Support resources for families dealing with cancer and other serious illnesses

Susan Ruiz76 said:My husband is in the hospital right now. He left home using Duragesica 25, but today they patched him up with the 50, plus they’ve got him on: subcutaneous Lidocaine injections, Zaldiar tablets, Normabel tablets, and the chart even lists Tramal injections—so I’m sitting here wondering if this cocktail is actually okay 😕. Honestly, he’s losing his mind from the pain without all this stuff (he’s dealing with a lung abscess caused by tumor tissue necrosis, which, unfortunately, wasn't caught immediately. Antibiotics started late, though we're praying they kick in soon—the doctors basically told us they thought it was a terminal situation). I feel absolutely terrible—but then again, who am I to complain when he’s going through something a million times worse? I don't know what to do, what to think, or how to deal with the constant ringing of the phone and all the mindless comments and questions from neighbors. I honestly just want to sneak into the hospital, curl up next to him, and watch over him...

Susan Ruiz76,
I’ve been totally out of commission the last few days. Caught some nasty virus and ran a fever.
My husband uses the 50 Duragesic too, along with Tramal drops as needed (and god, the need is getting more frequent lately), plus he takes Praksiten and Sanval every single day.
I know you're struggling, and man, it's heavy.. There isn't much you can do, everything is in God's hands. Just pray He eases the pain.
The nonsense, the questions, the people around you constantly chiming in.. Just tune them out. My take is that most people just want info because they need something to talk about. It feels like my husband has already been buried a million times over in their minds.. I've seen it all. It used to hurt, it used to get under my skin.. But now? Just shut them out.

Your husband is definitely taking the brunt of it, but don't act like it's not crushing you too. You have every right to say you're struggling, that your heart is breaking, that you're terrified, or that you're just plain exhausted..
Hang in there. Things will look better tomorrow, you'll see!

Susan Ruiz76 said:Thanks so much,🙏
this whole forum and its "help"—it’s like—all for one, one for all—you’re the only person who actually bothered to respond to my desperate post in three days and gave me some actual support. I wish casualrider21 nothing but the best, for you and your dad, and for everyone out there fighting the good fight. Take care.
As for the rest of you, goodbye. It’s funny how everyone shows up when you have to spend all day on this Forum arguing about some supposed alternative treatment, but the second a real, raw, human crisis hits? Ghost town. No one’s here.

So, yeah, peace out to this entire Forum tonight, while yet another person—just like so many others—is out there struggling for every single breath.

Don't go down that road. Look, I get that you're feeling hopeless, but everyone here is fighting their own battle, whether it's for themselves or someone they love. It’s just as heavy for everyone else. Everyone’s got a heart that's hurting.
Just think about how many people have "left" this place, how many people here have lost their world. And then look at how many of us are still standing right there in the trenches with you. Nobody has it easy. We're all in the same boat. We're all scared, sure, but we're also all holding onto hope for a better Tomorrow!

Barrett, I’m sorry you’re going through this. I didn't reply to you directly because, honestly, looking at what's been said, you’ve already received the same answers I would have given. There’s no point in us just circling the drain by repeating the same thing over and over. On that note, I’d strongly suggest you sit down with an anesthesiologist to discuss your husband's pain levels. They are the only ones actually qualified to dial in the right dosages or mix those specific "cocktails" needed to manage his pain without making the whole situation worse.
Everyone here has felt that same agony you're dealing with right now, so please, don't ever forget that you aren't alone in this fight. There are a ton of us, and that’s exactly why staying connected matters—even when the discussions on here get under your skin or start to feel irritating.
Also, let's be real: don't expect this place to be a magic bullet that solves everything for you. That's just not realistic. Some things absolutely require a medical professional, like figuring out those precise pain management doses.
Hang in there and don't walk away. It’s not like this Forum or the patient advocacy groups are providing you with much of any use anyway if you leave.😢
If that's how it's going to be, then to hell with the association and all of it; there’s no sense in any of us wasting our time on this anymore.😢😢😢

Susan Ruiz76 said:Thank you,🙏
for this Forum and the sense of solidarity—the whole "all for one, one for all" thing. You were the only soul who actually responded to my desperate post over the last three days to offer some kind of support. I wish nothing but success to you, your father, and everyone else out there fighting their own battles. All the best.
As for the rest of you, goodbye. It’s funny how everyone is right here when you want to spend an entire day on the Forum arguing about hypothetical alternatives, but the moment a real, raw, human crisis hits the fan, everyone vanishes.

So, I’m saying goodbye to this entire Forum tonight, while yet another person—along with so many others—is struggling just to catch their next breath.

You talk about "all for one, one for all," but when we try to organize actual initiatives to drive change, do you have any idea how few members actually step up? Barely six people. We fight like lions, not just for ourselves, but for others too. Our days are far too short, and on top of that, we carry the heavy weight of seeing loved ones in pain or watching helplessly as medication fails to work. That wasn't fair of you to say.

Angela Wright said:Just head over to this link for the "All for Her" Foundation—they’ll walk you through everything step-by-step. You can find all their contact info right there on the site too.

Thanks so much! Best,

Barrett—you’ve asked a very specific question, one that really only someone who has lived through it or works professionally in the field could answer. There aren't many of us here, and even then, we all have such different diagnoses, right? Would you actually know how to give a direct answer regarding tumor lysis syndrome? That’s such a critical issue for lymphoma patients. I suspect you wouldn't, though, because you’re fighting a different kind of evil with its own unique manifestations and hurdles. You don't have the bandwidth or the energy to worry about the specifics of other types of malignancies. Just like > decided, I’ve realized I don't have anything useful to add here since I don't know the first thing about it, nor would I dare offer advice on something where you truly need a doctor's word.

In the end, we’re all fighting our own battles. I have my next round of chemo tomorrow, and honestly? I’m a nervous wreck. I am just so scared. Even after the first round, I felt sick for two whole days, and they tell me it only gets harder with each session. Every single morning when I wake up, I find myself grabbing a strand of hair just to see if it's still there. It sounds silly, doesn't it? I mean, hair loss is probably the last thing I should be obsessing over, but that's just how it is. Sometimes I wish it would just fall out already; the waiting is the absolute worst part. I’m brushing my teeth five times a day, applying Heparin cream ten times a day because I'm terrified of sclerosing, I'm constantly diffusing my rooms with tea tree oil, spraying everything with disinfectant... I’ve practically turned my entire home lab into a masked zone just for me. I’m starting to act a little manic, aren't I? Maybe I should have written something comforting to you, but what comfort can someone else offer when they're also sick? Can I even begin to understand what it's like having a spouse who is ill? We’ve only been married six months; I haven't even had the chance to learn what marriage is like under normal circumstances—between us living apart for work and now this diagnosis. I feel terrible because I really can't offer you any solace, even though I know how awful this is for you. Because in my eyes, as hard as it is for you, you still have what I don't: your health. And here I am, the lucky one, because I got the "best" kind of cancer; they say if you have to choose, you pick the one that hit me. But I have to ask, who would ever choose anything from this? In what kind of devilish choice could this possibly be?

I wonder if it was even smart of me to post this. I don't want anyone's pity, and I certainly don't feel the need to rub my own misery in the face of someone who is also going through hell. I believe you were just having a moment of weakness (how could you not?) and that you don't truly mean what you wrote. But no, > is right—you weren't being fair. Sorry.

FOR EVERYONE ELSE—if you haven't yet, I highly recommend picking up a copy of the Patient Bill of Rights. Honestly, if I’d known about this sooner, maybe my biopsy wouldn't have been quite as traumatic as it was. I haven't written specifically about it before, but in short—the only right they didn't violate was the one regarding post-mortem care, but that was mostly due to technicalities. So much is violated, and things are presented to patients in such an unprofessional way, with this arrogant attitude that makes you believe they are telling you the truth. Maybe it’s a losing battle, but I’m heading to my chemo tomorrow armed with that book just in case anyone needs a refresher (maybe if I run into that... well, let's call her the doctor who performed my biopsy). I’ll have some Post-it notes ready too, because the nurses have been smoking in the patient restroom, and if that happens again tomorrow, I’ll leave a little "thank you" note on the mirror to let them know how much they're "enhancing" an already wonderful experience.

Drew Flores13—good luck. Please let us know how you're doing and share any news, good or bad (though I'm crossing my fingers for the good stuff). 🙂

Angela Wright said:Well, it’s not like this Forum or the association website provide any actual value at all, right?😢
If that were actually true, then honestly, what’s even the point? Why would any of us bother spending our time on the association or anything else?😢😢😢

Honestly, if it weren't for this thread and the Hull Forum—which is actually quite interesting in its own way—I wouldn't have learned so many useful things. I'd probably be out there learning everything the hard way, wouldn't I? So far, I haven't dealt with a single mouth ulcer, which is supposedly the most common side effect... and that's entirely thanks to you guys. I'm getting my blood work done today, and I'm expecting great results, also thanks to the advice I found on these forums. THANK YOU, everyone!

Barrett, I am truly sorry you are going through this and feeling this way. It feels unfair for any of us to be in these positions, doesn't it? But unfortunately, here we are. I understand why you feel wounded and helpless, but taking it out on others because of your own pain isn't the right way to go.

Angela Wright and gentletiger46 gave you some great responses, so I don't want to just repeat what they said. This Forum is meant for discussion, sharing experiences, and finding support, which often leads to really helpful information. However, looking at how many different topics there are, it’s unrealistic to expect that every single thread will have someone facing your exact issue or someone who specializes in your specific struggle.

Personally, this Forum helps me. It gives me strength to see people fighting through such difficult times and cheering each other on against this terrible disease. I can't be online constantly to reply to every post, and I also don't want to be repetitive if someone has already answered.

I believe your "accusatory" post came from a place of overwhelming sadness that is hard to manage, but please try to release that emotion in a different way rather than attacking others who aren't at fault. We all have our own ways of coping with an easy life, and receiving support from those with similar stories can be so incredibly helpful.

I hope that, alongside your doctor's consultations, you've been prescribed a medication combination that eases your current condition.

Sending my heartfelt support to everyone else, hoping things start looking up!

Hey Barrett,
get in here and talk to us. We all know what you're going through right now. Seriously, we get it. Some days just suck like that. I have those days too—where I’m just being a total nightmare, you know? It feels like you're stuck in a hole with no way out, like there's no help coming and nobody actually gets where you're coming from... But man, it passes. Your husband is going to be okay. My guy has been through the wringer and survived it all, too. It'll work out, just watch.

Man, it’s been rough lately just scrolling through this Forum and seeing nothing but pure negativity... Honestly, guys, we should be looking out for one another instead. If life is already throwing garbage at us and everything feels heavy, there’s no reason for us to keep passing that bad energy along to each other... We could try filtering all this crap into something actually useful, like some actual comfort, a shoulder to lean on, or just some shared strength and grit—that thing we're all fighting for right here...
Sending you all some peace, whatever bullshit life decides to throw our way next.

Grace Stewart6 said:My dad has gone through everything—biopsies (including lymph nodes), surgery on a growth, PET/CT scans, bronchoscopies—you name it, they’ve done it. And still, they haven't found the primary tumor. Just the metastases.
He's starting general chemo now, and I just pray it works.
Sometimes, unfortunately, getting an exact diagnosis isn't that straightforward.

But hold on a second... tumor cells are tumor cells, even in metastases...

Are you telling me there aren't five different types of tumors? They can't be clueless about which one it is—it's one primary and four secondary... That sounds like a nightmare, God help us.

I had this explained to me at the hospital in Cleveland, and they were very clear... the primary tumor sends out signals and creates those metastases. If the metastasis is adenocarcinoma (lung cell carcinoma) which we biopsied from my mother's chest... then the primary tumor can't be small cell lung cancer or squamous cell carcinoma 😕😕 (it can't be three different types of carcinoma)...

Do you get what I'm saying?!

Honestly, once my oncologist laid it out logically for me, I realized they were right... don't just settle for some generic treatment. You can identify the specific cancer cells from the metastases and prescribe the right therapy based on that...

Just don't let them pull the wool over your father's eyes.

Back again:
My mom had her checkup at the hospital in Cleveland yesterday, and the gynecologist told her it’s a skin tumor. They scheduled her to go back and get it removed in a week. I finally managed to talk her into seeing a private specialist instead, because honestly, waiting around like this is just playing with our nerves.

holloweagle6 said:Here’s my update:
My mom went for her follow-up at the hospital in Cleveland yesterday, and the specialist told her it was a skin tumor, scheduling the removal for a week from now. I somehow managed to convince her to just go to a private clinic to get it handled immediately, because waiting around like this is nothing more than a cruel game of nerves.

Well, my mother had her stitches removed today, and we finally have the results.
It turned out to be skin cancer, but the surgeon removed everything, and the dermatologist confirmed that should be sufficient. There is no need for radiation or any other treatments😁.
She will just need regular checkups to make sure everything stays under control.
I certainly hope everything goes smoothly for your mother once her procedure is finished.
The dermatologist mentioned to her that it was one of the less aggressive types of carcinoma.

Grace Stewart6 said:So, my mom went to get her stitches removed today and we finally got the results.
It turns out it was skin cancer, but the surgeon cleared everything out and the specialist at Dermatica said it should be enough. No radiation or anything else is needed😁.
Mom just needs regular checkups now to make sure everything stays clear.
I really hope everything goes smoothly for your mom after her procedure, too.
Dermatica mentioned to my mom that it’s one of the less dangerous types of cancer.

👍That is wonderful news, I am so happy to hear that. Wishing you all the best with the follow-up appointments!

I’m looking for anyone who actually knows what they’re talking about to weigh in here... My dad just got discharged from the hospital, but he’s dealing with Stage IV large cell lung carcinoma, which is basically the end of the line. He finished his last round of chemo back in early March—Taxol and Carboplatin—but it didn't do a damn thing. The doctors basically told us straight up that there's nothing left for them to try. He’s lost all his appetite, can barely get out of bed, and he's been on morphine every single day... His liver and kidneys have been killing him, and all we get from the medical team are more bad news and grim outlooks.
I've got his test results right here, though I'll only list the parts that make zero sense to me, so if anyone can translate this jargon, please help.
Abdominal Ultrasound: Shows an enlarged liver with a hyperechoic lesion in the right lobe. There's also a massive expansive mass in the right adrenal fossa, over 90 mm, which points to a secondary lesion.
Metastatic reg. right adrenal gland susp. C 79.7 (to me, this sounds like it spread to the kidney)
He’s had red blood cell transfusions, Tarceva, Fentanyl patches, Megostat...

As for how he’s doing overall, he’s using a cane to get around, eating okay, and can still talk quite a bit. But he’s being hit with these brutal hiccups and bouts of belching—it’s so violent it feels like he’s actually choking. A few times now, it’s been so intense I genuinely thought he was going under... We’ve been giving him Largoxtil tablets, which worked once, but they aren't doing a thing this time around. I’m at a loss... I’m terrified he’s going to choke to death.

Just to leave you guys with something a little more hopeful, because even when it feels like the lights are going out—they aren't... You can't let this hell win, not even for a second. I promised my old man I’d fight right until his very last breath, and that’s exactly what’s going to happen.
I'm thinking of all of you and keeping you in my prayers, so please, tell me what to do.

Man, regarding the hiccups—my dad went absolutely insane. Like, literally losing his mind because the hiccuping just wouldn't stop. At first, we were convinced it was from all the procedures, you know, air getting in during things like a bronchoscopy or a colonoscopy, but eventually, we realized it was neurological. It was basically his stomach acting up from nerves.
He tried everything under the sun—Largoxtil, Eglonil, Ativan, whatever they threw at him—but nothing worked.
The second he finally got back home, he hiccuped for one more day and then boom, it just stopped. Thank God!

Maybe try some fennel tea. Might actually do something for you.

The doctors kept telling us it was because of liver metastases pushing up on the diaphragm... but hey, it stopped for him. Just for context, my dad has Stage IV microc. cancer with spread to his liver and bones.

Talk to the doctors, and honestly, give that tea a shot. It’s free, right? Also, ask them about Eglonil.

Also, I'm a little confused by the part where you said, ''first he lost his appetite, couldn't walk...'' When did things actually start looking up? When did he start eating, walking, and talking again??

Hang in there! I'm rooting for you!

Grace Stewart6 said:So, my mom went in to get her stitches removed today and we finally got the results back.
It turns out it was skin cancer, but the surgeon managed to clear everything out, and the specialist at Dermatica said that should be enough, so there won't be any need for radiation or anything like that😁.
My mom just needs to stay on top of her regular checkups to make sure everything stays under control.
I'm really hoping that once your mom is done with the removal, everything will turn out fine.
The folks at Dermatica mentioned to her that this particular type of cancer is actually one of the less dangerous ones.

I'm sorry to ask, but what exactly was the diagnosis? Was it malignant melanoma or basal cell carcinoma?

Because if it's malignant melanoma—which I truly hope it isn't—then the situation is quite different from how doctors typically present it to you. About six years ago, our dermatologist told us everything was perfectly fine. Today, my husband is already at Stage IV, with no remaining therapeutic options left, despite the fact that he went for all his regular checkups. So, if we are talking about melanoma, please reach out so I can explain why doctors don't always tell the whole truth and what steps you might take to prevent what happened to us.

On another note, for those who have been following our journey fighting melanoma, I'm sorry to say things have taken a turn for the worse. The latest PET/CT scan showed five new metastases, including one in the lungs. Since the only way to truly know what's happening would be through surgery or potentially a biopsy, and my husband is refusing any further surgical interventions, we're essentially left waiting to see how things unfold.

He has a deep belief in alternative healing methods, and for now, he's decided that we aren't going to pursue any more clinical trials or experimental medicine. While I don't entirely agree with that stance, I am supporting him and just hoping for the best. Because, honestly, there isn't much else left for me to do but hold onto hope.

casualrider21 said:And yeah, I’m a little lost on this part, "first he lost his appetite, couldn't walk..." When did things actually start looking up? Like, when did he start eating again, walking, talking...???

The "miracle" happened right after he got a transfusion. Honestly, if you ask me, they should've done that the second they brought him into the hospital a month ago, but... whatever. Every single time he dropped half his body weight—whether it was the chemo, the disease itself, or who knows what else—he'd get an RBC transfusion and suddenly things would look visibly better.
Maybe this is just a temporary window, maybe we're all just grasping at straws and trying to convince ourselves everything's gonna be fine this time around, but I don't know, and I really don't want to think about what happens if it isn't...
I'm gonna try to nudge him toward some fennel tea, since he's getting pretty skeptical about everything lately.
Thanks, casualrider21, sending love to everyone 🙂

Does anyone actually know if cancer patients can go overboard with honey? My dad is basically living on it—I’m talking several pounds a month—because he’s convinced it’s some kind of miracle immune booster. And honestly, I can't even argue with him too hard because he hasn't caught a single cold all winter while the rest of us have been absolutely wiped out by every virus going around. But then I started reading stuff about how tumors thrive on glucose, and now I’m genuinely freaking out that he’s fueling the fire with all this sugar...🤷

brisksurfer said:Does anyone know if cancer patients can eat honey in large amounts? My dad goes through honey like crazy—we're talking several pounds a month. He believes it boosts his immunity, and honestly, he didn't catch a single cold all winter while the rest of us were stuck at home sick. I've read that tumors feed on glucose, so I'm genuinely worried about how much he's consuming...🤷

I think you've already answered your own question. If everyone else in the house was sick all winter and he stayed perfectly healthy, it's pretty clear the honey isn't hurting him.
Yes, there is a school of thought—supported by both alternative and mainstream medicine—that suggests sugar can accelerate cancer growth. However, if you strip away everything that brings a patient even a small amount of joy, like food, you risk driving them into a state of depression. That's often when the reality of the illness truly sets in. About a year ago, I read a doctor's opinion online where he stated something to the effect of: "Food didn't cause your cancer, so food won't cure it either." Personally, I don't entirely agree with that sentiment. Nutrition is one of many vital factors in the healing process. If it were my father, I wouldn't forbid him from enjoying his honey.