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Posts by Angela Wright

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Carl Doyle92 said:Hi everyone. My mom (63 years old) has lung cancer that has metastasized to her bones. She finished three cycles of chemo, which actually shrank the tumor, but then she developed pneumonia and spent a week in the hospital. She’s been discharged now, but she has to use supplemental oxygen (4L for 18 hours a day) because her levels are too low. When she isn't using the oxygen, the pulse oximeter shows her levels dropping to 80, or sometimes even lower—usually hovering between 80 and 85. The strange thing is, she doesn't even seem to feel it; she isn't gasping for air or struggling to breathe.
As soon as she puts those nasal cannulas in, her levels jump back above 90.
Now, here’s the issue: she uses oxygen all night long, yet she wakes up in the morning with a reading of 80, sometimes even lower. During the day, whenever she uses the oxygen, she stays above 90. Why is her oxygen dropping overnight despite being on the machine? Does anyone know if there's a reason for this?
I was wondering if maybe she’s breathing through her mouth at night, so the oxygen isn't getting into her nose properly? I don't know if that matters. Maybe she should be using one of those masks instead of the nasal tubes, if that even makes a difference. Is there any real distinction between the masks people usually wear and these little nasal tubes?

She probably has sleep apnea (where you stop breathing while asleep). They might want to put her on a CPAP machine at night along with the oxygen—that's the mask that provides both the oxygen and the pressure needed to help her breathe.
shadowbison75 said:I wanted to check in with some updates on my dad’s condition... unfortunately, it isn't looking good.

The tumor is too large to operate on right now and they're planning to go with either radiation or chemo—they haven't settled on the specific combination yet.

They're going to insert a feeding tube and perform a tracheotomy either today or tomorrow.

I’ve been trying so hard to stay positive these past few days, but honestly, I'm just feeling completely devastated and drained right now...

The radiation will almost certainly be aimed at shrinking that tumor down enough to make surgery an option.
We keep fighting. Life is nothing if not a series of ups and downs, and this is no different. It’ll get better!

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shadowbison75 said:They ran a CT scan today. To be honest, from my perspective as a layman, I’ve got a nagging feeling that things are looking a lot worse than what the specialist concluded after their physical exam.😢

Merck produces Erbitux, which is currently indicated for wild-type colorectal cancer, but if you dig into the clinical studies, it actually shows even more impressive results for head and neck cancers. Do yourself a favor: go ahead and Google it, then sit down with your oncologist to see what they have to say about that specific mutation.
Don't go being all negative! There’s always a silver lining if you look hard enough.

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Adam Fox3 said:I live outside the US. In an EU country, too.

Testicular cancer. A 0.7mm lesion in the capsule.

I'm heading in for surgery to remove my left testicle. Uhhh.

Does anyone have experience using THC oil, and where can I actually get a hold of it?

It’s going to be fine. As long as they haven't hit the lymph nodes, you're catching this right on schedule. Just stay brave.

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Morgan Wilson8 said:Is anyone out there? I feel absolutely terrible and completely left in the dark. I can't stand being in the hospital with him—the nurses and doctors are incredibly rude—and the illness just keeps getting worse...

Hang in there.
You have this cancer forum where people actually stay active.
That lack of information is the absolute worst part, I know. You have to be annoying about it—just like a broken record—and constantly nag them for answers. If you don't push, nobody else will.
Stomach cancer is like any other cancer; the prognosis really hinges on whether there's metastasis and the specific grade of the malignancy. Usually, they surgically remove everything diseased first, then move on to oncology treatments like radiation or chemo depending on the stage.
You have to switch yourself onto autopilot. I know that sounds easier said than done, but it's the only way to keep your head straight so you can actually be useful to him. He needs you focused! Live one day at a time and tackle things as they come. Don't go looking at a future further than tomorrow!
Let's go—stay brave, grit your teeth, and face it without fear. Fear just drains the very energy you need to survive!

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Elizabeth Perez76 said:We’re all pulling for that outcome! Another complication is the spinal metastases. Has anyone heard of an Ewing sarcoma case where those actually receded after neoadjuvant chemotherapy?

Bone metastases are typically handled with radiation, and honestly, it works quite well. They aren't usually the primary cause of mortality.
Generally speaking, sarcomas are incredibly rare and notoriously difficult once they start metastasizing. The gold standard is always surgical removal—getting everything out. Anything else is essentially just a tactical attempt to extend quality of life. That doesn't mean people don't pull through these situations, though. Personally, I don't know any survivors because this is such a rare diagnosis and we're living in a relatively small part of the country. You'll have better luck finding success stories online.

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Elizabeth Perez76 said:Thanks for getting back to me! I actually thought I’d get an email notification once there was a reply, which is why I’m running a bit behind on this one.

A friend of mine was in Vienna at a private clinic—the first place they reached out to—and he actually started his first round of chemo there. They felt strongly that treatment couldn't wait, even before he had finished his PhD. It seemed a bit unconventional to everyone watching, but the family agreed, likely driven by fear or just that desperate need to take action immediately. Dr. Simetić has been kept in the loop on everything, and since he’s since completed his PhD back in New York (with the Ewing sarcoma confirmed), he’ll be finishing up the remaining chemo cycles there. It sounds like they’ve determined that surgical removal isn't an option right now, probably due to metastasis.

Dr. Herceg is familiar with the case, but Dr. Simetić is still heading up the treatment. They were assured that the two doctors are working in close coordination, so the patient is in good hands.

The goal is to shrink the primary tumor through therapy, making it much easier to remove surgically later on. That’s likely the reason.
Rebecca Alvarez86 said:Sending support and strength to everyone out there..

I’m looking for some insight regarding someone refusing monotherapy after a glioblastoma diagnosis. They were supposed to undergo a cycle consisting of 5 days of Temodal followed by a 23-day break. However, after just one day, they’ve decided to stop because the vomiting and side effects are just too much to handle. Currently, they have lost control over their right arm and leg and are essentially bedridden.

Should we be bracing ourselves for a sudden decline?

Generally speaking, the disease progresses steadily. At least, that was the trajectory with my mother. For her, the decline really accelerated after her final dose of Temodal. It started with her legs giving out, then moved to her arms, until she eventually became completely paralyzed from the head down. Swallowing was the only thing she could still manage.
Do everything in your power to ensure they receive proper palliative care.
Gary Williams18 said:Hey everyone. Just got my bloodwork done because I have a follow-up tomorrow with a gastroenterologist for an abdominal ultrasound. It’s all because of this persistent discomfort I’ve been feeling on the right side of my abdomen, somewhere around the middle. It shows up just below the right rib cage but then drifts down toward the hip—that's how I'd describe where I "feel" it. I started Googling again, fell into one of those endless rabbit holes, and honestly, it's driving me insane.

So, the bloodwork came back mostly normal, except for my CRP, which is sitting at 10 (the reference range goes up to 5)... and now what am I supposed to make of that? I know, I know, I see the doctor tomorrow, but I can't stop overthinking this right now. My search history is basically a hundred different diagnoses by this point.

By the way, I was actually posting on this forum with similar issues a while back... this discomfort comes and goes, but here we are again.

It could be gallstones, and maybe a bit of inflammation is starting to kick in.
If you're dealing with burping that smells like rotten eggs along with some bad breath, there's no question in my mind.
The ultrasound will give you the real story.

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Elizabeth Perez76 said:Sending big, warm, empowering vibes to everyone following this thread.

I’ve been lurking here for about a year now, searching for answers and the kind of support you can only find by reading through everyone else's lived experiences.

Why am I posting now? Because during this past year of learning everything I could about metastatic colorectal cancer, we hit another ugly diagnosis—one where, unfortunately (or perhaps fortunately?), there isn't nearly enough information available online.

It involves someone very close to me, a young person (born in '91), who has been diagnosed with a sarcoma of the sternum with metastases along several points of the spine. They've gone through multiple biopsies, but it’s clearly an incredibly rare type because the doctors have only been able to confirm it's a sarcoma; they aren't certain of the specific subtype, though they suspect it might be General Electric sarcoma.

I know some of you here have fought sarcomas yourselves or supported family members through them, so I’m reaching out to hear your perspectives and experiences.

A friend has an appointment this Monday with the oncologist, Dr. Smith, at the major metropolitan hospital, and in the meantime, the family is trying to reach out to specialized referral centers abroad to send samples for a second opinion.

Thanks in advance to anyone who can find the time and energy to reply!

When dealing with any sarcoma, the gold standard for treatment is surgical removal whenever and wherever that's physically possible.
The heavy hitter for sarcoma specialists in Europe is Dr. Casali in Milan, and honestly, the best move is to get in touch with him as soon as possible.
https://www.medifind.com/doctors/pao...asali/17903153

As far as the local metro hospitals go, Duke and Shante are the top dogs for sarcomas, though Shante is much easier to talk to and more open to discussing various clinical trials.
Donna Cook said:Has anyone ever come across a blueberry-flavored nutritional supplement?

My dad had surgery for colon cancer at Mayo Clinic, and while he was there, they gave him this blueberry drink that actually tasted pretty good.

Now he’s on Support, which comes in cappuccino, chocolate, and some fruit flavor that he just can't stomach. Since this has been going on for months, he's completely sick of those flavors, so we're looking for blueberry.

I can't for the life of me find out who the manufacturer was for that specific blueberry one, and I have no clue if it's something you can just pick up at a pharmacy without a prescription.

Hopefully someone here knows a bit more about this. Thanks 🙂

Maybe an Ensure blueberry or rosehip flavor?
https://ensure.com/nutrition-product...-protein-drink

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Chris Mitchell4 said:I’m checking back into this thread after more than six months.
Long story short: a year ago, my dad (59) was diagnosed with Stage 4 lung cancer.
He went through six rounds of chemo at Mayo Clinic followed by some maintenance therapy. Last November, he also had palliative radiation on his brain.
Once the maintenance treatment wrapped up, the cancer flared back up, so he was sent for immunotherapy at MD Anderson and has completed two cycles.
His general condition might not seem all that bad if it weren't for the agonizing pain he's dealing with in one hip and knee.
The pain flares up whenever he moves, so he just stays in bed constantly, avoiding any necessary movement or even turning over.
What can we do?! Where can I find effective painkillers (because Ibuprofen 800 isn't doing a damn thing) or should we be looking at other ways to manage the pain?
Please, I need help or advice!
The pain is horrific; neither he nor my mom can sleep at night.
The GP prescribed some patches, but those aren't helping the hip pain at all. The specialists haven't recommended anything concrete either.
This has been going on for over a month and a half.
Who should my parents reach out to?

I'm sorry I'm just seeing this now, but I hope it's not too late to offer some advice.
Bone pain is most often caused by bone metastases, which, in cases of lung cancer, usually respond very well to palliative radiation—it can provide quick relief.
As for the pain itself, you might want to look into the pain management clinic over at Draskovic Street under Dr. Loncar. Managing acute pain is really the specialty of anesthesiologists. They titrate doses of a cocktail and teach you how to adjust the dosage based on the situation.

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Maria Baker41 said:Hello everyone! I’ve been lurking here for about two years now, and man, it feels like a lifetime given how long this battle against such a brutal enemy lasts. Our story is that my wife was diagnosed with metastatic colon cancer in her 40s. Naturally, she had surgery and now has a stoma.
Right now, I am in a really dark place mentally because the weight of all this is crushing me. We are currently waiting on a follow-up CT scan, and honestly, the waiting game is driving me insane.
Initially, they found two metastases—one in her lungs and one in her liver—which responded to chemo. The last CT results were just "so-so," according to the oncologist, so he switched her to a milder chemo regimen administered at a day clinic once a week, plus oral meds at home. Lately, he’s been dealing with frequent abdominal pain and vomiting; we think it might be something he ate that didn't sit right, but there's always that nagging fear of disease progression lurking in the background. I want to know how those of you acting as caregivers for your loved ones deal with all of this. How do you stop yourself from completely falling apart? There are days when anxiety just floods over me, making me wonder if I can handle it all—if I have the mental fortitude to stay strong because I *have* to be there for him and for our little kid. Please, I need advice. I’ve tried to be tough, but I feel like the very walls holding me up are crumbling.
He’s the one going through the worst of it, but he doesn't complain; he’s incredibly strong and brave.
I’m also wondering about alternative options. How can I best support him? I was terrified of doing anything on my own, but we bought some beta-glucan, though we aren't using it while he's on chemo. Now we're thinking about hemp oil... I just feel completely lost in all of this.
Thank you in advance, and good luck to everyone out there fighting!

The best advice I can offer is to take it one single day at a time and deal with whatever life throws directly in front of you in that exact moment. That is the only way to live healthily, keep your sanity, and maintain any sense of control over your situation. Both of you need to try to immerse yourselves in "the movie" of your life. Don't let the disease hijack the driver's seat; try to live your normal daily routine as much as humanly possible.
Whatever else life throws our way, we'll tackle it when it arrives. In my experience, obsessing over the future and constantly dissecting every possibility is an exhausting burden that we actually have the power to switch off through sheer willpower.
Remember, deep down, we are massive beasts that aren't even aware of our own strength; when the pressure hits, we don't ask permission—we move mountains.
Don't fall apart. Be the anchor. Live for right here, right now, and maybe plan a tiny bit for tomorrow—like just planning what's for lunch.

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Carol Gomez71 said: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 he can take to offset these side effects or at least take the edge off? He’s totally against psychiatric help or taking psychotropic meds—is there anything natural out there?
Thank you!

It’s actually pretty unlikely that the Dexamethasone is the sole culprit here. It’s more likely coming from the primary illness itself and the intensity of the treatment, which can push a person to such extremes that their entire personality shifts or they suffer intellectual decline, unfortunately 😢. One thing though: Dex can spike blood sugar levels significantly, so you really need to monitor that constantly and introduce medication if necessary.
Maybe try giving him some Valerian tincture; since it's herbal, he might be more open to it, and it should help him relax.
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.
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.
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.
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.
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>
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.