Support resources for families dealing with cancer and other serious illnesses

Look, you know I’ve already gone down that rabbit hole. 😢 I’m just incredibly on edge because of everything going on with Mom, so I’m trying to help her out any way I can.
I won't keep bugging you guys. It really means a lot having you here. 🙂

stormyfalcon6 said:Look, you know I’ve already considered that. 😢 I’m incredibly sensitive right now because of everything going on with Mom, so I’m just trying to help her any way I can.
I won't bug you guys about it anymore. It really means a lot that you're here for me. 🙂

The best move is to just give her the facts and let her make her own calls. People like that can literally drain the life out of you if you let them. You've already dealt with enough regarding your own Mom; there's no reason to put yourself through that cycle all over again. She's your mother-in-law, not your mother.

wiredotter75 said:Has anyone dealt with ascites and managed to live another six months or even a year?? Also, regarding Flobian capsules for digestion—is anyone actually taking them? I need some relief because my digestion is a mess; I'm dealing with constant, heavy diarrhea (partly from the chemo, partly from my gut since a meter of my small intestine is basically out of commission). Nothing works! All these probiotics and supplements do nothing; only Smalltown helps occasionally... On top of that, I caught a virus and I've been coughing for seven days straight with no end in sight. After a dose of Amoxicillin, I'm sitting at a fever of 101.2 F right now (currently on 49 Folferi, Avastin, and 5 FOLFOX). HELLO TO EVERYONE OUT THERE..

Honestly, the diarrhea doesn't surprise me one bit. During chemo, they can prescribe Ondansetron, which can help curb the diarrhea (it suppresses urgency and slows things down through the small and large intestines, so it should ease the symptoms), plus you can stick with Smalltown like you have been.
It’s unlikely you’ll find much magic here, but regarding the ascites, she really needs an abdominal ultrasound and CT scan focusing on the liver (to check for portal hypertension), a liver function test, CRP, ALP, Bilirubin, and electrolytes like Potassium and Sodium. They also need to look for signs of esophageal or gastric varices via endoscopy/EGD. If those are present, they might start prophylaxis with Propranolol 2 x40 if she can tolerate it.

Andrew Cruz3 said:I followed the advice and took Mom to the ER on Monday.
But man, that fluid is 😠
They drained 5 liters of fluid and told us they couldn't take any more.
She was feeling okay regarding the bloating until this afternoon.
Now she's swollen up again. 😢
I expected this, and I told the doctor that the swelling would likely persist longer before the next bout of bloating/swelling, rather than coming back this fast.

It looks like she hasn't been properly evaluated. What really needs to happen is an abdominal ultrasound,
an X-ray of the abdomen, maybe a follow-up X-ray, and potentially an EGD. She needs a CBC, CRP, AST, ALT, GGT, ALP, K, Na, and Bilirubin checked.
Depending on those results, they can introduce appropriate therapy—for example, Lasix, Spironolactone/Aldactone, NSBB/Propranolol prophylaxis, or ACE inhibitors like Ramipril. If she can't handle the last two, they could try more selective beta-blockers like Carvedilol or an ARB like Valsartan.

stormyfalcon6 said:I'm begging you all—if anyone understands these results, please explain what's going on in plain English. We have a doctor's appointment this Wednesday. We know things aren't good, but we just don't know exactly *what* is happening. 😢

stormyfalcon6 said:Look, I’ll include the lab results from February here too. The surgery—a Whipple procedure—happened at the start of December. The surgeon insisted they got everything out. He was actually on the fence about whether chemo was even necessary, but he eventually signed off on it. That previous report is from February, right before she started treatment. Since then, she’s gone through two cycles. I’m not entirely sure which specific drugs were used, but it looks like a preventative regimen.

The results point toward progression of the primary disease and
local recurrence, along with liver metastasis, peritoneal effusion,
and ascites.
At this stage, care would be palliative—meaning diuretics or maybe a paracentesis.

Thanks, Dr. Hrvoje. You shared so much info that everything I tried googling couldn't even touch. I guess my oncologist will figure it out; he seems pretty solid, but whatever. This is the last CT from April 10, 2013, now on FOLFOX..
And this was the one before last, when they switched me off FOLFIRI + AVASTIN..

I’ve got about 15 CT scans total. Plus five PET scans, so I’m basically radioactive—I probably glow in the dark sometimes 🙂 ,,please don't scare me with the response. I know I'm a walking zombie if there's no cure, but I still hold onto hope for a miracle. THANKS AND BEST
I don't take many pills. Just maybe one Smalltown during the first two or three days after chemo. I get about 20 bouts of diarrhea, but I don't head to the ER; I just try to survive it. I'll take a Doret to help for those first couple of days, and maybe some Xanax more often because sleep is hard to come by. Otherwise, I stay away from most stuff. I take beta-glucan, and lately, I've been doing spirulina, but before that, I was regular with royal jelly. Propolis is a must, plus some aronia, and that's pretty much it. I eat normally—I even hit up McDonald's once a month. Mostly I'm fine, except a virus hit me in the last 15 days, so I've got this cough. Now everyone wants to play doctor; they actually told me I have fluid in my lungs and that's why I'm coughing, haha. It's really just a throat infection and a cough. I've got chemo next week though, so I'm worried they might not let me in... so yeah, that's me in a nutshell. And this is my PET scan from Feb 2010, right when I started chemo after surgery..

I guess it doesn't matter what you guys say, I truly believe I'm going to beat this.... and there'll be a miracle. This is the pathology report from after the surgery, Jan 5, 2010..

vividsailor7 said:...

It’s pretty obvious they didn't follow through on the necessary steps. They really should have ordered an abdominal ultrasound,
an abdominal X-ray, a post-procedure X-ray, an EGD, plus blood work like CBC, CRP, AST, ALT, GGT, ALP, Potassium, Sodium, and Bilirubin.
Depending on what those results show, treatment might include things like Lasix, Spironolactone/Aldactone, NSBB/Propranolol prophylaxis, or ACE inhibitors/Ramipril. If she can't handle the last two, they could try more selective beta-blockers like Carvedilol or maybe an ARB like Valsartan.

...

The ER ran some tests, I just don't happen to know which ones. 🤷
She was actually in the hospital for checkups about two months ago, and they told her everything looked fine except for her liver, though even that was considered "satisfactory."
I get the feeling her doctor isn't expecting much and has basically washed his hands of the whole thing. 🙂
He isn't prescribing anything. The last time we saw him, he sent us home with just Reglan and some talk about gas in her abdomen.
Then, when I called him during office hours, he just pointed me toward the ER, where they were the first ones to mention ascites.

Andrew Cruz3 Asks:
Well, they ran some kind of tests at the ER, but unfortunately, I have no clue exactly what they were looking for. 🤷
A couple of months back, she spent a few days in the hospital for some checkups. They told her everything was looking fine, except for her liver, though they even noted that those results were actually quite satisfactory.
I get the feeling her doctor isn't expecting anything anymore and has just completely washed his hands of the whole situation. 🙂
They aren't giving her any kind of actual therapy. The last thing they did was discharge us with nothing but some Reglan and a vague explanation about gas in her abdomen.
When I called him during business hours, he just told me to head straight to the ER—that’s where they first mentioned the water issue to me.

Look, just take that ER paperwork straight to him. Be blunt. Tell him point-blank that you want him to focus entirely on palliative care. Ask him if he honestly believes continuing the current path makes any sense, and if he thinks it’s more professional to refer her to someone else who actually specializes in providing that kind of end-of-life support. Do it assertively—be direct, like a surgeon with a scalpel. Don't let an ounce of accusation creep into your voice; if you sound like you're blaming him, he'll shut down. If you stay calm and firm, he’ll be caught completely off guard. Most of these doctors just aren't used to being spoken to that way.
I’m going to be straight with you: you really should consider looking into placing Mom in a facility where she can get professional, specialized care. There are private assisted living centers out there that do an incredible job. I actually lost a close friend recently to a brain tumor at age 36, and during those final months, they were in a top-tier facility that made a world of difference. If you want, I can look into the exact names of the places I know and let you know.

Dad's back at the hospital today for some checkups. He seems fine otherwise, actually acting pretty normal. It’s just that he started coughing again, and when he sits down to eat, he says it feels like that first bite gets stuck, making it impossible to keep going. This has been happening for a few days now. I'm hoping it isn't what I think it might be. I guess I'm just crossing my fingers that it's something else, something not too serious...

Nothing but bad news on our end. According to the doctor, things are actually looking worse than they were before the surgery. 😢 They aren't going to give her any therapy at all because her Bilirubin levels are climbing. She’s heading back in for more tests in ten days. Since it's spiking because of what's happening with her liver, is there even any hope it'll drop?! It was around 60 last week, and now it's hit 73. And honestly, we can't wrap our heads around why high Bilirubin is such a dealbreaker for chemo. What would happen if she actually took it?

stormyfalcon6 said:We have zero good news over here. According to the doctor, things are looking even worse than they did before the surgery. 😢 They aren't going to give her any therapy because her Bilirubin levels are climbing. She’s headed back for more tests in ten days. Since it's rising due to what's happening with her liver, is there even any hope it will drop?! It was around 60 last week, and now it's hit 73. We also can't wrap our heads around why high Bilirubin interferes with chemo. What would actually happen if she went through with it?

A rising Bilirubin level is a massive red flag that the liver is starting to fail. For chemotherapy to work, the liver needs to be strong enough to process and filter out all that toxic sludge. In her case, pushing chemo would be catastrophic—it would likely kill her on the spot. 😢 Unfortunately, Mom is in the terminal stage now, so palliative care and pain management are the only paths left. The goal is just to improve her quality of life and squeeze out every possible moment she has left. I'm just heartbroken. 😢

Let's just assume that's the case. 😢 So what now? How do we actually make the most of the time we have left?

stormyfalcon6 said:That was just an assumption. 😢 So what’s the move now? How do we make every single second count?

The priority right now is setting up palliative care—making sure she stays nourished, hydrated, comfortable, and clean, and most importantly, pain-free. Ideally, we’d want to manage all of this at home, where she can be surrounded by family and the comforts of her normal routine. I really hope her primary care physician is top-notch, because so much of this process is going to hinge on their guidance.

The doctor isn't exactly the strategic type, so I'm just praying she actually knows how to handle this mess. Thanks a million! Seriously, you have more patience than all of us combined. 🙂

Yeah, count me in too, unfortunately... this thread is basically everyone's worst nightmare.

Three weeks ago, Dad got hit with a lung and bronchial cancer diagnosis. He was stuck in the hospital for a bronchoscopy and a chest CT... they found some small metastases on his kidney and one vertebra. They just tossed us back and forth between an oncologist and a urologist to figure out what to do about the kidney situation. The oncologist said we should go the palliative chemo route, but the urologist thinks what he sees is small enough to be operable—though he also muttered that it might not even make sense to bother since the fight should really be focused on the lungs. (He casually mentioned it’d be smart to get a head CT to see if anything is going on up there... obviously, we’d be waiting months at the hospital for that, so we ended up paying for it privately...) And yeah, turns out there is a tiny growth in his head, but apparently, it’s not causing issues right now. Fast forward to today: we were supposed to start chemo. We show up with all the paperwork, and suddenly the oncologist tells us chemo is pointless if it weakens him this much, because once his immune system tanks, they won't be able to touch the stuff in his brain.
IT'S ENOUGH TO DRIVE YOU INSANE!!!.. If we hadn't done that CT privately, who would have ever known???!!!
So now we're just driving back and forth to 68 miles Cleveland for all these tests, something new every other day, and then today they drop this on us..
The oncologist suggested the Mayo Clinic for radiation, maybe Gamma Knife, based on what I gathered from talking to my sister (she was over in neurosurgery at the Mayo Clinic)... But there's no room for him. One doctor is on vacation, and the next one can't take him for another 15 days. Then some lovely nurse tells us we should at least drop off all the medical records in the morning so the doctor can look them over and decide if he needs an MRI. !!!
If he needs it, he needs it, the doctor said... but in Cleveland, getting that done takes way too much time that he just doesn't have, and doing it privately is insanely expensive. So they "kindly" sent us toward the Mayo Clinic, saying it's a good shot—if they can handle the brain issue there, he might be able to continue with other types of radiation back in Cleveland, provided he handles the chemo okay.
And so, they just keep running us in circles... The whole family is at a breaking point, and I've got two little ones at home (one's turning one soon, the other just turned three).

I don't even know how to feel anymore. I don't know where to look for advice or who to turn to..
"It feels like I'm just drifting in a vacuum."
Just when we think there's a glimmer of hope, someone suggests it's all just a mess and that maybe we should just let him live out whatever time he has left..

Angela Wright said:It doesn't necessarily mean she's weak; rather, that kind of attitude toward the outside world is a sort of defense mechanism. You know, they love to dramatize things and act out, but deep down, they truly want to get better. My Mom was just like that.

This is one hundred percent spot on. Take my Grandma, for example—she complains and accepts help, but then operates on this principle of "poor me," sometimes even refusing assistance just so she can stay the protagonist in her own little drama.
Since all of this weighs heavily on me, I’ve had to create some distance because the negativity was starting to take a toll. Ironically, since getting sick, I’ve actually become my own top priority. I am fighting for myself the best way I know how; it's my life, after all. She gets to decide how to live hers, too. I found a method that works: every time she would start overwhelming me with how miserable she was and how much I was hurting her, I would simply "cut her off." Once she realized she couldn't play those games with me like she does with everyone else, the constant whining started happening less and less. It sounds harsh, I know, but like I said, I have to put myself first.

As for my brain tumor... well, it's gone. 🙂
I’ve had my checkups, and the MRI looks good. Since it's been five years now, I'll just go once a year for monitoring. This whole process drove me crazy twice before, constantly hanging around hospitals every single time. Plus, I still need to deal with that hollow feeling in my ear. I'm setting up an appointment with an ENT surgeon in about ten days.

Looking back after five years, I can say that the tumor and the fight for my life actually brought a lot of good things with them. I discovered parts of myself I didn't even know existed and realized certain (crucial, I believe) truths about life. I'm still putting the "puzzle pieces" of my mind together, but I finally feel—regardless of any psychiatric "depressive episodes"—that I'm moving in the right direction. I've realized just how much impact the mind alone has on quality of life, specifically regarding the alignment of conscious and subconscious thought. When I think about who I used to be, it's no wonder I ended up where I am. ☕

And it really is true: help yourself, and God will help you.
There’s one more thing I wanted to mention. It's such a shame that doctors who provide actual emotional support—even just through a few words—are so rare. During my darkest moments, I often thought back to what my former oncologist (who is retired now) told me. When I asked him about the prognosis for my specific type of tumor, he simply looked at me and said, "You're a fighter; you're going to make it."
I will never forget that. I only wish I had seen him before he retired so I could thank him personally for those words. That happened during my second round of chemo, back when I was scrambling to scrape money together for Temodal. It just goes to show: a few words mean everything when they are spoken sincerely and at the exact right moment. 🙂

I'm sorry this topic is so somber and heavy, but I truly admire you, Angela, for your desire and persistence in trying to help others. 🙏🙏🙏

Well, here I am again... I’ve been doing a bit of digging online—and I have to ask—is Imuno Power actually significantly better than Imunobran?

Svrkar’s gonna have to deal with radiation and chemo because of that throat cancer...
The doctor mentioned something about him maybe being eligible for free medical transport...
Now I'm wondering if that rule still only applies to people living far away from 31 miles, or if it's changed since the Secretary promised an update recently??

swiftpanther102 said:Unfortunately, I’m joining the ranks here because this topic is clearly everyone's worst nightmare...

Three weeks ago, my Dad was diagnosed with lung and bronchial cancer. He went into the hospital for a bronchoscopy and a chest CT... they found minor metastases on his kidney and one vertebra. They just sent us off to an oncologist and a urologist to let them weigh in on the kidney situation. The oncologist said he’d go on palliative chemo, but the urologist thinks what he sees is small enough to be operable—though he also mentioned it might be pointless and we should just focus on fighting the stuff in the lungs. (He casually mentioned it would be smart to get a head CT to see if anything is going on up there... obviously, we’d be waiting months at the hospital, so we did it privately.) And yeah, there is a tiny growth in his head, but apparently, it isn't causing any issues right now... We were supposed to start chemo today, we brought all the paperwork, and then—get this—the oncologist tells us chemo is pointless if it weakens him too much, because once his immunity drops, there will be nothing we can do about the growth in his brain...
IT’S ENOUGH TO DRIVE YOU INSANE!!!.. If we hadn't done that CT privately, who would have even known???!!!
And so, we spend our time 68 miles driving back and forth to Cleveland for all these tests, something new every other day, and then today they hit us with this...
The oncologist recommended the Mayo Clinic for radiation, specifically Gamma Knife, based on what my sister heard from the neurosurgery department there. But there's no room for him; one doctor is on vacation, and the next won't be available for another 15 days. A lovely nurse suggested we just drop off all the medical records in the morning so the doctor can look them over and decide if he needs an MRI... !!!
He does need one, the doctor said... but in Cleveland, the wait times are massive, and doing it privately is incredibly expensive. So, they "kindly" pointed us toward the Mayo Clinic, saying it's a good shot—if they can treat the brain issue there, he could potentially continue with other types of radiation in Cleveland later, provided he handles the chemo well.
They're just running us in circles... Everyone in the family is at their breaking point, and I have two little ones at home (one is turning a year old, the other just turned three).

I don't even know how to feel anymore, where to look for advice, or who to turn to...
"I'm just stuck in a vacuum."
Just when we think there's a glimmer of hope, someone suggests it's all just noise and that we should just let him live out whatever time he has left...

swiftpanther102, hang in there for the Gamma Knife; 15 days isn't a huge deal considering how much it could help him.
Unfortunately, everything you're going through is part of the inevitable package deal that comes with a diagnosis in our healthcare system. There’s no sense in spiraling over it, because it just drains the energy you desperately need for the fight and for daily life. You have to accept these hurdles as unavoidable and just deal with things as they come. There really is no other way.
As for the disease itself and how it progresses, I think it’s been clear to all of you from the start—you’ve likely researched this online—what we're dealing with. It’s hard to talk about a "cure" here, but extending the quality of life is definitely possible, so you absolutely have to push for every single option to manage the situation.

Melissa Martinez5 said:Svrkar’s gonna have to deal with radiation and chemo because of that throat cancer...
The doctor mentioned something about him maybe being eligible for free medical transport...
Now I'm wondering if that rule still only applies to people living far away from 31 miles since the Secretary recently promised to change it??

We’re at least 90 miles away from everything62 miles and nobody ever even brought up medical transport to us, no matter what was going on..

swiftpanther102 said:We’re at least 90% removed from everything.62 miles And nobody bothered to mention medical transport in relation to any of this...

That’s exactly where the issue lies—nobody is going to volunteer any information to you; you have to go out and hunt for everything yourself. Honestly, this is the kind of thing your primary care physician should have been upfront about from the start.
So, everyone who’s more than... 31 miles Regarding medical transport, they are entitled to have their travel to the hospital covered by Medicare.

Angela Wright said:He’s sitting there with that ER paperwork, being totally upfront about wanting palliative care. He's basically asking if, professionally speaking, it makes sense to pursue that route, and he's looking for guidance on how to approach someone else who might be willing to provide that kind of specialized care. If he approaches this assertively—just straight talk, no blame in his voice—he’ll probably just leave them stunned. Most doctors aren't used to being communicated with like that.
I'll be blunt: you should really look into moving Mom to a residential facility that specializes in this kind of care. There are private facilities that do an incredible job. I recently lost a friend to a brain tumor at age 36, and they spent their final months in a top-tier facility. I can look up the specific names for you if you want.

The thing is, he’s ready for palliative care, but we aren't.
Maybe I don't fully grasp what that entails, but our heart is set on keeping Mom at home for as long as humanly possible.

We were back at the ER again today for fluid drainage (it was a 12-hour ordeal this time 😠). They ran more tests
than last time, but once again, we walked away without any real answers. All I have is the discharge summary.
Is there a way to pay for these drainage procedures privately, so we aren't stuck waiting in an ER for 12+ hours every single time?
On top of that, the fluid just keeps coming back within a day or two, even though they told us it would take much longer to build up—maybe days or even weeks.
Does anyone know how to stop or at least slow down this fluid buildup?

How can I make things easier for her?