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Resources and support for families dealing with cancer and serious illness

Started by Angela Wright · · 👁 81 views · 3K replies

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Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#941 ·
Linda Campbell said:I had to cut my vacation short and rush home because my mom just finished her third round of chemo at the hospital. It’s been brutal—she was vomiting constantly and just can't stop spitting out excess saliva and mucus. The vomiting has finally settled down a bit, but she’s still dealing with this heavy buildup of phlegm and spit.
She hasn't eaten a single thing in nine days and is being kept entirely on an IV drip. Her labs are coming back within normal ranges, though. Since they removed her entire stomach, gallbladder, and spleen, we're planning to get an MRI or a CT scan done. She already had X-rays to check the surgical site and her intestines after the operation, and everything looks fine there. I'm wondering, is it possible this is all just a reaction to the chemo? This was the third cycle, and this specific reaction hit about ten days in. Has anyone else dealt with this? Has anyone gone through something similar? Please, I need some advice!

Look, chemo is a poison, plain and simple, and the body is naturally going to fight like hell to purge it. Reactions can get much worse than this, too. It’ll settle down eventually; she just needs to hang in there. I really hope she finds the strength to push through.😳
A Anonymous Veteran
3.6K messages
joined May 2005
#942 ·
Does anyone know what these results mean? She’s currently undergoing radiation treatment—she just hit session 21:
S-alk phosphatase
S-GGT
Transaminase levels are up at 54
Alkaline phosphatase is steadily climbing, from 159 to 165
As is her GGT, which went from 128 to 139

She has some skin redness from the radiation. Her doctors told her she shouldn't apply anything greasy to the area, so does anyone have recommendations on what she can use?
Harold Richardson4 Harold Richardson4 Member
16 messages
joined Nov 2007
#943 ·
Anonymous said:Does anyone here have any insight into what these results actually signify? During the radiation treatment, the count reached 21.
The S-alk phosphatase levels are something we really need to pay attention to. It’s one of those clinical markers that people tend to overlook, much like ignoring a warning light on a dashboard until the entire engine starts smoking. In the context of understanding how certain metabolic processes are functioning, this specific enzyme plays a role that shouldn't be dismissed. It isn't just a random number on a lab report; it's a piece of a much larger, more complex puzzle regarding cellular health and enzymatic activity. We have to look at the data with a sense of scrutiny, rather than just checking a box and moving on.
The S-GGT levels—it’s one of those clinical markers that often feels like a cryptic riddle thrown at you by a physician. To the uninitiated, it looks like nothing more than a string of letters on a lab report, but to those of us staring at the data, it represents a significant window into liver function and biliary health. Think of it like a warning light on a dashboard. In a high-performance vehicle, a single blinking sensor doesn't necessarily mean the entire engine is seizing up, but it serves as a definitive signal that something under the hood requires immediate scrutiny. Similarly, an elevated GGT isn't a diagnosis in itself, but rather a prompt to investigate whether the liver is under stress or if there is an obstruction in the bile ducts. It is a sensitive indicator, often reacting to everything from dietary choices to certain medications, much like how a finely tuned instrument reacts to even the slightest change in humidity. One must look at the broader clinical picture—the full metabolic panel—before jumping to any dramatic conclusions.
An elevation in transaminase levels to 54 is certainly enough to warrant a closer look, though I wouldn't suggest jumping to the most catastrophic conclusions just yet. It is a subtle shift, much like seeing a slight tremor in a steady hand—it signals that something in the system is slightly out of alignment, even if the machine isn't broken. Think of transaminases as internal markers, similar to how a dashboard warning light might flicker in a car. A reading of 54 suggests there is some minor irritation or cellular stress occurring within the liver. It isn't an immediate engine failure, but it is a signal that the environment isn't quite as pristine as it should be. This can be triggered by anything from a recent bout of heavy medication to a period of excessive alcohol consumption or even a lingering viral shadow. In my view, one number in isolation tells us very little about the full picture. It is merely a single data point in a much larger, more complex narrative. To truly understand what this means for your health, you have to weigh this figure against your other lab results, your medical history, and your current lifestyle. One shouldn't ignore it, but one also shouldn't let it trigger unnecessary panic. You need to sit down with your physician to determine whether this is a momentary hiccup or a trend that requires a more strategic intervention.
The alkaline phosphatase levels are continuing their upward trend, moving from 159 to 165.
It follows the exact same pattern as the Gamma GT series, specifically the 128 through 139 range.

It appears she is dealing with skin redness caused by radiation therapy. According to the medical team, applying any kind of heavy, greasy ointment is strictly off-limits right now. This leaves a significant gap in her care—what exactly is she supposed to use to find some relief?

It is supposedly claimed that beta-glucan performs wonders when it comes to managing skin reactions following radiation therapy.
brightgardener8 brightgardener8 Active Member
157 messages
joined Jul 2007
#944 ·
Anonymous said:Does anyone know what these results mean? (During radiation—she’s hit session 21):
S-alk phosphatase
S-GGT
transaminase levels rose to 54
alkaline phosphatase keeps climbing from 159 to 165
as does gamma GT, going from 128 to 139

She's getting red from the radiation—doctors say she can't use any greasy lotions. What should she use?

Look, if it isn't unbearable, maybe just power through those last 9 sessions and then she can slather on whatever she wants. It's totally normal for the skin to get red and sting. We were told the exact same thing—don't put anything on the area while undergoing radiation. If it gets really bad, doctors usually prescribe some specific purple liquid. My mom's skin turned red too, though she didn't get full-on burns, just the tips of her ears started peeling. Once the radiation was finished, she used some kind of green oil—I think it was wheat germ—and some aloe vera cream. She's fine now; no lasting marks on her skin at all.

Linda Campbell, is your mom doing any better😳?
Harold Richardson4 Harold Richardson4 Member
16 messages
joined Nov 2007
#945 ·
brightgardener8 said:If it isn't unbearable, she should just power through those remaining nine sessions; after that, she can apply whatever she likes. Redness and stinging are perfectly standard side effects. We were told the same thing—that nothing should be applied during radiation treatment. If things get truly dire, doctors usually prescribe some sort of specialized purple solution. My mother experienced redness too, though she didn't suffer burns, just some peeling around the tops of her ears. Once the radiation was finished, she used some kind of green oil—I believe it was wheat-based—mixed with aloe vera cream. She’s doing fine now, with no lasting skin issues.

Linda Campbell, how is your mother doing?😳?

She is undergoing the infusion now. She hasn't eaten a single thing in fourteen days, and her overall condition is abysmal. They had to run an MRI because the CT scanner was out of order. There is an excessive amount of free fluid in her abdomen, leading us to suspect a recurrence; word is, she hasn't even responded to that damn chemo (at least according to the unofficial version). It feels as though we have reached the end of the road. I am currently on the verge of a complete nervous breakdown.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#946 ·
Linda Campbell said:She finished her first infusion, hasn't eaten a thing in two weeks, and her overall condition is just terrible. They had to run an MRI because the CT scanner was broken, and there's massive ascites—way too much free fluid in her abdomen. There’s a strong suspicion of a relapse, and word on the street is that the damn chemo didn't even touch it. It feels like we've hit a wall. I am honestly having a nervous breakdown right now.

Honey, hang in there. It isn't over yet. Everything you're learning right now is just data to help the doctors figure out how to actually help her. The reality of the situation hasn't changed since yesterday or the day before; the only difference is that now you finally have a clear picture of what's causing this. Things fluctuate. If things do take the absolute worst turn, there will be plenty of time for the despair and the tears later. Right now, the most important thing is for you to stay steady and keep your eyes on the fight.
I sent you a PM detailing everything else besides a relapse that could be causing that fluid buildup.
Harold Richardson4 Harold Richardson4 Member
16 messages
joined Nov 2007
#947 ·
Angela Wright said:Stay strong, dear; nothing is set in stone just yet. The information you have now is merely a tool to facilitate better care. The reality remains much the same as it was yesterday or the day before; the only difference is that you finally understand the actual cause of her condition. Circumstances fluctuate. Even if the worst-case scenario manifests, there will be plenty of time later for despair and tears. Right now, it is vital that you remain composed and focused on the fight.
I sent you a PM detailing everything besides a recurrence that could cause fluid buildup in the abdomen.

Thank you so much for everything. I am deeply unsettled by the fact that the CT scan failed and why they didn't perform these tests sooner. It is infuriating that she reached such an alarmingly unstable state before anyone intervened—if they had simply ordered an MRI instead, perhaps we wouldn't be here. I don't even understand why the CT equipment malfunctioned, but it feels like a massive oversight. At this point, what can even be done? She manages only three sips of soup or tea all day before throwing it back up. Yesterday, she managed ten steps before retreating to bed. They had every opportunity to run these diagnostics earlier and react proactively, rather than letting her suffer through this ordeal.
brightgardener8 brightgardener8 Active Member
157 messages
joined Jul 2007
#948 ·
Linda Campbell said:... I'm basically having a total nervous breakdown right now

Hang in there; what else is there to say?🙂
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#949 ·
Linda Campbell said:Mila, thank you for everything. It really bothers me that the CT scan failed—why didn't they just get this done sooner? Instead, she’s stuck waiting until her condition becomes incredibly critical. If they had actually listened to us and ordered an MRI, things might be different. I don't understand why the CT failed, but right now, what can we even do? She can barely manage three sips of soup or tea all day before throwing it back up. Yesterday, she managed ten steps before collapsing back into bed. They should have run these tests earlier so they could react properly instead of letting her suffer like this.

Actually, you've got it backwards. An MRI is superior to a CT. It's much more precise; think of a CT scan like looking through a magnifying glass, whereas an MRI is like looking through a microscope. In my opinion, those few days of waiting haven't fundamentally changed the biological situation, though I agree with you that if they'd acted sooner, she wouldn't be struggling so much. But hey, it is what it is, and we move forward. The only thing I can't wrap my head around is why they didn't perform an abdominal ultrasound, because that would have clearly shown the fluid buildup.
Harold Richardson4 Harold Richardson4 Member
16 messages
joined Nov 2007
#950 ·
Does anyone here actually know the procedure for draining free fluid from the abdomen?
Jose Miller3 Jose Miller3 Regular
446 messages
joined Mar 2024
#951 ·
with a puncture 🙂

they just use a bit of local anesthetic, stick the needle in, and let the fluid drain out. depending on how much liquid is sitting in the peritoneum, it can take anywhere from a few minutes up to an hour...

I think they had to do that to my mom about 30 times...
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#952 ·
Linda Campbell said:DOES ANYONE KNOW HOW THEY DRAIN THAT FLUID FROM THE ABDOMEN?

Like I mentioned in my PM, they can also use diuretics like LASIK. My grandfather had heart issues that eventually led to kidney failure, and they basically had to "pump him out." He was flushing out 15 liters of water in a single day.
You'll see that they'll get it under control; the real question is why the fluid is building up in the first place. It doesn't necessarily mean there's a relapse.
Harold Richardson4 Harold Richardson4 Member
16 messages
joined Nov 2007
#953 ·
Rachel Brooks63 said:After 🙂

They administer a bit of local anesthesia, insert the needle, and just let that fluid drain out. Depending on how much liquid is sitting in the peritoneum, the whole process can drag on for up to an hour.

I believe my mother had to undergo that procedure about 30 times.

What was the underlying cause of your mother's free fluid buildup? And more importantly, what was her general clinical status during those drainage sessions?
Jose Miller3 Jose Miller3 Regular
446 messages
joined Mar 2024
#954 ·
Ovarian cancer metastases on the peritoneum.

Her general condition during the paracentesis was actually totally fine—basically the same as it always was... She’d get pretty wiped out sometimes after the procedure, but honestly, we could never tell if that was just from the hospital trips, being stuck there, the drive back home, or if it was just the effect of the drainage itself...

Later on, once she was staying in the hospital full-time, her overall condition took a bit of a dip, but I wouldn't say the procedures were making things worse 🙂
Harold Richardson4 Harold Richardson4 Member
16 messages
joined Nov 2007
#955 ·
Just a brief update for everyone: the results are back, and they confirm a recurrence of the carcinoma right where the stomach was removed. In just four months since the surgery, the mass has grown to 15 cm, and the bile ducts are severely thickened. It’s over. My only hope is that my dearest mother won't have to endure unbearable agony—though, in truth, she is already suffering. I find myself praying that God will take her home to Himself soon, just as He has for all those who suffer. God, are You listening? And now, I have to go visit her and pretend everything is perfectly fine.
PLEASE, dear friends, I am asking for what will likely be my final pieces of advice regarding my own survival—what should I take to stay calm? I need something that provides energy without causing jitters, because quite frankly, I HAVE TO KEEP WORKING. I work for a private employer who possesses zero empathy or understanding, and I have a little boy who is incredibly energetic and tireless; he needs me more than ever. Furthermore, if my mother experiences intense pain (which the hospital might not adequately manage), should I try to sneak medication to her or insist the hospital provide it? I fear she might pass away in terrible pain, or perhaps slip into a coma, much like my late father did when he passed from lung cancer seven years ago.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#956 ·
Linda Campbell said:Just a quick update for everyone: the test results are back, and it’s bad news. The cancer has recurred right at the site where they removed her stomach. Within just four months of the surgery, this thing has grown to 15 cm, and her bile ducts are heavily thickened. That’s it. It’s over. My only hope is that my dearest won't have to endure unbearable agony—though she’s already suffering. I just pray that God takes her to Himself soon, just like He does for all those who suffer. God, are You listening? And now I have to go visit her and pretend everything is perfectly fine.
PLEASE, FRIENDS, I need your help with what will likely be my final pieces of advice for myself—what should I take to stay calm, something to keep me upright while still taking the edge off? Because, obviously, I HAVE TO GO TO WORK. I work for a private employer who has zero empathy for anyone's situation, and I have a little boy who is incredibly energetic and non-stop; he needs me more than ever. Also, if my mother starts experiencing intense pain (in case the hospital doesn't manage it), should I try to sneak her something or demand better care from the hospital? I'm terrified she'll die in excruciating pain or slip into a coma, just like my late father did when he passed away from lung cancer seven years ago.

Honey, I am truly, deeply sorry... I honestly don't even know what to say to you😳. What specifically did the doctors tell you?
Try taking Normabelle at 2 mg. It really helped me. It kind of numbs the edges. If that feels too weak, there are higher doses, but just be aware they might make you drowsy.
For your mom, ask the staff about Durogesic patches for the pain. They are excellent because they release that opioid analgesic gradually, and you can always supplement with Tramali if needed.
Harold Richardson4 Harold Richardson4 Member
16 messages
joined Nov 2007
#957 ·
I’ve noticed a few inquiries popping up here regarding DR. STAKIĆA at CYTOMEDICA. If anyone happens to have firsthand information or data regarding his success rates with cancer treatments, please send me a private message immediately. Word on the street is that his results in treating malignant diseases are nothing short of enviable.
bluewalker30 bluewalker30 Member
26 messages
joined Aug 2007
#958 ·
I’m new here. I haven't had the chance to read through every single thread yet, but I’ve been through the whole gauntlet myself—surgery, chemo, radiation... you name it, I've done it.
Just wanted to drop in, say hi, and wish everyone a lot of strength while fighting this thing. If I can help anyone out by sharing what I've been through, I'll be happy to do it.
Roger Hall15 Roger Hall15 Active Member
107 messages
joined Jul 2003
#959 ·
bluewalker30 said:I’m new here and haven't read through every single thread yet, but I’m one of those people who has gone through surgery, chemo, radiation... and everything else that comes along with the whole ordeal...
I just wanted to drop in and say hello, and to wish you all plenty of strength while fighting this disease, because if my own experience can help even one person, I’ll be happy about it...

Just by showing up and reaching out, you're already helping.👍

How did you manage the skin care during radiation? My mom only had five (or maybe it was six, I lose track) sessions, and her front side is all scraped up—honestly, it's hard to even look at—and her back has these spots that look like she got a massive sunburn right there.
She starts more radiation again this Monday, and I honestly have no clue what I should be rubbing on her. Those chamomile and aloe lotions didn't really do much of anything.
She’s gotten so thin and looks so frail, like a little dried-out twig.
I really don't know how she manages to endure all of this, moving from chemo to radiation and then starting over again, especially being so old.

God, if something like that ever hit me, I wouldn't even bother with treatment. 🙄
I'd be totally screwed.👎
Chris Peterson53 Chris Peterson53 Active Member
114 messages
joined Dec 2010
#960 ·
Angela Wright Asks:
Look, Honestly, that was completely unprofessional of him.Look, those doctors are his actual colleagues—people he works alongside every single day—so trying to undermine someone's professionalism like that is incredibly unfair. You have to remember that doctors are human beings; they make mistakes, and he’s certainly no saint himself. My mother has a brain tumor and was put on Temodal. Generally speaking, almost everyone receives Temodal, but there is an official protocol that is subject to "maneuvering"—if you want to call it that—depending on a doctor's specific experience. For instance, someone else might not receive Temodal exactly the way my mother received it at Rib, simply because her oncologist believed her specific method was the absolute best approach for her case. Since Lilac, my mom has been on Temodal, but under a different protocol; then again, my husband received it differently through Vpava, even though he was treated by the exact same oncologist who treats my mother. It’s exactly as you described—it’s all about the individualized approach. These disagreements regarding a therapy that a doctor presented to you versus what their colleagues suggest? Those are handled during medical board meetings behind closed doors, without patients being dragged into the middle of it. It is frankly terrible to approach a patient this way; it completely erodes the credibility of the healthcare system and doctors, which is already struggling enough due to bureaucracy. In medicine, 1+1 doesn't always equal 2. Similarly, just because one doctor's approach differs from another's—in this case, a highly respected professor—doesn't mean it is inherently wrong or less effective.
Like I’ve already said before—it all comes down to trust and that fundamental sense of security. Based on my own experience, I wouldn't even feel comfortable approaching a person if they acted like that; you just can't feel safe around someone behaving that way. But then again, everyone is different. When you're dealing with cancer, nothing is ever certain. That's just the reality of this disease.

Look, it isn’t unprofessional—it’s just being human. Seriously. Unless you can actually prove they’re doing it on purpose—you know, intentionally undermining a colleague's authority just to boost their own ego for some selfish gain—then don't go throwing around accusations. Sure, it’s bad for the patient. It shakes their confidence and makes them feel less secure, regardless of how the treatment actually turns out. But let’s be real: if you haven't personally sat in on a single medical board meeting, you have absolutely no idea what goes on behind those closed doors. And frankly? It’s probably better that way—especially for the patients.
I’ve been a part of that machine for a long time—and I am calling it exactly what it is.
Let’s be honest—anyone in healthcare, regardless of their specific role, who deals with terminal or critically ill patients on a daily basis starts building a psychological wall almost immediately. It happens unconsciously. You’re constantly facing death and suffering, so you instinctively construct this protective barrier just to survive the shift. Isn't that just human nature?
Can you even begin to imagine the weight they all carry? They’re constantly wading through this endless ocean of suffering and death—dealing with people who are looking to them for miracles and immediate relief, even when performing one is physically impossible. How do you even process that?
Over time, healthcare workers develop these defense mechanisms just to survive—to stay sane while doing their jobs—by distancing themselves from the patient and focusing strictly on the pathology. You take that psychological detachment and add the current state of the American healthcare system to the mix, and you get a pretty grim picture of where things stand today. Sure, there are some who have genuinely lost their sense of humanity—though they aren't the majority—but it happens. They either become completely desensitized through sheer exhaustion, or they’re simply in the wrong profession to begin with—treating a calling like nothing more than a stepping stone for their own careers.
That’s exactly why those who get burned out aren't just the professionals—it’s the ones who tie their entire emotional well-being to their patients. They’re the ones who actually feel everything. personal They need to take full responsibility for every single patient who walks through their doors asking for help—instead of constantly trying to shift that burden onto everyone else. Why can't they just own it?

This entire thread is nothing more than a mirror—a reflection of how human relationships have shifted over the last few decades. It’s all right here.
It used to be that people actually died surrounded by their families—often with several generations all gathered in one room. That kind of presence provided real comfort to the dying, not to mention the immense strength and support it gave to those left behind. People passed away in their own beds, in their own homes. Even if they had been in a hospital for a time, their families almost always made sure to bring them back home to die among their own people, under their own roof.
There was always someone there—even if it was just a neighbor. No one was ever left to face it alone, day or night.
The sheer density of family ties and community support—neighbors, acquaintances, everyone being tight-knit and ready to step up in a crisis—made all the difference. Because let’s be honest: having a physical presence is often more vital than any medication meant to dull the pain. And the kids? They were part of that circle, too.
But then came the isolation. By breaking families down into disconnected individuals, we lost all of that. We started dehumanizing death and the dying process, starting as early as childhood. This led to all these official—and unofficial—theories claiming we shouldn't "burden" children by letting them confront illness or mortality. Of course, you don't expose young children to these things, but today, this logic is applied even to older kids who are given rights in every other area, except the right to actually understand and develop a healthy relationship with mortality (and the reality of suffering).
Nowadays, both the dying and their loved ones are left to fend for themselves. The elderly and those nearing the end are simply sent off to "institutions to write off"—take a place like N. Marof, for example.
And as I've said before, there isn't even professional support available. Not for those passing away, and certainly not for those left behind. That kind of help is absolutely essential. In a way, this thread—this exchange of thoughts and lived experiences—is a shadow of what those large, supportive families used to be.

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