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

Amy Price8 said:I’m reaching out to all the kind souls on this forum because I really need some help. I am 74 years old, a non-smoker, and I don't drink. I've been diagnosed with pancreatic head neoplasia. My weight was always steady, but then I started dropping pounds rapidly, which prompted me to get an abdominal ultrasound and basic blood work. Everything looked fine on paper except for the ultrasound results. It was a total shock, and being hospitalized was just as jarring. Last November, they had to implant an intrahepatic bile duct stent. They told me that besides taking Ursofalk, there isn't much else they can do. Surgery isn't an option because the tumor is measuring 36x66 mm. Aside from having more frequent bowel movements, I'm not in pain. However, my doctor informed me that there is metastasis in my lungs as well as a lymph node, and he essentially told me I don't have a chance at survival. I have a family, and one of them has dealt with cancer before, so I haven't actually told anyone about how serious this diagnosis is or even the specific details. Does anyone here have any positive stories from a similar situation? I should mention that the markers aren't increasing; they seem to be stable for now. I would be truly grateful for even a single piece of advice. Right now, I feel completely alone and abandoned by the healthcare system. I just want to live!

You absolutely have to seek a second opinion. Period. You'll likely need to settle this with a private oncologist—I'd suggest looking into Dr. Cepulic.
I wish I could give you something positive to hold onto or offer you some actual hope... 😢
...but let's be real, this diagnosis is brutal. You need to talk to your people and tell them what's happening. No matter what lies ahead, you cannot go through this alone without support and help.
I don't know if you're a religious person, but lean on Bog's providence. You know, when a person lifts their hands in prayer, Bog only needs to point a finger.
Live life and make every single day count. We're all in this together, but a car could hit any one of us at any moment. That’s how everyone should live, whether they're healthy or sick. Make a change in your life right now; this is the moment. Just take it one day at a time. That's how miracles happen and how true realizations come.
I'm here for you, even if it's just virtually.
Keep us posted.

Angela Wright said:The Hospice Friends Association in America, provided they have it in stock, and definitely with a specialist’s recommendation based on the disease progression.
But honestly, if you don't have a pulmonologist's recommendation, please don't mess around with this on your own. It isn't just about putting a mask on someone's face and turning it on. You have to titrate the oxygen dose according to the patient's specific needs and follow strict instructions... because too much oxygen can actually burn the mucous membranes and make things so much harder for them.

Thanks so much for the reply. In the meantime, my dad ended up being admitted to the hospital. What I'm wondering now is—if they know when he'll be discharged—how does the process for home oxygen therapy actually work? He should finally be getting those insurance approvals soon. Before he was hospitalized, we were in and out of the outpatient clinic and ambulatory care quite a bit, and every single time, his oxygen indicators weren't quite low enough to qualify, even though he's been in pretty bad shape for months now... so I'm a bit lost. Does the hospital discharge him and then he's just stuck without oxygen for a few weeks while waiting for the paperwork to clear? Or is there a different procedure when transitioning from the hospital to home care?
Thanks in advance for any help.

Amy Price8 said:I am reaching out to all the kind souls on this forum to ask for some help. I am a 74-year-old non-smoker and teetotaler, diagnosed with Neoplasma capitis pancreatis. I simply want to live!

As Jane Doe mentioned, you absolutely must seek a second opinion. This is a heavy diagnosis—I’ve seen it affect my own family, though I also know someone who managed to foresee its progression. To be perfectly honest, I find your doctor's current approach somewhat unsettling. Regarding this specific therapy you are undergoing, I haven't encountered it before; is the primary objective intended to reduce the tumor size?

Please keep posting here. I understand how incredibly difficult this is, but please know there are many of us who have walked this path, and you certainly won't be facing this alone.

goldenpanther14 said:Thanks so much for getting back to me. In the meantime, my dad ended up being admitted to the hospital. What I’m wondering now is—if they decide to discharge him soon—how does the home oxygen therapy coverage actually work? Before he was hospitalized, we were in and out of the outpatient clinic and the hospital several times; every single time, his oxygen levels just wouldn't hit that specific threshold required for insurance to kick in, even though he’s been in pretty bad shape for months. How does this process play out? From what I understand, you don't just get an oxygen concentrator delivered overnight; sometimes there's a weeks-long wait. It’s confusing. Are they going to send him home and leave him without oxygen for a few weeks while the insurance paperwork clears? Or is there a different protocol when transitioning from the hospital to home care?
I really appreciate any insight.

I'm not entirely sure how the logistics shake out. It’s possible the hospital will provide some supplies via a discharge order to bridge the gap while you sort out the insurance claims.
Make sure you talk to the Medicare coordinator before he's discharged. You also have backup options through the Hospice Friends Association, and you might want to reach out to the Sailboat association for advice too.

Hey everyone, first off, I just wanted to say a huge thank you for creating this forum. Honestly, I think it means the world to so many of us out here.
So, like the title says, I’ve got a question regarding white blood cell counts. I’m guessing most of you who have gone through chemo have dealt with that dip in leukocytes at some point during the process. We all know the drill—usually, they pause the treatment, maybe give you some shots to boost those numbers back up, and so on. What I really want to know is how you actually handled yourselves during those stretches? Did you go full hermit mode, avoiding crowds and busy spots just to stay clear of any random viruses or the flu? Also, has anyone here actually ended up catching a secondary infection because their counts were too low, and if so, how did everything turn out? I'm open to hearing any stories or experiences you're willing to share. Thanks again!

Angela Wright said:I'm not entirely sure how the process works. It's possible you'll receive some supplies for home use via a discharge summary from the hospital while you wait to sort out the insurance reimbursement paperwork.
Make sure to ask your primary care physician before being discharged. You also have those backup options through the Hospice Friends Association, and you could always reach out to the Sailboat association for advice.

If "LOM" means a primary care doctor... she honestly doesn't know anything about this stuff, so none of that will apply. But, the hospital staff mentioned they handle it—making sure oxygen is ready for the patient at home—so I'm hoping there won't be any issues there. Do you think people at the Hospice Friends Association or the Sailboat association might know about nasal cannulas? I have no clue where to buy them, and I’d really like to have extra spares at home just in case. I even heard there are cannulas that are 10 meters long, so I'd love to find out where to get those. Thanks again for the help...🙂

goldenpanther14 said:If we're talking about a primary care physician... they don't know a single thing about this, so you can forget about getting answers there. However, the hospital mentioned they're handling it—that oxygen will be waiting for the patient at home—so I’m hoping that won't be an issue. Do you think I could ask the Hospice Friends Association or the Sailboat association about nasal cannulas? I have no clue where to buy them, and I'd love to stock up on some spares at home. I also heard there are cannulas as long as 30 feet, so I'd really like to find out where to get those. Thanks again for the reply. 🙂

God, these primary care doctors drive me absolutely crazy.🤦 Look, buddy, just grab your phone and call Medicare or the hospital and find out for yourself—that's literally what you're supposed to do. At least now you'll be informed for next time.☕
All the supplies should be covered under the same benefits, too.
You'll definitely get more useful information from local associations than from a GP; that's a guarantee, especially through groups like Sailboat.👍

I make my own water kefir (tibicos) constantly, and it's a great tool when fighting serious illnesses. If anyone's interested, let me know—I have extra grains I'm happy to give away (based in Los Angeles)! Best regards

Hey everyone,

It looks like my dad (60) has lung cancer. He’s been dealing with this nasty cough for over six months now; they originally diagnosed him with pneumonia, but the coughing just wouldn't quit. He’s lost weight, too, and for the last five months, he’s had intense pain in his right arm, running from the elbow down to the hand. He’s always been terrible about actually going to the doctor, so we finally managed to drag him in three days ago to get an X-ray on that arm. Based on the X-ray, the orthopedic specialist sent him straight to the Mayo Clinic for an emergency biopsy. He told him it looks like there's a growth eating away at the bone (the ulna, if I got that right). This morning, he coughed up blood—my brother said it was a clot about the size of a toddler's hand. He’s scheduled for the biopsy next week, and I’m driving him to the intake appointment on Tuesday morning.

What are the odds that the issue in his elbow is actually metastasis from lung cancer? He was a heavy smoker for about 25 years, but he quit back in '94 when his sister was a baby. From everything I’ve been reading online, the prognosis doesn't look great.

What should our next move be? Thanks for listening.

Lawrence Ortiz6 said:Good evening, everyone.

It looks like my father (60 years old) has lung cancer. He’s been coughing brutally for over six months now; he was originally diagnosed with pneumonia, but the cough just wouldn't quit. He’s lost weight, and for the last five months, his right arm—from the elbow down to the hand—has been hurting intensely. He’s incredibly stubborn about medical checkups, so we only managed to talk him into getting an X-ray of that arm three days ago. Based on the X-ray, the orthopedist sent him straight to the Mayo Clinic for an emergency biopsy. He told him there appears to be a growth eating away at the bone (the ulna, if I understood correctly). This morning, he coughed up blood; my brother said it looked like a clot about the size of a toddler's hand. He’s scheduled for the arm biopsy next week, and I’m driving him to the intake appointment on Tuesday morning.

How likely is it that the issue with his elbow is a metastasis from lung cancer? He was a heavy smoker for about 25 years, but he quit back in '94 when my sister was born. From what I’ve been reading online, the prognosis doesn't look good.

What should our next move be? Thanks for understanding.

It’s possible, but it could also be something else entirely, like TB.
If I were you, I’d head straight to the ER in Jordan for immediate care regarding that coughing up of blood.
Doing a biopsy on the arm without running thorough tests on the lungs—which is most likely where the actual problem is originating—doesn't make much sense to me.

Hey everyone, sending much love to you all—huge respect for how brave you guys are and for looking out for one another.
Honestly, my mom’s diagnosis has been such a gut punch that it drove me straight to these forums, and I’m really hoping you can help me navigate this. I’m especially looking toward Angela Wright, because it looks like she knows her stuff and has walked through this same kind of hell with her own mother.
So, here’s the deal: about two and a half months ago, my mom ended up in the ER at the pulmonary clinic because of a pleural effusion. After testing, it came back negative, but she spent three weeks stuck in the hospital practically flying blind without a solid diagnosis. In the meantime, they ran every test under the sun, including draining a pericardial effusion (which was about 700 ml of bloody fluid) and doing a lymph node biopsy, which, unfortunately, came back positive. Then they did a PET scan, which showed changes in the lymph nodes, so they sent her in to have those nodes removed. But then things went south fast—she had complications from a recurring pericardial effusion, and this one was way worse than the first. It forced them to combine the surgery for the lymph nodes with the procedure for the effusion. Just to be clear, they found metastases in the lymph nodes, but they haven't pinpointed the primary tumor yet. To make matters worse, things took a turn for the absolute worst after the effusion was treated; she ended up in the ICU, where she was in a coma for eight days. The doctors were basically preparing us for the worst-case scenario, but somehow, against the odds, she woke up and started making contact again. We finally got the results, and they look roughly like this:
CARCINOMA MAMME METASTATICUM
HER-2: POSITIVE (SCORE +3)
Ki67: 62.4%
TUMOR IMMUNOPHENOTYPE: Luminal B, HER-2 positive
Estrogen receptors: 90%
Progesterone: 25%
This sample is from both the pericardial tissue and the lymph node; turns out they’re the same thing.
She just had her first round of chemo yesterday, and once the insurance/Medicare approval clears, she’ll start on targeted therapy.
I know deep down that these results aren't good and the prognosis looks grim, but please, if anyone can break down what this actually means or offer any advice, I would be so incredibly grateful.

Chloe Anderson said:Hello everyone, and much respect to you all for your courage and for looking out for one another.
Unfortunately, my mom’s devastating diagnosis has brought me to these forums. I’m asking for your help, especially from Angela Wright, because it’s clear she knows her way around this and has walked through this same hell with her own mother.
Basically, about 2.5 months ago, my mom ended up in the ER at a pulmonary clinic due to a pleural effusion. After testing, it came back negative, but she spent three weeks in the hospital practically without a diagnosis. In the meantime, they ran every test imaginable, performed a pericardiocentesis to drain pericardial effusion (700 ml of bloody fluid), and did a lymph node biopsy which, unfortunately, came back positive. Following that, a PET scan showed changes in the lymph nodes, and she was referred to have them removed. Meanwhile, complications arose from a recurring pericardial effusion—this one being much worse—so they had to combine the surgery for the lymph nodes and the drainage of the effusion. I should mention there are metastases in the lymph nodes, but the primary carcinoma hasn't been pinpointed yet at this stage. To make a long story short, after dealing with the effusion, complications hit and she ended up in the ICU. She was in a coma for eight days, and the doctors were giving us the worst possible news, but somehow, she woke up and regained contact. The results came back, and it looks roughly like this:
CARCINOMA MAMME METASTATICUM
HER-2: POSITIVE (SCORE +3)
Ki67: 62.4%
TUMOR IMMUNOPHENOTYPE: Luminal B, HER-2 positive
Estrogen receptors: 90%
Progesterone: 25%
This sample is from the pericardial tissue and the lymph node; both are identical.
She received her first round of chemotherapy yesterday, and once insurance approval comes through, she will start targeted therapy.
I know the results are grim and the prognosis looks bleak, but please, if you can, explain these findings to me and offer any advice you have.

So, we are looking at breast cancer with metastases. If I were in your shoes, I’d push for a bone scan to see if there’s anything hitting the bones—especially the spine, because that’s where the devil loves to hide—since that would require immediate radiation.
Your mom will likely need a mastectomy, possibly bilateral depending on the findings, once she gets through some chemo. She'll be getting Herceptin later.
How old is your mom?
To be honest, right now it’s a stalemate, especially with that effusion. As soon as you puncture it, more builds up, and it can do serious damage to both the heart and lungs. I’m hoping the tumor stabilizes and recedes under the chemo so the fluid stops accumulating.
Metastatic disease is definitely not the best scenario, and HER-2 positivity isn't ideal either, but despite everything, she still has a fighting chance—especially if the targets are limited to the lymph nodes.

Look at it this way: she’s actually lucky they found the primary site. So many people never find the source and don't get a real chance to fight; they're just shooting in the dark.

Angela Wright said:So, we're looking at breast cancer with metastases here. If I were in your shoes, I’d be pushing for a bone scan to see if anything has hitched a ride on the bones—especially the spine, because that's where the devil loves to hide, and you really want to get radiation on that immediately if it is there.
The mom is likely going to need a mastectomy, maybe even bilateral depending on what the doctors find, right after she finishes some chemo. She'll probably get Herceptin down the line.
How old is she?
To be totally blunt, right now it's a holding pattern, mostly because of that effusion; as soon as you puncture it, it just refills even bigger, and that can really mess with the heart and lungs. I'm crossing my fingers that the tumor stops growing and starts shrinking under the chemo so the fluid buildup finally quits.
Having metastatic disease definitely isn't winning any prizes, and being HER-2 positive doesn't help matters either, but despite all that, she still has a fighting chance—especially if the targets are just the lymph nodes.

Look at it this way: she’s actually lucky they caught the primary source. So many people don't even realize where it started and never even get the chance for a real fight; they're basically just shooting in the dark.

Mom is 59. Wouldn't a PET CT already pick up changes in the bones, or is a bone scan really necessary?

Chloe Anderson said:My mom is 59. Wouldn't a PET CT scan pick up bone changes? Or is a bone scan actually required?

Unfortunately, a PET CT is primarily designed to look at soft tissue. If you want to get a clear picture of the bones, you really need a bone scan or targeted X-rays.

Hello everyone. We received confirmation today that my mother has lung cancer. Surgery is completely off the table because the tumor has spread to both lungs, and her overall health just isn't strong enough to handle it. Chemotherapy isn't an option either. Tomorrow, they’re performing a bronchoscopy to pinpoint the exact type of cancer. For now, the doctor advised us not to say anything to her until she’s more stable; she recently suffered heart failure, so even a sudden shock could be fatal. I find myself wondering how to process this alone—how does one face a reality where every shred of hope for a cure has vanished? Instead of praying for a recovery, I catch myself merely hoping she falls into a deep sleep and never wakes up, simply because I cannot bear the thought of watching her suffer through the excruciating pain that is inevitably coming.

boldridge3 said:Hey everyone. We just got confirmation today that Mom has lung cancer. Surgery is completely off the table since the tumor has spread to both lungs, and her overall condition isn't great. Chemotherapy isn't an option either. They’re doing a bronchoscopy tomorrow just to pin down the specific type of lung cancer. For now, the doctor told us not to say anything to her until she stabilizes. She had some heart failure, so any sudden shock could be fatal. I'm struggling with how to handle this on my own—how am I supposed to face a situation where there isn't even a shred of hope for a cure left? Instead of hoping she gets better, my only hope now is that she just falls asleep and never wakes up, because I can't bear the thought of her suffering through the intense pain that's coming.

Don't give her the whole truth. She has a sick heart, and honestly, that's enough truth for her to carry.
As far as the pain goes, that can be managed quite effectively. But since the disease is already at such an advanced stage, things take time to unfold. The real question is whether her heart is strong enough to endure the process.
I don't believe she'll die from the cancer itself. It might cause some pleural effusions that eventually speed up her heart failure, but that's about it. I don't know if that offers much comfort, but I don't think she'll suffer in the way terminal oncology patients typically do.
Try to find the strength to pull yourself together so you can live out these remaining moments peacefully and make them meaningful. As a family, there is so much you can do, and in the end, that's what matters most in life for all of us.
Hang in there; you're going to be okay. You'll probably surprise yourself with your own resilience.
🙂

p.s. Think about the actual purpose of that bronchoscopy. In my opinion, it makes zero sense. It’s just going to exhaust her and trigger anxiety and bad feelings, all just so some doctor can check a box regarding the exact stage and malignancy level. For her, that data is totally irrelevant given that her heart is failing.

They managed to complete the bronchoscopy, but she wasn't particularly rattled by it; seeing as so many people I know have gone through the same procedure lately, she just treated it like any other routine appointment. We reached a bit of a consensus that if we absolutely had to break the news about the cancer, we’d frame it as a benign growth that’s simply causing her trouble—it's a necessary white lie, because logically, she wouldn't understand how something could be "benign" when she clearly feels anything but fine. Now that they've drained that fluid, she can breathe without supplemental oxygen, and the doctor mentioned her heart function has finally stabilized back to a normal state. Right now, my primary focus is ensuring she doesn't view this hospital as her final destination, but rather as some sort of upscale hotel; she keeps insisting it feels like a stay at a resort because everyone is so attentive, the food is actually decent, and one of the nurses even brought her a TV. Plus, there's another lady in her room now, so after being alone for three days, they've become quite the pair. I'm slowly piecing the reality together in my mind, coming to terms with the fact that this is just how things go and that death is an inevitable part of the journey. At the very least, I was granted the chance to say thank you and tell her how much I love her... many people are robbed of that opportunity because life simply slips through your fingers far too fast.

boldridge3 said:They managed to get the bronchoscopy done, but she didn't really panic about it. Lately, so many people I know have had to go through a bronchoscopy that she just treated it like any other routine procedure. We made an agreement that if we absolutely have to tell her about the cancer, we’ll frame it as a benign growth that’s just causing issues—mostly because she won't understand how something can be "benign" when she feels so terrible. Now that they've drained the fluid, she can breathe without oxygen, and the doctor says her heart has returned to a "normal state." Right now, my biggest priority is that she hasn't viewed the hospital as some final destination; she actually treats it like a hotel. She keeps saying it feels like staying at a hotel because everyone is so nice to her, the food is great, and even the nurse brought her a TV. Plus, there's another lady in her room now, so they’ve become great friends after being alone for three days. I'm sitting here trying to piece things together in my head, realizing that this is just how life works—eventually, we all have to go. At least I got the chance to thank her, to tell her how much I love her... some people never get that luxury because life just slips away too fast.

I'm hoping this stability lasts long enough for her to actually start some kind of therapy. Unfortunately, that fluid buildup tends to recur, and with her, it happens with a vengeance. Once they perform the puncture, it builds back up even faster than before. I assume she's on some diuretics.
For now, I'd say this is okay. Let's just hope it lasts and remains high quality.

Hi everyone—I’ve been reading through these posts for about six months now, ever since I found out my mother was diagnosed with Stage 4 lung cancer. She’s finished three rounds of chemo, but things have taken a turn for the worse; the cancer has metastasized to her brain, and she’s lost strength on one side of her body. I sat down with the doctors, and honestly, they basically told me it’s just a matter of time. They want to move forward with radiation, but she keeps waiting for it—it's like she's stuck in limbo. The doctor mentioned they might call her in, though there's a catch: if they suspect any brain bleeding, they won't proceed with the radiation at all. It’s just... heavy. I have three kids, including a baby, and every time I visit Mom, I have to leave her behind, never knowing if it’ll be the last time we see each other. There aren't really words for what it feels like to watch someone fade away like this. I tell myself I'm preparing, but the truth is, I'm not ready. I constantly wonder how she’s feeling—if she’s sad or scared—because even now, she always greets us with a smile. I know death is coming, but she's only 56. Sorry for the venting, it’s just all hitting me at once.

wiredbear81 said:Hi everyone. I’ve been reading through your posts for about six months now, ever since I found out my mother has Stage 4 lung cancer. She’s finished three rounds of chemo, but things have taken a turn for the worse—it’s metastasized to her brain, and one side of her body is incredibly weak. I had a consultation, and they basically told me it’s just a matter of time. They’ll call her in for radiation, she’s waiting for that call... but the doctor mentioned that if they suspect any bleeding in the brain, they might not proceed with the radiation at all. It’s just devastating. I have three kids, including a baby, and every time I come to see her, I have to leave her behind, never knowing if it’s the last time. There aren't enough words to describe watching her fade away like this. I feel like I’m constantly preparing myself, yet I’m never actually ready. I find myself wondering how she feels, if she's sad... she always greets us with such a smile. My mom is only 56. Forgive me for venting, everything just hit me at once.

It’s always gut-wrenching. Age doesn't change the weight of it. Mine was dealing with a brain tumor starting at 57.
I’m certain she’s struggling.
Call the hospital every single day and stay on their case about that radiation. Brain metastases are extremely sensitive to treatment timing. Don’t sit around waiting for them to give you a ring; you be the one calling them every day until they get her scheduled. Her situation is urgent, and they have no right to strip away whatever precious time she has left by dragging their feet!