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

Jamie Rivera78 said:Cancer is a whole lot more complicated than just this one thing. We have no way of knowing if there are metastases present right now. Even when nothing shows up on the scans, they can pop up in a month, two months, or even six. Unfortunately, if that CA-125 is truly sitting around 1000, it’s definitely not providing much reason for optimism.

I mean, who is actually talking about "visible metastases" here, and what does that even specifically entail? I'm asking purely because we seem to be throwing around terms like "complexity" as if we're analyzing a crime novel, though it feels like you're just adding that extra layer of gloom to sound more dramatic. You essentially repeated exactly what I said, just dressed it up with that "complex" label to inject some negativity. A CA-125 level near 1000 doesn't inherently mean anything in a vacuum; the only thing that matters is how far the process has already progressed. Personally, I’ve dealt with markers that were so far off the charts they couldn't even get an accurate reading on them, and yet, here I am. Markers alone don't tell the whole story...

Raymond Smith53 said:Who's even talking about visible metastases? And what does that actually mean? Just asking since we're throwing around this word "complexity." Honestly, you just said the same thing I did, you just tacked on that "complex" bit to make it sound like some gritty crime novel or to inject a little gloom. A CA-125 level around 1000 doesn't mean jack squat; it’s all about how far things have gone. I had markers so off the charts they couldn't even measure them, so there. Markers don't mean anything...

I see the anger here, and honestly, it's totally pointless.
The main reason I jumped in was because of that idea: "If it isn't, then with cancer, at least it's straightforward. You cut it out and it's gone."
Look, when you go under the knife, there's no way to be 100% sure if the cancer is still lurking somewhere else in the body. So, saying surgery wipes the slate clean is just wishful thinking. That's not being negative; it's just being real.
And I absolutely cannot get on board with the idea that a CA-125 value of 1000 means nothing. If that were true, doctors wouldn't even bother using it. I'm not saying it's a death sentence, but it definitely points toward a rough prognosis.

The patient is constantly wet. I guess... if anyone here has some advice, I could really use it. I change the diaper, but then the same one feels soaked almost immediately. It's severe incontinence, though it isn't from a catheter since he hasn't had one for quite a while now. I also have to use two pads because every single time I try to change his clothes, he leaks—it happens almost every time he's on his side. Because of that, a single pack of pads lasts maybe a week, or at most two. On top of that, he's having a hard time swallowing, especially liquids; food seems easier for him. But even then, things leak down his shirt. He can drink normally when he wants to, but that usually only happens in the evening. He’s actually awake more at night than during the day. So, if anyone has any tips... I honestly never know the right moment to change the diaper. And what kind of meals should I be making? Aside from pureed soups, omelets, cottage cheese, and baby fruit pouches, I'm running out of ideas.

Perhaps I shouldn't be posting here at all. Out of respect for everyone and the purpose of this forum, I am making a conscious effort to write clearly rather than my usual haphazard way. I cannot quite explain why I have been spending so much time here lately, reading every single thing. Perhaps it is because my fear of cancer borders on insanity—a fear rooted in the day my grandfather passed away from that disease. Maybe it is the anxiety of waiting for a friend's test results, or perhaps it is the fact that someone I am intimate with has faced this monster herself; even though she has been doing well for over five or six years now, I still tremble during every checkup. It might just be human curiosity, though I sincerely hope I am not exploiting your suffering for that reason. Reading your stories leaves me feeling both grateful for my own health and terrified of the future. Please forgive me if my presence feels disrespectful to you, your loved ones, or your circumstances; that is truly never my intention.

Every so often, I stop in pure disbelief after reading about certain fates. Zazie, Tasha, Dina9, Najmilija... may they rest in eternal peace. I hope they are in some beautiful place now, watching over those who cared for them. If I have missed anyone, please accept my apologies, but certain posts have left a permanent mark on my heart. All those young, powerful women—it is inconceivable and unacceptable to me that they are gone. They were fighters, heroes, angels, superheroes. They deserved to live. They deserved to be mothers, daughters, wives, and friends. They deserved so much more. Yesterday, the news about Dina9 hit me hard. For some reason, I was convinced she had made it; I somehow missed her final updates and the notice of her passing. Perhaps I read her messages more than most, but it struck a chord. Then there was Zazie, who defied every grim prognosis and remained a cornerstone
Tasha... I am speechless, especially since she had just become a mother. And Najmilija, who never even got the chance to see the beauty of this world. I wanted so badly for all of them to live, and for these diagnoses to simply stop coming...

I realize some of these events happened ten years ago or more. I know I am late to the conversation, that I wasn't part of these stories, and that I have no real reason to reach out. Perhaps I am being selfish, trying to clear my own conscience because I feel guilty reading such sensitive matters that don't involve me. Regardless, please forgive me once more if I have caused any offense.

Angela Wright, Una, and the others—my deepest respects to you. I admire you just as much as the heroes I mentioned above. You help others so selflessly, even while fighting your own battles. Respect. To everyone else battling this beast or cheering on your loved ones, I send nothing but positive energy and love. You are winners. You are the strongest and the bravest.

Respectfully, just an insignificant, humble observer.

Does anyone have experience using Nutilis powder for severe dysphagia? I’m wondering if it can completely replace regular liquids because the pharmacist suggested I shouldn't give him standard fluids and that he should just use a straw instead. He *can* drink, but he coughs and gasps so much... it's scary. If he doesn't drink, he gets dehydrated, which almost happened once already. So, I’m honestly at a loss. He can manage soft foods without an issue, but it’s the liquids—the water and juice—that are becoming unbearable. Also, does anyone have advice for skin breakdown under a diaper? After just a few days, his skin is raw again from sitting and friction, but he *has* to sit because things get even worse if he doesn't. That might be why the swallowing issues started; those nurses from home health weren't being very smart and insisted on laying him flat, telling me not to let him sit even though I argued against it. Back then, he could eat and drink normally without this intense dysphagia, which seems to have become quite severe now.

Could someone help me interpret this lymph node biopsy result? (We're primarily looking at melanoma) – it shows reactive lymph nodes, detected lymphocytes, some immunoblasts and phagocytes, and follicle center cells. Should I take this as a good sign?

hello everyone. Sending a ton of strength to anyone out there dealing with a loved one facing illness... I wanted to jump in here and ask about some test results regarding a family member... brain tumor... glioblastoma WHO Grade 4: glioblastoma IDH1wt
Brain CT, left frontal lobe
Is this the aggressive type? If anyone could elaborate a bit more, I’d really appreciate it..

My friend just received his test results. Unfortunately, it’s malignant. From our brief conversation, I gathered that the pathology report isn't fully finalized yet; right now, it's just a confirmation of malignancy. He is scheduled for surgery next week, followed by further analysis and consultations, which should hopefully provide more clarity on the specifics. Even though I knew this was a possibility, I haven't quite accepted the diagnosis yet.

Karen White47 said:Can someone please explain this lymph node biopsy result? (It’s primarily regarding melanoma) – reactive lymph node, lymphocytes found, some immunoblasts, phagocytes, and follicle center cells. Should this be considered a good finding?

Not exactly, unfortunately. Once the disease spreads to the lymph nodes, we're looking at metastatic disease, which is much tougher to treat and carries a worse prognosis. At this stage, it really just becomes a battle to extend the quality of life for as long as possible. I truly hope they are still in a condition where surgically removing the affected node could yield good results and provide years of quality life under constant monitoring.
I'm not a 100% expert on melanomas, but there's a thread on this forum—it's an old one, but there was a lot of discussion there.
I wish I had better news to offer.

Rebecca Alvarez86 said:Hello everyone. Sending huge strength to anyone currently battling a loved one's illness... I wanted to ask about some test results here. A close family member has a brain tumor... glioblastoma WHO grade 4: glioblastoma IDH1wt
located in the left lateral frontal lobe of the cerebrum
Is this the aggressive type? If anyone could elaborate a bit more, I would really appreciate it..

Essentially, all these newly identified subtypes don't change the fundamental reality much, because treatment protocols remain largely the same—surgery whenever possible, followed by radiation and Temodal. The only real difference might be a slight variation in how fast the disease progresses.
What you're dealing with is what you've probably already realized: one of the most insidious and hopeless malignant diagnoses out there. Even for those who have access to top-tier medical systems where they get an MRI every three months and immediate surgery at the slightest sign of recurrence, the outlook is tough. There have been countless experimental drugs, but so far, nothing seems to have come anywhere close to matching the results of standard surgical intervention and Temodal. I had high hopes that immunotherapy or stem cell research would provide a breakthrough by now, but since my mom got sick back in 2005, I haven't seen anything truly revolutionary. 😢
I want to wish you so much strength. The best advice I can offer is to live entirely in the "here and now." Don't let your mind wander further than what you're cooking for dinner tomorrow; just take things as they come and try to stay as calm as possible as the situation evolves. div>

Ryan Fisher75 said:So, my friend just got his results back. Unfortunately, it’s malignant. From what I gathered during our brief chat, the pathology report isn't fully finalized yet—it's just the confirmation of malignancy for now. He’s heading in for surgery next week, followed by more analysis and consultations, which should hopefully give us the full picture. Even though I knew this was a possibility, I haven't truly wrapped my head around the diagnosis yet.

The critical thing right now is whether it spread to the lymph nodes; let's hope the pathology report shows it hasn't. Sometimes, a single surgical procedure can resolve everything. We need to wait for the final pathology results with a level head. It is what it is—there's no sense in fighting reality; resistance only breeds hysteria and despair. And a bit of advice: always remember that the person actually sick is going through something far harder than those of us standing on the sidelines. They aren't just battling a diagnosis; they're wrestling with their own fears and a heavy sense of guilt for feeling like a burden to everyone around them. Just stay steady, let them talk about whatever is on their mind, listen, and be their rock.

mistyjackal842 said:Has anyone here used Nutilis powder for severe dysphagia? Does it completely replace liquids? The pharmacist told me it might be better not to give it to him and just let him use a straw instead. He can drink, but he coughs and gasps, and if he doesn't drink, he gets dehydrated—which almost happened once already. I’m at my wits' end. He can handle soft foods without an issue, so that’s fine. It’s just the liquids, water, or juice. It’s become unbearable. Also, does anyone have experience with skin breakdown under the diaper? After just a few days, his skin is raw again from sitting and friction, but he *has* to sit because things get worse if he doesn't. That’s actually what triggered the swallowing issues; those incompetent home health nurses laid him flat, and they told me not to let him sit up because of his skin, even though I fought them on it. Back then, he could eat and drink normally before this severe dysphagia kicked in.

For the skin—use Granuloflex patches and apply Dermazin cream.
As for the powder, I don't know; unfortunately, I haven't dealt with that.

Angela Wright said:The mods asked me to kick off this second part because the first thread hit the 10,000-post ceiling—that’s the admin limit for closing a topic. Everything stays right where it is; you can still read every single post, we’re just moving the conversation over here.

Here are the links to the first and last pages of the old thread.

Let me take one quick moment to look back at that original thread.

When I started this, I was in a truly dark place in my life. Honestly, I wasn't looking for answers so much as I was just drowning in despair. I was driven by that idea that if you put good energy out there, it comes back to you tenfold, so I hoped God would step in and help me through my situation. And truthfully, He did. This thread has brought so many good things into my life personally. Unfortunately, some of those big moments ended in massive disappointment, but I never once wanted to stop writing here. It became a habit, plain and simple. I still believe that if I help someone else, God will help me, but this has also become my way of finding a shred of higher meaning in all the horror my mother and I went through together.

501 pages, 10,014 posts, 1,338,026 views. Those numbers represent a mountain of grief, agony, and desperation, but they also hold a wealth of insight, comfort, and peace. When I launched this, I had no clue what those numbers would eventually mean or how much heavy, fundamental life trauma they were hiding. Now, after seven years on this thread, I’ve gathered an incredible amount of experience and wisdom. One lesson stands out: if we don't pass our knowledge along—even when our own stories end badly or beautifully—we won't see any progress. These numbers will just keep climbing because the world is getting older and sicker.
In that spirit, I’m asking everyone who writes here: please, come back and check in once you’ve navigated your crisis. Help someone else solve theirs. You don't have to be a fanatic like me, but think of it as a way to offer a tribute to the suffering of your loved ones or your own struggle. For those who lost their battles, honor their souls; for those who made it through, do it out of gratitude. Personally, it gives me a hell of a good feeling, and I’d recommend it to anyone. 😉

See you in the threads. 🙂

I feel the need to share this post from 2014 with you all today. It’s been 14 years since I started this thread. I can't say I'm "glad" it exists in a traditional sense, but I am glad people are still finding value in it. In terms of worldly achievements, I haven't done anything earth-shattering—I finished college, got married, raised two little ones whose rehab I'm still involved in today, cared for my mom through what was likely the worst possible cancer diagnosis, took plenty of hits from the system and people who hurt me, and survived enough losses to fill a book. But I keep pushing. Every so often, I get a message in my inbox, and after all this time, having people thank me or look up to me... it touches me. It tells me that I might have left a trace of God behind for others. But honestly, there's no need for praise; I simply did what I believe every one of us should do, at a minimum, to ease the path for those coming after us. Life is suffering, and illness is part of the package. How much of that journey is filled with tears versus laughter or blessings depends entirely on us and our perspective. Not everyone gets healed, and not everyone gets a peaceful passing, but we can all strive to be slightly better humans, carrying more dignity and love for others in our brief time here. The system is a heartless meat grinder, but never forget that we are all part of it, and change moves from the bottom up. I didn't achieve everything I set out to do, but maybe someone else will. So, never stop trying to give things meaning, even when your own story ends on a note you didn't expect.

Angela Wright said:Look, at the end of the day, all these newly discovered subtypes don't actually change much—everyone is still getting treated the exact same way. It’s surgery when they can pull it off, radiation, and Temodal. The only real difference might be how fast the disease progresses, but that's about it.
Look, we’re dealing with one of the most insidious, hopeless diagnoses out there—something most of you have probably already realized. For those who actually survive the longest, it usually means having access to a healthcare system that monitors them every three months with brain MRIs; the second they see even a tiny sign of a recurrence, they go straight in for surgery. People have tried all sorts of experimental drugs, but honestly? Nothing seems to come close to the results we get from just sticking with Temodal and surgical intervention. I kept holding out hope that immunotherapy or stem cell research would finally move the needle, but since my mom first got sick back in 2005, I haven't seen a single real breakthrough. Nothing. 😢
I want to wish you guys all the strength in the world. If I can give you one piece of advice—and I mean this sincerely—it’s to just live in the here and now. Don't get ahead of yourself. Don't stress about what you're cooking for lunch tomorrow or next week. Just take things as they come and try to stay as calm as possible while the situation unfolds. div>

Thanks so much for the reply. Honestly, we’ve realized just how sneaky this disease really is—everything flipped upside down practically overnight. It went from a sudden seizure straight to this diagnosis. He had surgery, and they managed to remove as much as they possibly could, but what’s left is tough because it’s buried deep, right in the center. They couldn't risk touching more and potentially taking everything away from him. Even though the surgery is over, he can't move or even lift himself up right now—his right leg is giving him a hard time. A physical therapist is working with him, and now we're just waiting to start therapy.

Sophia Peterson69 said:Please, I need any info regarding ovarian cancer... both ovaries and fallopian tubes have been removed, and the surgery went okay, but the marker showed a value around 1000 or something, and now the doctors want to remove the uterus too. They say they're doing it preventively because it was caught early... if you have any experiences regarding what comes next or the chances of recovery, please let me know. Thank you so much beforehand.

Up in Indianapolis, there's actually a local association for women dealing with ovarian cancer called JA-KA.
Maybe try looking them up on Facebook; I bet they'll be more than happy to help answer all those tough questions you might have.

https://www.facebook.com/Udruga-%C5%...27328830711757

I'm really rooting for you and wishing you nothing but the best. hello!
Silva F.

hello to everyone out there fighting this battle, whether it's you or someone you love deeply.

Looking through your posts, I get the feeling things haven't hit their absolute worst point here in the States yet, though we might be getting pretty close...

I was wondering if anyone here has any actual experience with oncology treatments at the private Solmed Clinic?
The doctors there are apparently from the Sister of Mercy.
Their website is packed with all sorts of info about cancer and nutrition and stuff, but honestly, it all feels a bit vague and non-committal to me, I guess.
.
Feel free to just send me a DM if you'd rather not post everything publicly.
thank you.

hello! I am reaching out to anyone who might be navigating a similar storm to ask for a bit of guidance. My mother-in-law is currently dealing with a situation where she’s vomiting up white foam and whatever little food she manages to ingest; her stomach simply refuses to accept anything at this point except for water. Her diagnosis is malignant breast cancer with metastases, a battle she has been fighting bravely for thirty years now, though things have unfortunately taken a turn for the worse recently. I am looking for any advice regarding nutrition—what can we possibly do about diet when the body is rejecting everything? And more importantly, what are the underlying reasons why the body suddenly stops accepting food like this?
thank you!

ruggedrider2 said:Hello! I’m looking for some advice from anyone who has dealt with something similar. My mother-in-law is vomiting up white foam and food. Her stomach just won't accept anything except water. The diagnosis is malignant breast cancer with metastases. She's been fighting this for 30 years, but lately, things have been getting worse. What do you suggest regarding nutrition? What could be causing her to reject food?
Thank you!

The stomach really needs to be looked at. It's possible there's a metastasis causing issues there.
She should ask her oncologist about nutritional supplements—things like Ensure or Prosure—that can act as meal replacements. These are designed to provide the full caloric and nutritional value of a standard meal. Just have her sip them very slowly, whatever she can manage to keep down.

My mom wasn't exactly thrilled about drinking those supplements, but she did start eating better afterward. With Dad, though, Prosure used to give him diarrhea, so I just stopped giving it to him. You really have to watch out for that kind of thing. I suppose there might be even better options available, but they usually just list those details in the discharge papers. The last thing I picked up was Fresubin, but honestly, it’s so thick and heavy—kind of like liquid heavy cream—that I didn't quite have the nerve to give it to him. It just felt way too thick.

Hello, a family member has been diagnosed with glioblastoma. Taking higher doses of Dexamethasone seems to be triggering depression, fear, and anxiety. Is there anything that can be taken to eliminate these side effects, or at least take the edge off? He refuses psychiatric help and won't touch psychotropic medication. Is there anything natural out there?
Hvala!