Support resources for families dealing with cancer and other serious illnesses

Kevin Bishop10 said:Hey there!

First off, congrats to everyone in America on joining the EU!!! I'm actually jealous!

There's a chance they might swap out my Cisplatin for Carboplatin because of some brutal side effects. Anyone been through that? Is it just as rough, or maybe easier?

Or, they might add Aloxi alongside the Cisplatin. Has anyone here messed with that drug before?

They've never done a gastroscopy on me, so now they're debating doing one to check my stomach, bile ducts, and pancreas all at once. Anyone have experience with that kind of exam?

Give my best to Vedran and Angela Wright! You guys are total heroes!

Man, I honestly thought you were getting the Aloxi. When I first switched from FOLFOX + Avastin, I wasn't on anything else and I puked like 33 times... once I told my oncologist, he put me on Aloxi immediately and since then I've handled the FOLFOX chemo with Oxaliplatin relatively okay—though, let's be real, chemo is absolutely brutal, especially that tingling in your hands. Right now, I’m about 10 days into my Anagams, just floating around until I snap out of it, then for the last 7 days I relax and feel great and get stuff done. I was even at the beach this morning, though that nerve tingling hits whenever the temperature changes; if that bothers you, man, it's no joke. I got used to it, even though during Anagams it felt like I was getting electric shocks every thirty seconds. But whatever, I am NEVER GIVING UP..
Heading in for chemo number 57 tomorrow.
And I might get my CT results this Friday. And I am SO, SO, SO, SO SCARED of progression. Ascites... ugh, that thing is nasty. Peritoneal carcinoma... ugh, ugh, ugh, I just hope it doesn't grow. Then there's the threat of new colon cancer or liver mets, or God forbid, bone mets... all that's waiting for me sooner or later, along with death eventually. But still. I'M FIGHTING UNTIL THE END..
BTW, if you've had a colonoscopy, then a gastroscopy is child's play. Just stay calm and don't sweat it. They put a little ring in your mouth to bite on, slide the tube down to your stomach, and you just gotta swallow. It's not nearly as scary as people make it out to be... I'd take 10 gastroscopies over one colonoscopy any day. Hahaha.
HANG IN THERE.. PROVES YOU CAN DO IT. JUST TAKE IT SLOW..

wiredotter75, I’m having an absolutely brutal day today. A little while ago, I was actually praying to God to either give me some strength or just stop tormenting me altogether. My situation isn't even comparable to yours, but being stuck in this hospital for over a month now—dealing with these constant blood pressure swings, this killer back pain, plus everything else that comes with dealing with the American healthcare system and the doctors here—it has completely drained me. I am so swollen with edema that I’m honestly just counting down the minutes until they can finally hook me up to a catheter and drain this all out of my system... and yet, according to my doctor, my condition is still considered "satisfactory." Honestly, I wanted to thank you for your post, because knowing you, I feel like I don't even have the right to sit here and whine. Hang in there; you really are incredibly brave and an exceptional guy. Be proud of yourself! And if you can, take a little swim at sunset for me this summer too.

I’m not entirely sure if I should be posting this here, but I thought I’d give it a shot:
Basically, I have a nearly full container of specialized medical nutrition sitting in my fridge. It’s approaching its expiration date, and since I don't need it anymore, I figured someone might be able to save some $33 and find it helpful...
It’s Maltodextrin (we bought it for my dad back when he was having trouble eating—I think you all know how that goes)
You can find some more information about it here

If anyone doesn't mind that it's been opened, it really isn't an issue—only a few spoonfuls have been used. It retails for about $40 at a local pharmacy, and I’d honestly be so happy to see someone put it to good use rather than letting it go to waste. It has a very neutral flavor (it’s almost like it has no taste at all), so it’s easy to mix into anything, whether sweet or savory...
Feel free to send me a private message so we can coordinate; I'm located in Washington, D.C., near the Mamut area.

Hello everyone. My father has just completed six cycles of chemotherapy following the Mayo Clinic protocol. Our next step is to get his latest blood work results and take those along with the chemo recommendations to meet with his oncologist. It is a relief that we can handle this in San Francisco to save on travel time...
Given that he is 78 years old—though he was quite the studious young man back in the day 😁—what kind of side effects should we be bracing for? Also, would it be wise to shave his head completely? He’ll end up looking like a total bald eagle with a beard... my poor dad...
Angela Wright and wiredotter75—thank you both for the positivity and for being here.

loneraven162 said:Hi everyone, my dad just got his appointment scheduled for July 3rd—I couldn't help but tear up. Just last night, the poor man told me he’s worried no one will even treat him because of his age 😢 please keep your fingers crossed for us!

wiredotter75 said:man, I thought they were giving you Aloxi... once I switched from FOLFOX plus Avastin, I wasn't taking anything and I threw up 33 times... once I told my oncologist, he gave me Aloxi right away and since then I've been handling FOLFOX chemo with oxaliplatin relatively okay, though honestly, chemo is brutal, especially those tingling hands. Right now, I'm in the thick of it, floating around for about 10 days before I come to, then for the last 7 days I relax and feel great, doing everything... was at the beach this morning, but that tingling when the temperature changes stays. It's not easy, but I'm used to it. At one point, it felt like getting electric shocks every thirty seconds, but still, I AM NEVER GIVING UP...
going in for chemo number 57 tomorrow...
and I might get the CT results this Friday. AND I AM SO SO SO SO AFRAID OF PROGRESSION. Ascites, ugh, that's a nasty one... peritoneal carcinoma, ugh ugh ugh, I just hope it hasn't grown... more colon cancer and liver metastases or God forbid bone involvement... all of it's waiting for me sooner or later along with death, but again. I FIGHT TO THE END...
BTW IF you've had a colonoscopy, then a gastroscopy is child's play... just stay calm and don't be scared... they put a ring in your mouth to bite on and slide the tube into your stomach and you just have to swallow, it's not nearly as scary as it seems... I'd do 10 gastroscopies for one colonoscopy... hahahaha
HANG IN THERE... IT CAN BE DONE. JUST TAKE IT SLOW...

Props to you. 🙏

Angela Wright said:wiredotter75, I’m having such an exhausting day. Just a moment ago, I was praying to God to either give me strength or just stop tormenting me. My situation isn't comparable to yours, but being hospitalized for over a month now, dealing with these constant blood pressure swings, this killer back pain... plus everything else that comes with the American healthcare system, the doctors, and the conditions here... it's completely drained me. I'm so swollen with edema, I can't wait for them to finally hook me up to a catheter just to get this fluid out of my system. According to the doctor, my condition is still "satisfactory." Actually, I wanted to thank you for your post, because reading it, I know I don't have the right to whine. Hang in there, you really are incredibly brave and an amazing guy. Be proud of yourself! And a small favor—go for a swim at dusk for me this summer too.

I'm sorry. 😢
Hopefully you're nearing the end of this ordeal and that everything goes smoothly and easily. 🙂

Rachel Wood27 said:Hey everyone, my dad’s been stuck in the hospital at Washington, D.C. Memorial for a week now. Even they couldn't find the primary tumor, so they did a biopsy on the liver metastasis during a strep procedure. It turns out it's small cell lung cancer. 😢 Ever since we found out about the spots on his liver just over a month ago, I’ve been praying it wasn't pancreatic or small cell lung cancer. Turns out, it is. Sadly. They still can't see anything on his lungs—not on CT or X-ray—it's clearly too tiny to detect. As for treatment, they started radiation on his spine because the pain is brutal, along with a low dose of chemo for now. His bilirubin spiked to around 100 this past week, so they're hoping he responds well enough to the chemo so they can eventually place a stent in his bile duct and move him up to a stronger dose. He actually started chemo and radiation yesterday; he's getting Cisplatin, which I think is the standard first line for lung cancer.
Just so you know our story, he didn't have any symptoms until those groin and spine pains showed up two months ago—those were the first signs of the metastasis. Back in October last year, he coughed up a little blood a few times in the morning. Not much, just specks, so I sent him to the doctor. They scanned his lungs then, and everything looked fine. An oncologist told me later that things probably started moving then.
Dad knows the diagnosis. He knows it's the worst type of lung cancer, but he's staying positive and wants to fight.
Angela Wright, I was wondering if it's okay to give him raw propolis while he's on chemo? I've also been giving him beet juice, and his blood work looks decent—he's not even really anemic anymore after that bleeding episode. Everything is more or less okay except for that bilirubin level... Do you have any other recommendations besides propolis?

Hi,
Just wanted to check in. Unfortunately, my dad has small cell too. 😢 It'll be exactly one year since we first found out. He's doing alright right now. He has a follow-up appointment this spring.
It's a nasty disease, really nasty, but you have to fight. You can't give up.

Anyway, sending my best to everyone! Hang in there, Angela Wright!

Regarding those mistletoe injections—does anyone know who I should talk to for specific instructions? Maybe a homeopath? I was actually planning to set up an appointment for my dad with a homeopath anyway, just to get their take on things. It might be a good chance to ask about the mistletoe too, since he’s already using some other herbal supplements right now. I really hope they're helping him feel better and stay functional, at least.

Best to the rest of you all. Keep fighting the good fight. Wishing you all plenty of strength.

So, here’s my humble little take on things...

We actually went to a private consultation with an oncologist because my mom is fighting breast cancer right now, and we ended up asking her about all sorts of supplements, white mistletoe, homeopathy, and stuff like that. It turns out, she had this really personal connection to the field—her own father had microcirculatory lung cancer about ten years ago, and she was actually his oncologist back then. To help boost his immunity, he used propolis, but specifically the kind you get straight from local beekeepers, not the store-bought stuff. He also tried those white mistletoe injections after he cleared the initial stage, though he ended up giving up on them after the very first shot. Her take on it, though, is that you probably shouldn't be mixing homeopathy or a bunch of different immune boosters at the exact same time as everything else, mostly because you just never know how those things might interact with chemotherapy.

Anyway, her father is ten years past his diagnosis and is doing absolutely great... so, please, don't lose hope.

Ivancic, Vedran, Pedesete, and everyone else out there—hang in there and please keep us posted on how you're doing...

I figured I’d check in and give an update...
Dad’s been home since Tuesday. He finished his first round of chemo, and now we’re just playing the waiting game for three weeks until the next cycle. I actually went to see another oncologist for a second opinion—just to be sure—and she was pretty blunt about how bad things look. She was honestly baffled that they even started him on chemo given his liver enzymes and bilirubin levels, not to mention the anemia he's been dealing with ever since that damn bleeding incident. Before all that, his GGT was elevated, but she mentioned that, despite the tumors in his liver, his blood work could almost be considered "normal" by comparison. But after those ulcers ruptured, he really took a hit because he didn't get a transfusion (they decided it wasn't necessary at the time), and since he couldn't eat for a few days, things just spiraled—his liver numbers shot through the roof. Even though his latest labs show a slight dip—actually, a decent drop—he’s back to being anemic again. His hemoglobin is down to 78, and this second doctor was questioning how they even let him leave the hospital with levels that low. So, right now, we’re doing everything we can to boost his counts. He’s drinking homemade juice made of beet, carrot, apple, honey, and lemon, plus some propolis. We’ll do more blood work this Tuesday and see if a transfusion becomes unavoidable.
For now, he’s mostly staying in bed because of some intense spinal pain, but he’s doing leg exercises every single day. We’re planning to start getting him up and walking a little bit soon; he’s got such a massive drive to get back on his feet. Aside from the back pain, he’s actually feeling okay mentally.
I’m just praying his condition stabilizes over these three weeks before the next round—that this first dose actually does its job and brings that bilirubin down so he can stay on track with the treatment.
Small cell carcinoma is a real nightmare. My dad just has terrible genetics—lungs have always been our family's Achilles' heel. His grandfather passed away from tuberculosis, his father died of smoker's bronchitis and was an asthmatic himself at 55, and now my dad is facing lung cancer at 55 too. It’s just... a lot. And yeah, the smoking definitely played its part, even though he quit four years ago. He’s always been a strong guy, never really sick, and he’s holding up surprisingly well mentally. He has the will to fight, and we’re just hoping he’s been given a fighting chance.

I picked up a piece of information during my consultation today that might be useful for some of you. The oncologist mentioned that with these occult (hidden) carcinomas—which is what my dad is dealing with—it’s most often small cell. Even when they can't confirm it with absolute certainty, the treatment protocols are based on platinum, essentially treating it as small cell because that’s statistically what it usually turns out to be.

Nancy Lee—thank you so much for the support. I’m keeping my fingers crossed for your dad; I hope he fights through this and wins, and that everything keeps going as well as it has so far.

To everyone else out there: keep fighting until the very end, because it isn't over until it's over. We need strength, positivity, and a little bit of luck. Despite the grim prognosis, I am NOT giving up!!

Hey everyone. Like I mentioned before, my dad is fighting gallbladder cancer right now. He’s currently on cycle treatments, carrots, and beta-glucan. I see you guys talking about propolis—any recommendations on which brand is actually good or where I can pick some up? I'd do absolutely anything to help him out. Honestly, reading through all your stories is brutal because it feels like we're all stuck in this same nightmare. One lady told me that when one door closes, another opens, so I'm trying to hang onto that. Sending strength to all of you. Oh, almost forgot—does anyone know anything about Dr. Miller (the oncologist)? I booked an appointment with him to get a second opinion for my dad.

My body finally hit its limit, and I ended up in the ER this past Thursday. Everything turned out fine, though—the little one arrived weighing 5 lbs 1 oz and doesn't need any extra help; she's fully developed. I'm still in the ICU while they work on getting my blood pressure back to normal, but I’ll likely be moved to a regular room tonight. Honestly, thank God this part of the story has a happy ending. Thanks to everyone for all the support and prayers.

Angela Wright said:My body just couldn't take it anymore and I ended up in the ER this Thursday. Everything turned out fine, though. The little one is 5 lbs and doesn't need any special help—she's fully developed. I'm still in intensive care while they get my blood pressure under control, but I'll probably be moved to a regular room tonight. Honestly, thank God this part of the story had a good ending. Thanks to everyone for the support.

Congrats on the baby. 😍

Congrats on the baby! Hope you get back home soon and can finally just relax.

Angela Wright said:My body just couldn't hold out any longer, so I ended up in the ER in my fourth trimester. Everything turned out fine, though. The little one is 5 lbs and doing great without any extra help—totally full term. I’m still in the ICU getting my blood pressure stabilized, but hopefully I'll be back in a regular room tonight. Anyway, thank God this part of the story had a good ending. Thanks to everyone for the support...

Congrats. 😍

Angela Wright, huge congrats on the little one! Hope you both enjoy every second of it 🙂

Congrats, Ivanic, hope things stay bright and healthy for you...
Unfortunately, my situation seems to be sliding backward. My markers spiked again—it went from 6 to 8.4, and now it's sitting at 9.3. I get my CT results this Monday, and honestly, based on the numbers, my doctor thinks the cancer might be progressing. I’ve already dropped 3 pounds in just 3 days... I've finished 57 rounds of chemo so far. But look, if they pull the FOLFOX option from me, I'm in deep trouble. I might even just call it quits on the chemo altogether and pack it in. I'll check back in on Monday once I have the CT news..

wiredotter75, thanks.

I’m really sorry to hear things have taken a turn for the worse. I get it—after fighting this battle for so long, burnout is inevitable, but don't you dare throw in the towel. Dig through the latest research, keep sending those medical files... everything I’ve learned from my own journey is that there’s always one more avenue to explore. Even if it isn't a total cure, sometimes just finding better palliative care makes all the difference. Hang in there.

My dad had surgery for colon cancer two years ago where they removed 13cm of his bowel. Two months ago, he started getting pains in his lower back and head, losing coordination, and dealing with nausea—which he just brushed off as exhaustion from working too hard in the field. Then, a month ago, he collapsed. It turns out he has four tumors in his cerebellum from secondary metastases, plus some in his lungs. He’s been in a hospital in San Francisco for a month now, and he was just at Mayo Clinic for radiation marking two days ago. Since the collapse, he’s weakened significantly; he can barely walk without holding onto something, his right arm is almost useless, and the dizziness and vomiting are constant. The doctor at Mayo gave him an appointment for July 16th, but said she can only proceed if he gets strong enough to actually sit through it. I’m lost. I’m emailing his scans to every neurosurgeon I can find to see if there's any other way. Does anyone have advice on what we should do next?

Hey Susan Fowler35, I’m so sorry to hear your dad is struggling too. Honestly, I’m in the exact same boat as you—just hitting up every lead possible because I’m desperate to find some kind of help for my old man. I actually had some people suggest I book a private consultation with Dr. Miller; apparently, he’s incredible both as a doctor and just as a person. So, I’m heading to his office this Tuesday with all the test results since my dad is in no state to make the trip himself, and we aren't even 100% sure on the diagnosis yet. It’s worth a shot, right? What have we got to lose?