Support resources for families dealing with cancer and other serious illnesses

Melissa Martinez5 said:My brother-in-law had surgery for throat cancer about a month ago.
He had a laryngectomy—they took everything out—so he can't talk anymore...
He’s got a breathing tube in his neck and still has to eat through a feeding tube in his nose...
They should be giving him something else today, I'm not quite sure what, something to help him swallow, and if all goes well, he might be home in about ten days...
Radiation is also scheduled for this month...
I was wondering if anyone here has experience caring for patients like this?

We’re going through a very similar situation. It’s my uncle, and we’re pretty much all hands on deck since there isn't anyone else to look after him—no wife, no kids.

He had his surgery two weeks ago. From what I gather, they removed everything just like you described. There was some concern about a growth at the base of his skull, which would have changed the whole prognosis, but thankfully it turned out to be benign.
It’s pharyngeal cancer that spread to the larynx.
Anyway, my uncle can already drink tea and coffee normally, but nothing else. He still needs to go through radiation, but supposedly the prognosis is actually quite good.
The bigger hurdle is that he has to kick certain habits that likely caused this in the first place—alcohol and smoking.

We’re just relieved he actually made it through surgery. Honestly, I don't think he could have handled chemotherapy. He’s diabetic, has liver damage from the drinking, he's incredibly thin, and his thyroid isn't great either. The ENT Specialist he saw initially didn't even feel comfortable operating, but he was very fair about it; he recommended a specialist at a different hospital who he said was excellent, suggesting that if she could perform the surgery, it would be the much better option.

In any case, the doctors told us not to expect major complications during treatment and to stay optimistic. I don't know how things are looking on your end—what is the surgeon saying?

I am looking for any kind of guidance.

A friend of mine had a routine checkup two months ago, and they discovered a large polyp in her colon. Things moved fast—she underwent surgery about a month ago to remove part of her colon, and she now has a stoma. A nurse handed her the discharge papers, but honestly, nobody explained a single thing about what comes next. She even saw her surgeon recently, and he practically snapped at her for not scheduling an appointment with an oncologist yet. I should mention—nobody ever told her she needed to! How is she supposed to know when to see them? Now, she’s just completely overwhelmed. Her husband travels a lot for work, so she’s mostly alone most days—no kids, just sitting in front of the TV. It feels like she’s slipping into a deep depression. I want to help her, but I'm feeling a bit lost on how to actually do that.

Are there any support groups, nonprofits, psychologists, or psychiatrists specifically for patients dealing with this? Somewhere they can turn for guidance on navigating the medical system, how to handle the doctors, and how to cope with the illness itself?

Thanks in advance

Arthur Kim10 said:Hey everyone!

Maybe this has been covered before, but I’m looking for some real-world insight here.
It's about my dad (67 years old). He had surgery for prostate cancer four years ago, and everything was smooth sailing until this year. Regular checkups, therapy, the whole nine yards—all good. But at his last appointment, his PSA came back elevated at 5.4 ng/ml (for his age, anything under 4.5 ng/mol is considered normal). Physically, he’s doing great; he stays busy working around the house, his appetite is fine, though he gets occasional pains in his lower abdomen.
He’s been referred to an oncologist, who told him it isn't cause for panic and that they'll likely move toward radiation therapy. Before that happens, he needs to get a CT scan of the abdomen and a bone scan.
I'm trying to find out if anyone has gone through something similar post-surgery. I understand the medical side of things reasonably well since I work as a medical technician—I know people live with this and move forward with their lives. I'm personally optimistic, but I really want to hear about other people's actual experiences.

The PSA isn't even that high, so I highly doubt there's any metastasis in the bones.
On top of the tests already ordered, he should probably get a CBC, CRP, general biochemistry, a urinalysis, and stool samples for occult blood three times.
Until all that data is in, we're just guessing. You can't make any real decisions based on speculation alone.

rustyfox3 said:Please, I need some help here.

A friend of mine went in for a routine physical two months ago, and they discovered a massive polyp in her colon. They moved fast and operated on her a month ago; they had to remove part of her colon, and she ended up with a colostomy bag. The discharge papers were handed to her by a nurse. Absolutely nobody explained the next steps or what this actually means for her life. She even saw the surgeon again, and instead of helping, he practically snapped at her because she hadn't scheduled an appointment with an oncologist yet. I mean, seriously? No one told her she *needed* to see one! How is she supposed to know when she's dealing with this for the first time? Now she's a complete wreck. Her husband is away a lot for work, and she doesn't have kids. She spends most of her days alone, just staring at the TV, and she seems to be sinking deeper into depression. I want to help her, but I'm lost.

Is there an association, a support group, a psychologist, or a psychiatrist specifically for patients? Somewhere they can turn for guidance on how to navigate the system, how to talk to doctors, and how to cope with themselves and the illness?

Thanks in advance.

1. First and foremost, she has her primary care physician or GP who knows this stuff inside and out, and they should have been the ones guiding her through the necessary steps.
2. And honestly, I'm pretty sure it was all written down in those discharge papers.
3. I have no idea how they caught a colon polyp during a routine physical, but the diagnosisa/e on those discharge papers is critical.

vividsailor7 said:1. First things first: you have a primary care physician who knows this stuff inside and out. They should have been the one walking you through exactly what needs to happen.
2. Plus, I’m pretty sure all of this was clearly laid out in the discharge papers.
3. Honestly, I have no idea how they caught a polyp in her large intestine during the checkup, but that's a major part of the diagnosisa/e listed right there in the discharge summary.

I'm with you on this. It is genuinely bizarre that she didn't pick up on anything from those discharge papers and that her GP didn't flag it for her. To me, it feels like there might be some subconscious denial happening here—ignoring the reality just to push the illness aside.
At the end of the day, she needs to step up, be more assertive, and take charge of her health. She also needs actual logistical support from her family and friends—people to actually drive her to appointments and sit in on consultations so nothing gets missed.

vividsailor7 said:The PSA isn't even that high, so I seriously doubt there's anything spreading to the bones.
On top of the tests already suggested, you really need to get a cardiac stress test, CRP, full blood work, a urinalysis, and stool samples checked for blood three times.
Until all that's done, we’re just shooting in the dark here.

They only ran blood work for urea and creatinine, which both came back totally normal.
I honestly don't get why everyone is freaking out about the PSA "rising" when he already had his prostate removed. I know a slight bump in those numbers can be caused by some random inflammatory process, but then again, he isn't dealing with anything else besides these occasional pains in his lower abdomen.

I guess we'll just have to wait and see next week after the CT scan and bone scan are finished.
Thanks for the input.

My Mom hasn't had a primary cancer identified despite all the testing (including a PET-CT scan).
Everything seems to be manifesting as secondary tumors in her liver.
She’s completed 6+3 cycles of a chemotherapy protocol.

I know the situation is serious 😢

What's really bothering me is how much she's bloated right now.
Her stomach looks like she’s expecting twins. She keeps complaining about the pressure, and it's making it hard for her to move around.
We saw the doctor as soon as the swelling started. He just told her it was gas and that it would pass.
He sent us home with some Reglan.

Does anyone have advice on what to do about this bloating?
It’s been going on for about three weeks now, even though her bowel movements are normal and she gets gas occasionally.
Her ankles are swollen, too.

Andrew Cruz3 said:My Mom hasn't had a primary cancer detected despite all the testing (including the PET-CT).
Everything seems to be manifesting in her liver, which shows numerous secondary growths.
She has completed 6+3 cycles of a Chemotherapy protocol.

I am fully aware that the situation is serious 😢

The thing that is weighing on my mind, however, is how incredibly bloated she has become lately.
Her abdomen looks as if she were pregnant with twins—it's quite striking. She complains of intense pressure, and even moving around has become difficult for her.
We saw the doctor as soon as the bloating started. He told her it was just gas and that it would pass.
He sent us home with a prescription for Reglan.

Does anyone have any advice on what to do regarding this bloating?
It has been going on for about three weeks now—her bowel movements are normal, though she does experience occasional gas.
Additionally, her ankles have swollen up.

Has a liver biopsy been performed—specifically on the metastasis in the liver?

Did they perform an abdominal ultrasound once the swelling occurred—just to rule out ascites, or fluid buildup in the abdomen? In those instances, the fluid can actually be drained.

Are her bowel movements regular?
Have they done a plain abdominal X-ray to check if an ileus is developing?
If it truly is just simple bloating, she might try taking Gas-X capsules; they can help resolve intestinal bloating, can be taken alongside other medications, and are available over the counter.

With those liver issues and her regular digestion, the swelling in her abdomen and ankles is a dead giveaway to me. Even to a layman, it’s obvious she’s retaining fluid—that's pretty much standard when dealing with diagnoses like hers, from what I understand. If they haven't run the specific tests > mentioned to rule things out, and Mom has already been discharged, then the doctors have committed a blatant and incredibly unprofessional oversight. You need to get her to the ER right this second; they'll stabilize her immediately by draining the fluid and getting her started on diuretics. This could turn critical fast if that fluid starts pressing against her lungs or heart!

For terminal patients who struggle with constant fluid buildup in the abdomen, there is actually an option to have a specialized catheter placed directly into the abdominal cavity. This allows them to drain the excess fluid themselves at home—which, honestly, saves them from those endless, exhausting trips to the hospital just for drainage procedures.

The doctor is insisting it’s just gas, not fluid. Honestly, looking at it, I think he might be right.
It feels like a balloon about to pop. Just rock hard.

Now,
I’m not sure if an enlarged liver could actually cause this much bloating.
The doctor isn't ordering any tests, which makes me feel like he was already expecting this exact scenario. He seems solely focused on whether my bowel movements are regular. Once I confirm everything is normal, all he does is give me a warning to call him immediately if I miss a day.😕

Andrew Cruz3 said:The doctor insists it's just gas, not fluid. To me, it looks exactly like that.
It feels hard, like a balloon being blown up. Rock hard.

Now,
I’m not sure if an enlarged liver can cause this much bloating.
The doctor isn't ordering any tests, which makes me feel like he was already expecting this exact scenario. He’s solely focused on whether my bowel movements are regular; once I confirm everything is normal, he just tells me to call immediately if things stop moving. 😕

In a situation like this, any diagnosis made without actual testing is just pure guesswork and completely unprofessional. If we're talking about fluid buildup, the abdomen gets rock hard because liquid is accumulating in the peritoneal cavity, and from there, it can leak into the pleural or pericardial spaces—and that's when things turn critical. I already told you what I would do if this were happening to someone close to me. Sunday is actually the perfect day for this, because if you head to the ER, they'll run the tests the doctor skipped.
Since he explicitly said to contact him if bowel movements stop, he clearly left the door open for other possibilities, but it seems easier for him to avoid investigating right now than to send someone home to suffer—especially since he has targets to meet, if you catch my drift regarding his mindset. Tell me, are you perhaps at a major research hospital? They tend to manage patients that way.

Melissa Martinez5 said:My brother-in-law had surgery for throat cancer about a month ago.
He had a laryngectomy—basically they took everything out—so he can't talk anymore...
He’s got a breathing tube in his neck and is still relying on a feeding tube through his nose...
They're supposed to try something else today, not sure what, maybe something to help him swallow, and if all goes well, he might be home in ten days...
Radiation is also scheduled for this month...
Anyone here have experience dealing with patients like this?

Honestly, pretty solid description. Way more detailed than the junk you find when you Google the Mayo Clinic ENT department:
http://www.mayoclinic.org/ent-info#

How did they catch it? Was it just a fluke or were there actual symptoms?

ironranger44 said:I’d say this is actually a pretty solid breakdown—way more detail than what you find when you just Google the ENT department at Johns Hopkins Hospital:

So how did they even find out? Was it just a random discovery, or did symptoms start popping up?

Symptoms definitely showed up—coughing, trouble swallowing, phlegm, and breathing was a struggle...
His primary care doc spent two months treating him for a sore throat... then finally gave him a referral to the hospital, and the second he walked through those doors, they knew exactly what they were dealing with...

We haven't seen the doctor in ages... whenever we drop by, he’s nowhere to be found, so we keep missing each other...
What the doctor told us after the surgery was that he might be able to eat soft foods soon, maybe even harder stuff, but it all depends on how he recovers... It's been quite a while since then, and he's still got a feeding tube in his nose for liquid nutrition...
I just figured there might be someone else here going through the exact same thing...

How'd it go? Anyway, I highly recommend seeing an ENT Specialist at Johns Hopkins Hospital. They don't mess around—they go straight in with a fiberoptic scope, and you actually see everything clearly. And honestly, don't ignore any symptoms, no matter how harmless they seem. For me, they found a cyst in my throat that isn't dangerous right now, but still requires regular check-ups, especially if things take a turn for the worse.

And definitely make sure to catch the doctor. It’s literally their job to answer every single question, even the awkward ones... I mean, I don't want to be a nuisance, but when things get serious, they need to be all ears! 🙂

Melissa Martinez5 said:The symptoms started showing up—coughing, trouble swallowing, fever, and shortness of breath...
His primary care doctor spent two months treating him for a simple sore throat... eventually, she gave him a referral to the hospital, and the second he walked through those doors, they knew exactly what they were dealing with...

We haven't seen his doctor in quite a while... whenever he has appointments, the doctor isn't there, so we just keep missing each other...
What the doctor told us after the surgery was that he might be able to eat soft foods soon, maybe even harder stuff, but honestly, it all depends on how his recovery goes... It’s been a significant amount of time since then, and he's still relying on a nasal feeding tube to get his nutrition...
I figured there might be someone else in this group going through the exact same thing...

For any experiences or advice you can trust, check out here: http://www.larynx-hr.org/america-za...tranica-4.html

Just figured I’d chime in here too. Angela Wright knows me from the forums, and I know her (wiredotter75). I’m currently grinding through month 41 of dealing with colon cancer and peritoneal metastases, plus 3 out of 6 lymph nodes... I won't get into all the gritty details. After 36 months, things progressed following my first line of chemo, so now I'm on my second—and maybe my last—round of FOLFOX. My latest CT scan actually showed a tiny bit of regression, but for the first time, there are slight signs of ascites. I'm pretty sure that means I'm hitting the end of the road, terminal and all. But I gotta ask, has anyone dealt with ascites and managed to hang on for another six months or even a year? Also, is anyone taking Flobian capsules for digestion? My gut is a mess—constant, heavy diarrhea. It's partly the chemo and partly the tumor itself since about a meter of my small intestine is compromised. Nothing really works, not even all those probiotics and stuff; only Pepto-Bismol helps a little sometimes. On top of everything, I caught some virus and I've been coughing for seven days straight with no relief. Took a dose of Amoxicillin and had a fever of 101.4, so the fever's gone but this cough just won't quit. Anyone got an alternative for a cough? Sinupre syrup didn't do squat for me. I’m running out of ideas, especially since the cough gets worse at night and my temp creeps back up to 98.4. I feel like crap, and I need to be 100% by next Wednesday for my session (49 units of FOLFIRI, Avastin, and 5 units of FOLFOX). PEACE TO ALL..

Kevin Bishop10 said:Greetings from Boston!

I just got slammed by my first chemo session on May 18th! I'm only just strong enough today to actually sit down at the computer. Honestly, I'm not sure about what's left:

1. For occult adenocarcinoma (unknown primary), they assigned me an irinotecan + cisplatin chemo regimen—6 cycles, one day on, 21 days off. I haven't been able to find out if this is even the right protocol?!

2. Even though I was given (and took) Zofran tablets for nausea and vomiting, they didn't do squat. Is there anything stronger out there?

3. For the first four days, I couldn't keep anything down—no food, no water, just puking! Does anyone have a tip on how to eat *anything* that actually stays in the stomach?

4. Is there any rule for the second cycle? Does it get easier, or maybe harder?

If you guys have any advice, I could really use it. This hit me hard physically, and I have no idea how I'm going to pull this off five more times!

Thanks and cheers from Boston!

Hey, let me try to answer you. I'm on the FOLFOX protocol for Stage 4 colon cancer. I've done 5 rounds, and before that, it was FOLFIRI + Avastin—49 sessions total. My chemo lasts two days every time; I go in on Thursday and head out Wednesday. Cisplatin is similar to oxaliplatin, and I deal with those same side effects. It takes me about 4 or 5 days before I can even taste food or water again. Also, the spot where they do the chemo in my vein gets super swollen and I feel these tingles—like a billion little stabs all along that 10cm area. Though, I noticed once or twice when they went deeper into the vein, I didn't feel anything at all. As for the vomiting... the first time they switched me to FOLFOX, I threw up like 20 or 30 times. I seriously thought I was dying, haha. When I told the doctor, he looked surprised, like I was part of some tiny 5-10% group that reacts that way. Next time, they gave me Aspirin and since then, the vomiting stopped. My routine goes like this: first, prep with things like Normabel, Tramadol, Dexamethasone, and maybe Pepotran... then comes the oxaliplatin and leucovorin, followed by FU 5 via injection and a 20-hour infusion. Same thing the next day. I hope I didn't miss anything, but Campto and irinotecan were part of the Chemotherapy protocol. Also, oxaliplatin and all those chemo drugs cause these temperature sensations, or this feeling in your chest like you're having a heart attack, stabbing pains, etc. It’s really important to monitor your heart, though weirdly enough, they haven't even done an EKG for me once. Anyway, my advice: try to find something to eat, literally anything. I don't eat much during it and drop like 2 or 3 pounds immediately. Once I'm home, I stick to plain boiled rice or tasteless grains. The main thing is that the food shouldn't have any smell, because I can smell everything 10 to 20 times more intensely than usual, and water tastes sweet to me, which makes me want to puke. I can't taste food, but the smells... man. Everyone reacts to chemo differently. Just hang in there—take comfort in the fact that you only have 6 cycles and then you'll be okay. I'm heading in this Wednesday for my 6th FOLFOX cycle—that's 55 chemos total for me—and there seems to be no end in sight; I'm treating until progression, then I'll go home. I think I met a guy once who did 44 rounds of FOLFOX, which might be a world record, but they had to stop him because his reaction was so bad and the platinum is toxic. Hang in there. Cheers from San Antonio.

What are your thoughts on immunobran? My Mom’s immune system is practically non-existent right now—she’s dealing with inflammation and a low-grade fever, and she's currently on a course of antibiotics. She’s feeling incredibly weak, which is a massive concern because her chemotherapy protocol is scheduled to start in just two weeks. She tried supplementing with beta-glucan and some raw propolis, but honestly, things seem to be heading in the wrong direction regardless...

ruggedmarlin2 said:What do you all think about immunobran? My Mom’s immune system is basically non-existent right now; she’s dealing with inflammation and a low-grade fever. She’s on antibiotics at the moment, feeling pretty weak, and her chemotherapy protocol starts in just two weeks. She tried beta-glucan and native propolis, but honestly, things are just getting worse...

In cases like this, people usually go for heavy doses—like three packets a day. A box of 30 will run you about $100, and whether it actually works? Who knows. I used it more for prevention after my surgery, and I have to admit, it actually helped when I caught that last flu bug. At the end of the day, it's a personal choice. Beta-glucan is definitely the cheaper route.

wiredotter75 said:Just figured I’d jump in here. Angela Wright knows me from the forums, and I know her too. I’m currently grinding through month 41 of dealing with colon cancer and peritoneal metastases, including 3 out of 6 lymph nodes, and so on and so forth—I won't bore you with the medical minutiae. After finishing my first line of chemo, things stayed steady for 36 months, but then we hit a progression on the FOLFIRI + Avastin combo. Now I’m on my second—and potentially last—round of FOLFOX. My latest CT scan showed a slight regression, but for the first time, there are discrete signs of ascites—fluid buildup. That hits hard because I know what that usually signals: terminal status. But I have to ask, has anyone actually lived with ascites for another six months or even a year? Also, regarding Flobian capsules for digestion and bowel issues—is anyone taking them? I need some relief; I’m dealing with constant, heavy diarrhea (partly from the chemo, partly because a meter of my small intestine was removed). Nothing seems to touch it—probiotics, all that stuff—nothing works, though Pepto-Bismol helps occasionally. To make matters worse, I caught a virus and I've been coughing for seven days straight without any relief. I took a dose of Amoxicillin and my fever hit 101.5°F; the fever is gone now, but the cough is relentless. Does anyone have an alternative for a cough? Sinupred syrup did absolutely nothing for me. I’m at a loss for what to take, especially since the coughing gets brutal at night when my temperature creeps back up to 98.4°F. I feel like crap, and I need to be in peak shape by next Wednesday for my 55th chemo session (consisting of 49 rounds of FOLFIRI + Avastin and 5 rounds of FOLFOX). Peace to everyone..

Vedro, I’m so sorry things have taken a turn, but it’s really good to see you back here. Hang in there; honestly, I think you can break all the records because you're one hell of a person.🙂
Check out that herbal pharmacy over by the market near the high school, right by the Maersk building on Tolstoy Street. They should have Syrup. It isn't expensive, and it might help since it coats the mucous membranes and should soothe that cough irritation. You can probably find plenty of other smart remedies there, so it's worth a look.