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

Does anyone here have experience dealing with constant choking during meals when dealing with lung cancer?
Should I be looking into switching to an all-pureed diet?
Thanks

Mixing stuff up or relying on shakes won't really cut it because, at the end of the day, food still has to travel down your esophagus, you know?
Maybe try some soup instead, but you’ve gotta take it slow—like, painfully slow. Just swallow a little bit and then actually wait a decent amount of time before moving on. I know it’s a total pain in the neck, believe me, but just stick with it.

"I waited almost an entire year, and then the specialist asked me why I didn't push harder. But honestly, at the time, I was barely able to move. Still, looking back, having that positive result felt like a win for me."

😠😲That sounds awful... 😢 (Chicago??)

Yeah, Chicago. Since my case was approved, the remaining funds finally hit my account. Now, once those social workers officially become "public officials," I won't think twice about filing criminal complaints against the staff at the Center for dragging their feet on these cases.

Hello,

Does anyone here have experience with "transferring" radiation therapy from one city to another? My mother-in-law just finished 25 sessions of radiation in Indianapolis for breast cancer, and we were wondering if we could bring her to Chicago to continue her treatment here. Is that even possible? If so, what are the requirements, and does anyone happen to know what the typical wait time is to start these treatments in Chicago? In Indianapolis, she’d be looking at at least a three-month wait just to get started.

Thanks so much for any helpful information you can share! 🙂

Hello,

Does anyone here have experience with "transferring" radiation therapy from one city to another? My mother-in-law just finished 25 sessions of radiation in Indianapolis for breast cancer, and we were thinking about having her come to Chicago to finish up her treatment here instead. Is that even possible? If so, what are the requirements, and does anyone happen to know what the typical wait time is to start those treatments here in Chicago? In Indianapolis, she'd be looking at waiting at least three months just to get started.

Many thanks for any verified information you can share! 🙂

Hey everyone.
I'm asking for a friend, 28 years old. Six months ago, he was diagnosed with a malignant testicular tumor that had already spread to his lymph nodes and spleen. He went through several rounds of chemotherapy, but nothing worked. After that, they sent a tissue sample to another hospital, and the pathology report came back saying it’s an unidentified malignant sarcoma-type tumor. He's home now, starting to feel a lot of pain, and nobody is giving him any straight answers. It's a brutal situation, especially since he's got two little kids depending on him to provide for the family. Mentally, he's just hitting rock bottom. I'm trying to wrap my head around what this kind of finding actually means—is it definitely a sarcoma?
Has anyone here dealt with anything similar?

Hi everyone,
A long time ago, I was lurking around this forum and saw this thread. I didn't have the guts to actually open it back then; I just sort of thought to myself that I hoped I’d never have to be here... Unfortunately, that's not how it turned out. I've been reading through your experiences, and as much as it breaks my heart to see what you've all gone through or are currently facing, it’s also kind of a relief to know there’s a group of people out there who actually understand and help such complete strangers so selflessly. I’ve just been feeling totally lost in all of this, and it was honestly comforting to find a place where you can vent a little and maybe get some advice. I really admire your willingness to understand and help—seriously, props to you. Even those of you who lost the battle are still here, and you deserve respect, though I guess "respect" feels like an understatement. About two weeks ago, my dad was diagnosed with stomach cancer with liver metastases, and he had surgery last week. Despite the doctors' best efforts, they couldn't save any part of his stomach; the tumor was positioned in a way that the whole thing had to come out. I won't forget the moment we found out or that conversation with the doctor as long as I live. Given all his other diagnoses, the statistics are pretty grim. Surprisingly, the surgery itself went without complications. There weren't any major postoperative issues, aside from a psychological reaction to the anesthesia, which manifested as intense anger and him claiming he wasn't going to survive. They explained to us that this is expected given his age (68), and they tried to comfort us, saying we shouldn't take it personally and that he'll eventually forget it. He mentioned that if he had known it would be like this (since he hadn't eaten for seven days), he never would have agreed to it. He felt terrible and weak—he even managed to fall while working with the physical therapists. It was incredibly hard for him to deal with that weakness and the back pain from getting an epidural and everything. But anyway, they did some tests yesterday that confirmed everything went well, and he can slowly start having tea and gradually reintroduce food. When I asked the doctor to be brutally honest, he told us first that there was a high chance he wouldn't survive the surgery (he has diabetes with vascular complications that led to half a foot being amputated over two years ago, plus rheumatoid arthritis, atherosclerosis, high blood pressure, etc.), and even if he gets through that, there’s a huge risk of postoperative complications. Yet, the surgery went perfectly, and thank God, the doctors say his recovery is exceeding expectations. From what I gather, the biggest challenge will be getting him strong enough to handle chemotherapy. I haven't seen all the paperwork yet, but when I asked about the liver, the answer was "a lot" and it isn't operable. As much as I try to pull myself together, I still feel completely out of my depth and honestly don't know where to start. I am in a total emotional whirlwind—swinging from suffocating sadness to paralyzing fear, then hitting bursts of optimism, and then finding solace in prayer as a believer. My sleep is basically zero, so I've started taking some pills; it's just a daily struggle with myself. Although I've had some positive experiences with alternative methods (I know that's not the topic here), I have no intention of rejecting anything within the scope of modern medicine, nor do I have the nerve to do anything on my own. Since I have a lot of people in my circle with heavy diagnoses, I hear all sorts of things, and it’s just total chaos in my head. I tried to hold onto the idea that since he's in the hospital, I can't really do anything anyway, but despite the bad stats, I want to try everything possible to give him more days, even though I dread the potential suffering. I was already falling apart before he couldn't even eat or drink, but somehow I managed to stay composed when I was with him. Though, I have to admit, the first day at the ward put me through the wringer—both me and the doctor—wondering why I brought him to this hospital and all that. The nurses were wonderful (as was the doctor who came by immediately), they explained everything and gave him some sedatives. We only found out later that after our visit to the ICU, they actually had to restrain him because he was pulling at everything. But okay, that's mostly behind us now; yesterday helped a lot, and he's starting to come around. If you have any advice on where to even begin, I would be seriously grateful. I wish you all strength and blessings, because what you do here is truly wonderful, no matter how scary the topics are. I scrolled down to the alternative section for a bit and was horrified by the amount of arguing and bickering; it just made me even sadder. But whatever, that's not the point here. Thanks so much everyone, and I wish you all success in your battles!!

amberfox67, first things first—let’s just focus on getting your dad through his recovery from surgery properly,
and then you can figure out the next steps once the dust settles.
Look, recovering without a stomach is definitely a bit more of an uphill battle, but it’s by no means impossible.
My husband bounced back incredibly fast, even though they had to remove his stomach, gallbladder, spleen,
and a good chunk of his intestines... let’s just say he was out of the hospital after about 10-12 days.
Truth be told, he was in really great physical shape before the surgery, which made all the difference in his recovery,
plus he was a fighter himself—he refused to just lie there like a helpless patient unless he absolutely had to.
And hey, if you're worried about him being able to eat—don't be. Not having a stomach doesn't mean he won't eat.
Modern surgery is honestly phenomenal; they basically reconstruct things so that he’ll be eating just like I do,
you'll just need to stick to smaller, more frequent meals at first, and a huge tip: chewing is everything.
Also, remember not to drink liquids right after eating, and if he needs to lie down, keep him on his left side with his head elevated.
Oh, and moving around as much as possible is super important.
In our experience, the post-op recovery was fantastic, though chemo is a whole different animal entirely.
I'm writing this from the perspective of someone who went through this eight years ago, so I'm sure medical science has advanced significantly since then.

Just arm yourself with plenty of patience, hang in there, and best of luck!

amberfox67, first things first—let’s just focus on getting your dad through his recovery from surgery,
and then you can figure out the next steps once the dust settles.
Recovering without a stomach is definitely a bit more of an uphill battle, but it's certainly not impossible.
My husband bounced back incredibly fast, even though they had to take out his stomach, gallbladder, spleen,
and a good chunk of his intestines... let's just say he was out of the hospital in about 10-12 days.
To be honest, he was in really great physical shape before the surgery, which made all the difference in his recovery,
plus he was a fighter—he absolutely refused to just lie there being a "bedridden patient" if he didn't have to.
And hey, don't let the idea of him not having a stomach scare you; it doesn't mean he won't be able to eat.
Modern surgery is honestly phenomenal—they basically reconstruct things so that he'll be eating everything I eat,
it's just that in the beginning, you'll need to do smaller, more frequent meals, and oh my god, chewing is absolutely critical.
You also have to make sure he isn't drinking liquids right after a meal, and if he needs to lie down, he should stay on his left side with his head propped up.
Also, moving around as much as possible is huge.
In our experience, the post-op recovery was fantastic, though the chemo is a whole different ballgame.
I'm writing this from the perspective of someone who went through this eight years ago, so I'm sure medical tech has advanced a ton since then.

Just gear up with some patience, hang in there, and good luck!

Paul Palmer2 said:Hi everyone.

I'm asking for a friend who is 28. Six months ago, he was diagnosed with malignant testicular cancer that had already spread to his lymph nodes and spleen. He went through several rounds of chemotherapy, but nothing worked. After that, they sent a tissue sample to another hospital, and the pathology report came back as an unidentified malignant sarcoma-type tumor. The guy is home now, starting to feel pain, and nobody is giving him any straight answers. It’s a brutal situation, especially since he’s got two little kids and he's the sole provider for the family. His mental state has completely tanked. I want to know what this kind of finding actually means—is it definitely a sarcoma?

Has anyone dealt with something similar?

He really needs to redo the pathology analysis with a new biopsy sample.
Sarcomas originate in the connective tissue; they are rare malignant diseases, and treatment options are pretty limited. Basically, you surgically remove whatever can be removed, then use radiation for the rest, and if there happens to be a specific targeted therapy for that particular type of sarcoma, you go that route.
In America, there are only a couple of doctors who truly specialize in sarcomas (like Dr. Smith or Duke). It might be worth looking into getting him treated abroad, perhaps seeing Dr. Casali in Italy.
https://www.ecco-org.eu/OldPolicy/EC...t/Paolo-Casali

Paul Palmer2 said:Hey everyone.
I'm asking for a friend who's 28. About 6 months ago, he was diagnosed with malignant testicular cancer that had already spread to his lymph nodes and spleen. He went through several rounds of chemo, but—honestly?—it didn't do a thing. After that, they sent a tissue sample over to another hospital, and the pathology report came back saying it's an unidentified malignant tumor, specifically a sarcoma type. The guy is home right now, starting to feel some pain, and nobody is giving him any straight answers. It’s just a brutal situation, especially since he’s got two little kids and he's the one providing for the whole family. His mental state has absolutely tanked. I'm trying to wrap my head around what this kind of finding actually means—is it definitely a sarcoma?
Has anyone dealt with something similar?

Shoot me a PM!

Hey everyone, I’m really hoping someone can help me out here...
My mom was diagnosed back in August with cancer in her right bronchus, which has already spread to both lung fields and her pelvis. Her latest results show this:
Chest X-ray: Compared to previous imaging of the thoracic organs, the tumor mass near the lower part of the right hilum shows no significant change. However, there is a newly developed pleural effusion on the right side. The rest of the status remains unchanged.
Pelvic X-ray: On the follow-up imaging of the pelvis and hips, there is progression of extensive osteolytic secondary lesions in the right iliac bone wing, resulting in a pathological fracture of the bone. Discrete zones of bone thinning in the intertrochanteric region of the right femur are also suspicious for secondary Zarist...

She’s just finished her third cycle of pemetrexed and cisplatin, and she’s been given Zometa. I know deep down the prognosis is a total disaster, and honestly, the worst part is seeing how she can't move normally anymore... it just makes everything so incredibly difficult. We have a pretty terrible oncologist, and if I could, I’d switch doctors in a heartbeat, but at the hospital we’re at, there’s only one specialist available. I feel like we need to change the chemo because this stuff isn't doing anything, though I can't help but wonder if they're just giving it to her now just to say they did something...

Is there anyone here who could explain this pelvic worsening to me in plain English? There are so many medical terms I just don't understand... We were told that bone metastases can sometimes be kept under control, but they went ahead and performed palliative radiation on her pelvis in September, and then this sudden decline happened. They mentioned that if we could target the primary cancer with effective therapy, we might be able to keep things steady—and if we could succeed with more radiation—but for now, radiating the lungs isn't an option. When I read these prognoses, it feels like there's not even a 1% chance of survival over the next five years... I just can't wrap my head around it. We spent all this time hoping, just constantly hoping, and now that they're telling us the chemo hasn't had any reaction, it feels like a slap in the face. I don't know... I guess I'm just writing this all out to try and make myself feel a little better, but I don't know... I just don't know...

Maria Miller80, thanks so much for the reply...
I haven't been on the forum for a while. My dad passed away, unfortunately...
Everything was going fine post-op, and he was actually getting ready to be discharged from the hospital when everything just flipped. He went septic, and they tried everything, but his organs just started shutting down one by one... We were right there with him until the very end; the doctors let us stay. The suffering didn't last long, which is the only thing we can try to find comfort in, though I don't know how much that actually helps. I tried to hold it together, but then my mom suffered a stroke three days after my father died—just a day before the funeral. Thank God and thank the doctors at the new hospital, because she’s doing okay now, physically at least... As for me, I’m basically a zombie right now, just moving on autopilot... I know many of you here have gone through this, and honestly, sometimes it feels like I won't make it through, but then I tell myself time will take its course, and it's just that cycle. To everyone still fighting, I truly wish you success from the bottom of my heart, and to those of you helping others with advice, may life reward you for what you do.

amberfox67, I am so incredibly sorry about your dad...
That surgery is just brutal enough on its own—and that's without having to deal with all of his other ongoing health issues piled on top of it.

Seriously, you have been hit with so much heavy stuff all at once lately. It’s just too much.
I really hope your mom's recovery is going smoothly.
Keeping my fingers crossed for you—sending you so much strength, ugh...

I'm giving away two books: Cancer, Problem, and Solution and The Oil-Protein Cookbook by Dr. Johanna Budwig, if anyone can actually use them.
Chicago.

Has anyone actually managed to get a response via phone or email from the Institute for Simulation (Zg Corp) regarding their evaluation status? I'm waiting on results for my parents from back in October. I know plenty of people have been waiting much longer than that, but if there's anything I can do to push things along or prevent them from slipping through the cracks, I'd love to know. Otherwise, they have this number, 01/ 6458 590, but I guess nobody ever picks up there.

Hey there,
I’ve been lurking on this forum for years, and honestly, I never imagined I’d be the one starting a thread, let alone being an active part of this community.
Basically, my husband—who, until just three months ago, didn't even know his blood type because he only ever saw his dentist—suddenly became an oncology patient, 100% disabled.
The man is 67, and back in August 2019, an ultrasound showed nothing but gallstones. He kept putting off the surgery, but finally, after some serious coaxing from me and a close friend of his who's a doctor, he decided to go for it. He went in to meet with the surgeon, and since it had been over a year since his last scan, the doc insisted on a new ultrasound. Well, you all know how nightmareish the waiting lists are around here—since my husband is a veteran, he was looking at a two-month wait, while the rest of us mere mortals were stuck looking at eight months at Osijek University Hospital—so we just scheduled him for an ultrasound at a private clinic the very next day for a cool $100 bucks.
Right after the ultrasound, the radiologist (who has been a good friend of MM for years, since Osijek is such a tight-knit community) looks at him and says, "Look, buddy, you've got a much bigger problem than just gallstones..." It was advanced-stage colon cancer. There wasn't a single symptom, nothing except maybe feeling a bit bloated after eating something heavy like chili or a thick stew.
....and that’s where it all starts... the beginning of the fight, or maybe the beginning of the end... I honestly don't know yet.
He was rushed into emergency surgery on the afternoon of November 22nd due to the threat of an ileus. After the procedure, the surgeon called me and just said, "Ma'am, it’s not good." He couldn't reconnect the bowel, so he had to put him on a colostomy bag. He has metastases in both sides of his liver (it's inoperable; the PET scan showed one lesion is 17cm long) and also in both lungs.
When I asked him how much time we actually had—was it 3 months? 6 months?—he just answered, "YES."

I honestly can't wrap my head around how rapidly he's physically wasting away. Even though he’s an incredibly intelligent, emotionally stable, and tough guy, and he’s fully aware of what's happening (though I hide the true severity from him; I'm still trying to convince him it's only Stage 2, even though it's clearly Stage 4), it's just devastating.
In the last three months, he's lost 25 kg. He went from 105 kg down to 80 kg; when I massage him, you can literally see his ribs.
He knows he has to eat, so he forces himself to do it. He’ll take an anti-nausea pill and then struggle through almost an entire portion of lunch.
I just can't come to terms with the fact that this terrible disease hit *him*. He is such a genuinely kind and positive person; everyone who knows him loves being around him, from little kids to the crankiest old men.
He handled the first two rounds of chemo (the infusion followed by 14 days of cytostatics) pretty well, but right after the third round, just the second day after the infusion, he was hit with this horrific hiccups. They came in short bursts every hour or two and lasted for four straight days. We tried everything, including Gas-X (which gave him maybe a couple of hours of relief), but nothing worked. It just finally stopped after four days, but it absolutely wrecked him. All the muscles in his abdomen are aching now—some of them even hurt just to touch. It's just awful.

Unfortunately, I can't quite recall the specific names—I’ve pretty much suppressed that entire chapter of my life—but my dad was prescribed medication specifically to manage those hiccups. It was our family doctor who recommended them to us.

None of us ever anticipated we'd end up discussing this, but this is one of those illnesses that doesn't discriminate. Hang in there.