Support for families dealing with cancer and other serious illnesses (Part II)

It’s just one of those long, anxious waits now, sitting around hoping we actually get the green light for a biopsy after the consultation, and then once we have that info, we can finally figure out our next move and make a real decision on the spot.

Jane,

What’s your take on the Megacomplex from that Megamin company out of Washington, D.C.? I saw some stuff online saying they include zeolite alongside the bee products—but I’ve been staring at this bottle and I honestly don't see zeolite listed anywhere in the ingredients... maybe I'm just missing it? Anyway, what kind of dose do you think would actually do anything for my immune system?

Emily Martinez61 said:Jane,

What’s your take on the Megacomplex from the Megamin company out of Washington, D.C.? Aside from the bee products mentioned online, I read somewhere that it contains zeolite, but I can't find any mention of zeolite on the label itself. What kind of dosage do you think would actually do something for my immune system?

I haven't messed with that before. You might want to ask someone in the holistic health circles.

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Thanks. I'll give it a shot...

I’m so sorry if I’m totally off-topic here!

Back in June, my dad was diagnosed with stomach cancer. We feel lucky it was caught early on, so they started with chemotherapy, which managed to shrink it a bit. The doctor suggested that to be on the safe side, he should have surgery to remove his entire stomach. His CT scan after the operation showed there were still two lymph nodes involved, but we’re hoping chemotherapy can handle that. He had the surgery in October, where they connected his small intestine directly to his esophagus. At first, he could manage soft or pureed foods, but for this past month, he hasn't been able to eat anything at all because it feels like everything just gets stuck in his intestines. It isn't just food, either—even if he just drinks water, it gets stuck, and then after a while, it all just rushes through him. He went to see the doctor, who referred him for a gastroscopy, but the results came back completely clear with no obstructions found in the digestive tract. I guess, has anyone else dealt with something similar? Thanks so much.

Paul Scott74 said:I want to apologize upfront if I’m totally off-topic here!

My dad was diagnosed with stomach cancer back in June. Luckily, we caught it early, so they started with chemotherapy which managed to shrink things down a bit. His doctor suggested that to be on the safe side, he should undergo surgery to have his entire stomach removed. A follow-up CT scan after the operation showed two remaining lymph nodes, but the doctors mentioned that can be handled with more chemo. He had the surgery in October, where they connected his small intestine directly to his esophagus. At first, he could manage soft or pureed foods, but for the last month, he hasn't been able to eat anything at all. It feels like everything just gets stuck in his intestines—not just food, but even water. After a little while, it all just rushes through him. He went to see his doctor, who sent him for a gastroscopy, but the results came back completely clear; there aren't any physical obstructions in the digestive tract. Has anyone else dealt with something similar? Thanks

Look, I don't have much firsthand experience with stomach cancer specifically, but I’ve certainly dealt with my fair share of digestive issues. I’m currently on Docetaxel, and the diarrhea and vomiting are absolutely brutal. For me, what really helps is using aerated green clay and psyllium husk flakes—you can pick both up at any local pharmacy. Before I tried those, I was using Enteros gel and various probiotics. My best advice would be to check with his medical team to see if any of those options would be safe for him to try.

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Hi everyone on this thread

My mom has lung cancer that has spread to her esophagus, abdominal lymph nodes, and bones (at least, that’s what we know), and she's in a terminal stage. For a few days now, I’ve noticed the right side of her abdomen is quite swollen and feels harder when I touch it. She’s also complaining about shortness of breath—though the primary lung tumor was surgically removed, so I doubt that's the cause—as well as feeling bloated, like she swallowed something huge when she hasn't...

I'm wondering if this could be fluid buildup in the abdomen (ascites)? Her feet and fingers have been slightly swollen over the last few days, too. I've been reading about this online, and it seems like in some cancers, this signals the end is near... should we be preparing ourselves? On top of that, her pain is worsening rapidly; every 3 to 6 days, we have to increase the dose of her pain patches and other medications just to keep up. If she isn't in pain, she’s just sleeping, and she’s lost a lot of weight. Last night, she became confused and didn't even recognize me as her daughter... I'm terrified this might be related to her liver.

I really don't want to put her through the agony of hospital trips if it’s truly not necessary, because that’s what she fears most, so I decided to check here first... Thanks

urbanharbor15 said:Hey everyone in this thread

My mom is fighting lung cancer that has spread to her esophagus, abdominal lymph nodes, and bones (at least, that’s what we know), so she's in a terminal stage. For a few days now, I've noticed the right side of her abdomen is quite swollen and feels much firmer to the touch. She mentioned her breathing is getting worse—though they did surgically remove the primary lung tumor, so I'm not sure if that's related—and she also has this sensation of bloating, almost like she swallowed something huge when she hasn't.

I'm wondering if this could be fluid buildup in the abdomen (ascites)? Her feet and fingers have also been slightly swollen over the last couple of days. Reading about this online makes it look like, in certain cancers, this can signal that the end is approaching; should we be preparing ourselves? On top of that, Mom's pain is escalating rapidly (every 3-6 days we have to increase the dosage of her pain patches and other meds), and if she isn't in pain, she's just sleeping, and she's lost quite a bit of weight. Last night, she got confused and didn't even recognize me as her daughter, which has me terrified—could this be related to liver issues?

I really don't want to put her through the ordeal of hospital trips if it isn't absolutely necessary because that's what she fears most, so I figured I'd check here first... Thanks.

Hi there,

I am so incredibly sorry you're going through this....
It's hard to draw any firm conclusions based solely on what you've described.
I'm not sure if Mom is currently undergoing any specific treatment? If she is, the best move is to just ask her oncologist everything you're worried about during her next session. Free fluid in the abdomen can be spotted via an ultrasound, and you don't usually need a long hospital stay for that kind of scan.

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Michelle Perez40 said:Hi there,

I am so incredibly sorry you're going through this....
It’s hard to draw any real conclusions from what you've shared here.
I'm not sure if Mom is currently undergoing any active treatment? If she is, then just ask the oncologist everything that's unclear during her next session. They can see free fluid in the abdomen via ultrasound, and you don't need a long hospital stay for that kind of scan.

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Thanks for getting back to me...

No, she isn't on active treatment anymore since the disease progressed while she was still doing chemo... So, all care now is strictly palliative, mostly focused on pain management.

I don't think an abdominal ultrasound is even an option right now. Her condition is such that she’s bedridden 90% of the time; we had to call an ambulance just to get her moved when it became critical. We haven't even bothered with more CT scans because there's no point... the strain of just getting her to the hospital would be too much. I guess I was just wondering if that fluid could be water—since people always say that when fluid builds up in the lungs or abdomen, it's a bad sign, like it's pointing toward the end?

urbanharbor15 said:Thanks for getting back to me...

No, Mom isn't receiving any more active treatment since the disease progressed during her chemo rounds... So everything she’s getting now is strictly palliative, mostly just focused on managing her pain.

I don't think an abdominal ultrasound is even on the table right now; her condition is such that she’s bedridden about 90% of the time. We had to call an ambulance just to get her moved when things got critical, and we aren't even bothering with CT scans anymore because there's really no point—the sheer effort of getting her to the hospital would be too much for her. I was mainly wondering if the fluid could just be water, because you always hear that when fluid builds up in the lungs or abdomen, it's a bad sign, like it's pointing toward a terminal outcome?

I actually have fluid in my own lungs, and I've been living with pleural effusion for eight months now. I also dealt with pericardial effusion—fluid around the heart—but that eventually cleared up. What I'm trying to say is that these kinds of effusions don't necessarily have to be a definitive omen of the worst. The real issue is how much fluid is accumulating; the more it builds up, the more serious the situation becomes because it puts more strain on the organs involved.

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Just wanted to offer a little bit of comfort regarding the fluid in the lungs situation. My dad went through a massive heart surgery about eight years ago, and ever since then, he’s been dealing with constant fluid buildup—it's just one of those things he lives with now. Because of it, he can't really sleep flat; he either has to prop himself up with pillows or stay strictly on his left side to breathe easier. He gets winded pretty quickly, too, but hey—he's still here and hanging in there. He’s on a heavy regimen of diuretics, which keeps things relatively under control for the most part. Honestly, though, I never quite know where the line is when it comes to managing that much fluid.

Michelle Cook83 said:Dana Martin87, is the wound still oozing anything or is it dry now? Regarding the catheter, there's a chance some nerves near the bladder might have been nicked during surgery, which would mean a longer recovery period. It’s crucial to change the catheter regularly and drink plenty of fluids; maybe take a urinary tract supplement too, since having a catheter increases the risk of a UTI.

Man, I honestly don't know, I'll have to ask him. He goes in for dressing changes regularly. As for the catheter—great news, they finally pulled it out! 👍

Angela Wright said:Try Dermazin ointment. Honestly, anything with silver ions speeds up the healing process.
Regarding the catheter—is the issue that he can't hold it, or is nothing coming out at all?

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Thanks for the tip, we'll give it a shot. 🙂

They pulled the catheter out,🎉 but the real struggle was that he had zero sensation and would just leak a few drops every couple of hours. And

Here I am, still processing everything...

I haven't quite recovered from it all yet—the nights are still the hardest part. I can't stop seeing those images when I close my eyes, and the weight of the illness and death just stays on my mind 24/7...

What I’ve realized now is that his neurologist never even prescribed antibiotics for the pneumonia, despite repeated RTG scans showing inflammation and blood test results confirming an infection. They didn't even give him a transfusion; it honestly felt like they treated him more like an animal than a human being and just left him to die...

Now, I'm waiting for next week, and then I'm heading straight to the clinic to confront her and demand answers. She is the only one who can explain why she discontinued the antibiotics, and I’ll likely be looking into filing a formal complaint with the medical board...

It's just horrific, regardless of how you look at it. But I’m hoping that once I finally get the answers I deserve, I can finally find some closure and move forward...

neonbear69 said:Hi everyone. If you have a loved one currently fighting or who has previously battled glioblastoma, please reach out via DM. I’d love to share some advice and connect—I would be so incredibly grateful for any guidance you can offer. Best.

Check your PMs

ruggedfox11 said:Here’s where I am after all this time...

If I haven't fully recovered from everything yet—the nights are still the absolute worst, seeing those images burned into my eyes, with sickness and death constantly playing on loop in my mind 24/7...

What I finally realized is that his neurologist never even gave him antibiotics for the pneumonia, despite repeated RTGs showing inflammation and blood tests confirming it, nor did they provide a transfusion; they basically treated him like an animal and just left him to die...

Now I'm waiting for next week, then I'm going to march right into the clinic to demand answers, because she's the only one who can explain why she pulled the antibiotics. I'll likely be looking into filing a formal complaint with the medical board...

It's horrific regardless, but I'm hoping that once I get my answers, I can finally put a period at the end of this sentence and move forward...

Did you go?
Think long and hard about whether there's actually any point, because you might walk away with insights that only disturb you deeper and turn your life into total chaos. You might feel the urge to file a lawsuit, but given the state of our legal system and the massive doctor shortage in this country, plus how much of a joke the medical boards can be, I fear you'll only end up hurting yourself. You won't find satisfaction or justice, and it won't bring him back. Just look at how that mascara situation ended up.

Here is my honest, detached perspective on the whole thing:
Objectively speaking, your husband was incredibly ill. In the situation he was in, you were fighting for even a shred of quality of life, which was nothing short of miraculous and set an example for others. A full remission would have been a literal miracle. If they took away some time from him by withholding those antibiotics, then that was simply more time lost. Ultimately, he died because of that damn diagnosis that put him in that state in the first place.
Those are the facts. No matter how much it hurts, and no matter how badly we want to pin the blame on someone—because for some irrational reason, it feels like having a villain makes the situation easier to handle—that is the brutal reality.

Focus on yourself. Go do the things you two dreamed of doing together. Keep moving. You have to. It's easier to accept it this way than to stay stuck in one place while life pushes you forward by sheer inertia and you're just slamming your head against a wall. And don't you dare blame yourself for anything. You did everything you could, exactly how you were supposed to, with everything you knew. Don't let your memories of your husband be defined by images of struggle and dying. He was so much more than that, and you both were so much more than that! You owe it to him to remember him through the lens of your first meeting and your first kiss. Live that life, and live it freely! If he loved you—and I have zero doubt he did—that is exactly what he would have wanted for you.

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After three and a half years, our battle is finally winding down. If everything had been confined "just" to lung cancer, I truly believe Mom would have had much more time, because those bastards have barely changed since we started. But this summer, they diagnosed a wild breast cancer that has already metastasized everywhere—all while the doctors were just now getting around to ordering a PET scan. We had actually been begging for that scan for nearly a year, ever since her breast markers first started climbing, even though nothing showed up on her mammogram. When we finally secured a referral to MD Anderson Cancer Center, the doctor there was absolutely floored that no one had sent her there sooner. As of tomorrow, Mom is officially being admitted to the hospital, and we are just waiting for the end... if I lived in America, I don't think this would even be an option, but with a high-risk pregnancy and living two states away, the most I’ll be able to do is call her or visit when I can. How I’m going to pull myself together mentally at the end? Only God knows...

What both Mom and I have concluded is that the most critical factor is having a competent, high-quality primary care physician. For four years, they bounced Mom from one mediocre doctor to another until they finally caught the lung cancer, which, by then, was naturally already at Stage IV. Everyone kept insisting her cough was just GERD, or that the scarring on her lungs was from tuberculosis (which she has never had in her life, but apparently, doctors know better), and when spots appeared on her neck lymph nodes, they claimed they were just swollen glands or fatty deposits depending on which doctor happened to examine her that day. Her primary physician never gave up; she kept sending her for various tests because she wasn't satisfied with her colleagues' work and was certain they were missing something. She was 100% right. For every wonderful doctor in our hospitals, there are just as many criminals who aren't fit to treat a child with a plastic toy. Regarding the specialty clinics or the local hospital systems out here, I wouldn't go there even if my life depended on it—not just because of the "treatment" and "diagnosis" experience my mother endured, but because it was simply the final straw in a long line of incompetence. (At least based on my family's experience and my own). While I wouldn't recommend the local community hospital to anyone, the same goes for specialized centers like MD Anderson.

Hey there,

It’s honestly heartbreaking reading stories like this. For me personally, it hits hard when I realize there are doctors out there who just straight-up don't care about their patients.
Because of that lack of empathy, we end up turning to forums, searching the web, and digging through all sorts of online resources just to find the answers we should have been getting directly from our physicians in the first place..
I went through this myself with a benign tumor that caused me such indescribable pain and misery. After six agonizing months of endless testing—a lot of which I had to pay for out-of-pocket privately—I ended up paying for my own MRI, which finally pinpointed that damn tumor. To make matters worse, I spent over two months waiting for surgery because they told me it "wasn't an emergency," meanwhile I was stuck in bed because the pain made it impossible to do anything else.
Recovery is moving at a snail's pace, but I'm not complaining; I'm just grateful to be on the mend.

Most of the doctors I dealt with were a total letdown—they lacked both the expertise and the basic human decency. Honestly, I feel lucky I turned out okay.

And I really feel the same way as Rachel Williams; my primary care doctor never gave up on me. She kept saying, "There has to be a cause for this," and I am incredibly thankful to her for everything she did.

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Quote: my Soul

Rachel Williams said:After three and a half years of fighting, we’re finally approaching the end of the road. If this were "just" lung cancer, I honestly believe Mom would have had much more time, because those bastards haven't changed much since the start. But this summer, they diagnosed a wild breast cancer that has already metastasized everywhere—all while the doctors sat on their hands. We spent nearly a year begging them for a PET scan after her breast markers first started spiking, but they insisted nothing showed up on the mammogram. When we finally secured a referral to MD Anderson Cancer Center, the doctors there were absolutely floored that no one had sent her there sooner. Starting tomorrow, Mom is officially being admitted to the hospital, and we’re just waiting for the end. If I lived in America, I wouldn't even consider this situation, but living two states away while dealing with a high-risk pregnancy makes everything harder. The most I'll be able to do is call her or visit when I can. As for how I’m going to pull myself together mentally when this all hits the fan? Only God knows.

Both my mom and I have come to the same conclusion: the single most important thing is finding a high-quality primary care physician. My mother spent four years being bounced around from one dismissive doctor to another before anyone finally caught her lung cancer—which, by then, had already progressed to Stage IV. All they did was tell her the cough was just acid reflux, or claim that scarring on her lungs was from old tuberculosis (which she’s never even had, but apparently doctors know better than she does). When swollen lymph nodes started appearing in her neck, different doctors would call them anything from enlarged glands to just fatty deposits. Her GP refused to back down; she kept pushing for more tests because she knew her colleagues were missing something, and she was 100% right. For every brilliant doctor working in our hospitals, there's a criminal who isn't fit to treat a stuffed animal. As for the specialty clinic over in the city center? I wouldn't go there if my life depended on it. Between their "treatment" and their complete failure to diagnose my mother, they are the absolute final straw regarding their incompetence. That goes for the local community hospital too, though I wouldn't recommend them to anyone, and the same applies to MD Anderson Cancer Center.

I'm really sorry. 😢
I really hope Mom gets to see those grandkids and that you get the chance to say a proper goodbye to her. You both truly deserve that much. I just hope the universe—or God, or whatever is out there—restores some kind of balance and gives you both that peace.
Hang in there.

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Angela Wright said:Did you go?
Please, think carefully about whether this is actually worth it—you might walk away with insights that only serve to disturb you further and throw your entire life into chaos. It’s very possible you’ll feel the urge to file a lawsuit, but given the state of our legal system here in the States, the shortage of doctors, and frankly, how much of a joke the medical boards can be... I fear you'll only end up hurting yourself. You won't find justice or satisfaction; nothing will bring him back. Just look at how the Mascara case ended.

Here is my honest perspective, looking at this from a distance:
Objectively speaking—your husband was incredibly ill. In the situation he was in, you both fought for even just a little more quality of life, and honestly, the way you handled it was a beautiful example for others. A total remission would have been nothing short of a miracle. If they deprived him of something—like those antibiotics—then that was simply time taken away from his quality of life. Ultimately, he passed because of that damn diagnosis that put him in that state to begin with.
Those are the facts. No matter how painful and difficult this is for us, and no matter how much we feel the need to pin the blame on someone—because, for some irrational reason, it feels like blaming someone would make dealing with the reality easier—that is just the brutal truth.

Focus on yourself now. Try to achieve those things that perhaps you two dreamed of doing together. Move forward. You have to. It is much easier to accept things this way than to stand still while life pushes you forward by sheer inertia, leaving you just banging your head against a wall. And please, don't blame yourself for anything. You did everything you could, exactly how you were supposed to, with all the knowledge you had. Don't let your memories of your husband be defined solely by images of struggle and death. He was so much more than that, and you two were so much more than that! You owe it to him to remember him through the memory of your first meeting and your first kiss. Live for that, and live freely! If he loved you—and I have absolutely no doubt that he did—I am certain that is exactly what he would want for you.

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I'm going this Thursday; I absolutely have to pick up the EEG results. I won't be filing a lawsuit or anything like that—I've already consulted with a lawyer and a court expert, and they told me quite plainly that it's pointless. At the end of the day, all you get is a piece of paper confirming whether they were wrong or not, and that paper won't change a single thing. But I do need answers. Getting those answers is my only way out of this endless loop, because right now I'm just spinning in circles. Only she can tell me why she didn't follow the prescribed treatment plan.