told his friend who mentioned this to look into it a bit deeper if he could, so now we're just waiting..

James Patel79 7 years?? Wow. Do you realize how much strength you have inside you without even noticing it?? Don't let up now, just like you haven't until this point... it looks to me like you have an incredibly resilient psyche if you don't even need an alternative treatment yet. It's obvious you're a strong person, a real fighter.. and the strongest ones get the most exhausted, but they always pick themselves up and keep moving forward!!

I am wishing you all the strength in the world for what's ahead, as well as to everyone else out there fighting their own battles..