Support resources for families dealing with cancer and other serious illnesses

Nancy Thomas18 said:well, I suppose I'm doing alright as long as I'm still breathing...

We're all standing right here with you—you can do this, just hang in there.

Nancy Thomas18 said:well, I'm doing alright as long as I'm still breathing...

We're right here with you. 🙂
Hang in there. 😘

No matter how dark or hopeless things might seem, we simply cannot give up.
On Wednesday, August 20th, while we were over at the Salad, I met two kids battling osteosarcoma. One little girl was so withdrawn that it felt wrong to even pry, but the boy—he had such a vibrant, cheerful spirit that I just had to approach him. Once he stepped out of the doctor's office looking absolutely thrilled and his mom mentioned his results came back clear, I asked him about his illness. Honestly, I’ve never met a child so incredibly well-versed in their own medical condition and all those complex clinical terms, especially since he’s only about 12 or 13 years old. He had osteosarcoma in his knee, had undergone surgery, and has been going through chemo. He told me he spent about 18 months in the hospital.
A friend who was driving us said they had been sitting in a cafe—which is where he was hanging out while waiting for us, too—
and they mentioned he had dealt with metastases as well. I don't know the exact location because I wasn't really listening closely; you can't exactly bring that kind of thing up with a kid, let alone his parents.
The most important thing is that he made it through, and now it's all about the follow-up checkups.
Whenever my thoughts start drifting toward the dark side, I just picture him, smiling brightly and carrying nothing but a single crutch
which he handed off to his sister right after leaving the doctor's office.

Nancy Thomas18 said:Hey everyone, hope you're doing alright... technology can be such a pain sometimes. My computer totally crapped out on me and I was left hanging.
I actually missed my last chemo session, unfortunately... after the seventh round, the nausea and weakness were just too much to handle.
Now I’m back in for checkups, and my CEA is high again, plus my liver numbers look like they belong to an old alcoholic... I still have to go in for a CT scan with contrast, and honestly, everything is just starting to feel kind of meaningless. I even stopped taking the propolis and Enshure, and I swear it feels like someone is literally sucking the life out of me through a straw...

Look, this is just a rough patch and it'll pass. Things will get better tomorrow. That's how it worked for my husband. You just get these good days and bad days that trade places. It sucks, it really does, but it passes. Don't let it get you down.
My husband used to drink whey—just one glass a day—to help clean out his liver. It actually helped him.
We finally got the CT results back. Thank God, nothing's happening. The tumor is the exact same size (2 cm x 1.3 cm). It hasn't changed in three years. No metastasis. The abdomen looks fine.
Heart X-ray came back clear, too.
Thank God.

Nancy Thomas18 said:Hey everyone, hi from me too... technology fails sometimes, you know? My computer was acting up and I was totally stuck in a bind.
I unfortunately missed my last chemo cycle... after the seventh one, the nausea and weakness were just way too much.
Now I'm doing follow-ups and my CEA is high again, and my liver labs look like they belong to an old alcoholic... I still have a CT scan with contrast coming up, and honestly, everything is just starting to feel kind of meaningless... I even stopped taking the propolis and Enshure, and it feels like someone is slowly sucking all the strength right out of me through a straw...

I am so glad you finally checked back in!!! Don't leave us hanging in suspense like that for so long next time! 😁
I'm so sorry that the nausea got the best of you, but don't you dare give up!!! And I won't hear any of that "everything is becoming meaningless" talk!!! 🤣 Think about it, there are definitely people (your son!) and things in this world that mean you can't feel that way. Let those thoughts give you the strength to push through when things get at their absolute worst.
Hmm, it sounds to me like you might need a better reason to stop the propolis and Ensure??? Please try again—it's worth trying anything that might help. Maybe the current test results are feeling discouraging, but what would it have been like if you hadn't fought from the very beginning? I believe, it isn't easy, but that doesn't mean things can't get better!!!
Maybe try something else for energy? Hmm, maybe some green algae? That's good for the liver too... I'll send you a PM!
Anyway, I'm thinking of you, so please keep us posted! 🙂

I escaped for a little vacation for a few days so I haven't been following along with what's happening... I'll catch up...
buhtlica, please accept my sincere (and late) condolences...

Melissa Stewart said:No matter how bleak or utterly hopeless things might seem, we simply cannot afford to throw in the towel.
On Wednesday, August 20th, while we were over at the Salad, I happened to meet two kids battling osteosarcoma. One little girl was so withdrawn that it felt intrusive, almost rude, to even try and strike up a conversation. But then there was this boy—just a total ray of sunshine. Once he hopped out of the doctor's office with a grin on his face and his mom confirmed his results were clear, I just had to go talk to him. Honestly, I don't think I've ever met a child so incredibly well-versed in their own medical situation. He’s only about 12 or 13 years old, yet he was tossing around medical terminology like a seasoned attending physician. He’d been dealing with osteosarcoma in his knee, underwent surgery, and has been through the ringer with chemo. He told me he’s spent about 18 months living in the hospital. It’s one of those moments that really makes you pause and reflect.
The friend who was driving us mentioned he’d been hanging out at a cafe while waiting for us to get ready—which is exactly where he ended up sitting while we were running late.
They mentioned there were metastases involved too. I couldn't catch the exact locations because, well, I wasn't the one sitting in that consultation, and you can't exactly grill a patient about those details—let alone his parents. It’s just one of those things where you're left hovering in the dark.
The most critical thing is that he pulled it off—but now comes the real work: staying on top of all those follow-up appointments and regular checkups.
Whenever I find myself spiraling into a dark mood, all I have to do is picture him—just standing there with that grin on his face, holding nothing but a single rib.
He handed his sister whatever it was he received after leaving the doctor's office.

We can't ever just throw in the towel. We have to keep living, keep believing, and—most importantly—keep fighting.

Nancy Thomas18 said:Hello everyone from my side too... technology fails us sometimes. My computer was acting up and I was in a total bind.
I unfortunately missed my last chemo cycle... after the seventh one, the nausea and weakness were just too much to handle.
Now I'm back for follow-ups, and the CEA is high again, while my liver numbers look like those of an old alcoholic... I still have a CT scan with contrast ahead of me, and honestly, everything is starting to feel a bit indifferent. I've even stopped taking propolis and Enshure, and it feels as if someone is slowly sucking the strength right out of me through a straw...

My husband's situation is grim. The illness is almost incurable because there isn't a chemotherapy protocol yet capable of destroying his sarcoma. To make matters worse, the location of the tumor complicates everything. His primary sarcoma is located near the pericardium.

We go through crises, certainly, but we aren't giving up. We are doing everything in our power to squeeze out just a little more time—one more new day, which means everything to us. We both promised each other that we would fight until the very end. Even if we lose this battle, we will lose it with our heads held high.

Beyond the illness itself, we're being screwed over by bureaucracy. Quite often, the system essentially sentences terminal patients to death because, from their perspective, treating people in our position simply isn't "cost-effective."
However, they won't break our spirit. We keep fighting, and we refuse to let them wash their hands of us.

When I find myself spiraling into darkness and depression, working with the association is what pulls me out; it gives me the drive to actually get moving. I've met people there who truly inspire me—people who reached out with unconditional, uncomplicated friendship during my most desperate and lonely moments. Together, we are working steadily on a major project designed to help all of us. And even if things don't turn out the way I hope, something will remain behind all this grief and struggle. Just knowing that I am part of something larger gives me the strength to endure.

So, please, do not give up without a fight. You are not alone. 🙂

When we first got the diagnosis three and a half years ago, everyone had basically written my husband off. He had this tumor about the size of a man's fist that was messing with his trachea and right bronchus. It was brutal. He couldn't stop coughing, he was choking, and he’d be hacking up fresh blood. It was a nightmare.
Chemo and radiation absolutely kicked his ass. We went through everything: the pain, the vomiting, the diarrhea, sores, high fevers... just all of it. But we just took it one thing at a time, dealing with every single symptom as it hit us.
As for the bureaucracy? Forget it. There wasn't a damn thing I could do to get them to help. On top of everything else this illness threw at us, those people just made life harder. Instead of actually solving problems—which is literally what they get paid to do—they just stood in the way.
No, seriously, they’re just cold, heartless bureaucrats who act like they’re invincible. Like they think sickness can't touch them. But honestly, who knows if you’ll even wake up healthy tomorrow?
If there's one thing I've learned, it's that when you're fighting a disease, nobody is coming to save you except your family.
To keep things moving for my husband, I always have to stay one step ahead of the doctors. I pretty much jump in and present them with a finished plan before they even realize what's happening.
My husband is doing great now. He looks good, though he gets some bone pain every now and then (I figure that, along with his moodiness, is just the weather changing). He moves around fine, drives his car, goes fishing... If you didn't know his history, you'd never guess he ever had cancer. And man, they really thought he was a goner!

slyseal28 said:My husband's situation is incredibly tough right now. The illness is practically incurable because there isn't any chemotherapy out there yet capable of destroying his specific sarcoma. To make matters worse, the location of the tumor makes everything significantly more complicated; his primary sarcoma is located near the pericardium.

We hit our low points, sure, but we aren't throwing in the towel. We are doing absolutely everything in our power just to squeeze out a little more time—just one more day, which feels like everything to us. We’ve both made a pact to fight this until the very end. Even if we do lose this battle, we intend to do it with our heads held high.

Beyond the disease itself, we're dealing with the headache of bureaucracy. It often feels like the system pre-judges critically ill patients, essentially writing them off because treating cases like ours isn't "cost-effective" for them.
But honestly? They won't shake us. We keep fighting, and we refuse to let them give up on us.

For me, working with the association is what pulls me out of the darkness and depression; it gives me the momentum I need to actually get moving. I've met people through this who truly inspire me—people who reached out with unconditional support and friendship during my loneliest moments of despair. Together, we’re slowly chipping away at a massive project designed to help all of us. And even if things don't turn out exactly how I’d hope, there will be something left behind after all this grief and struggle. Just knowing I’m part of something bigger gives me the strength to keep going.

So, please, don't give up without a fight. You aren't in this alone. 🙂

You are such an incredibly strong woman. I truly admire your resilience; seeing your strength helps fuel my own fight alongside my dad against this awful disease.

Lisa White54 said:When my husband was first diagnosed three and a half years ago, the doctors had basically written him off. He had a tumor about the size of a man's fist that had invaded his trachea and the right bronchus. It was brutal—he couldn't stop coughing, he was struggling to breathe, and he was coughing up fresh blood. It was a nightmare.
The chemo and radiation were incredibly hard on him. We dealt with everything: the pain, the nausea, the diarrhea, mouth sores, high fevers... honestly, the whole works. But we just took it one step at a time, tackling every single symptom as it hit us. One hurdle after another.
As for the bureaucracy? There was absolutely nothing I could do to change them. On top of all the physical toll the illness took, they made things unnecessarily difficult. Instead of actually trying to solve problems, they just stood in the way—which is absurd, considering that’s literally what they get paid to do!
No, they aren't just inefficient; they are cold, heartless bureaucrats who seem to think illness is something that only happens to other people. But who can say for certain they’ll wake up healthy tomorrow?
If there is one thing I've learned, it's that when you're fighting a disease, nobody is going to come to your rescue except your family.
To make sure my husband got what he needed, I always had to stay one step ahead of the doctors. I'd jump in and present them with a finished plan before they even knew what hit them.
And now? My husband is doing great. He looks good, though he gets some bone pain occasionally (which, along with some irritability, I attribute to the changing weather). He moves normally, drives his car, goes fishing... Honestly, if you didn't know his history, you would never guess he ever had cancer. And he was supposed to be a lost cause!

Thank God he's doing better; that is such wonderful news.
Hang in there—we are all rooting for you.

It’s a close family member,
colon cancer with metastases
to the liver—we just found out this morning.

The tests were done at the Cross in Split
(the old military hospital).
There's a CT scan tomorrow, and then we'll have the full details....

Since I live in New York City, and this involves
my stepfather, I’d really prefer if
his treatment could take place here in New York City.

So, I’m asking anyone who has any
advice regarding choosing a hospital or a doctor
here in New York City for cases like this
(feel free to PM me).

Also, it would mean so much to hear from someone
who has dealt with this specific type of cancer in their family.

Thanks in advance.

Karen Torres17 said:We’re dealing with a close family member here;
colorectal cancer with liver metastases
was confirmed this morning.

The initial testing was done at the Cross facility in Split
(that former military hospital).
Tomorrow we have the CT scan, and then we'll have the full details....

Since I live in New York City, and this involves
my stepfather, I would really love for his
treatment to take place here in New York City.

So, I am asking anyone who might have some
advice regarding choosing a hospital or a specialist
here in New York City for cases like this
(feel free to send me a private message).

It would also mean a lot to hear from someone
who has dealt with this specific type of cancer within their own family.

Thanks in advance.

My father is battling colorectal cancer with liver metastases.
I assume my stepfather will need surgery.
If the metastasis has taken hold of both lobes of the liver, surgery might not be an option; in that case, you'd likely just focus on managing it through chemotherapy.
Having more detailed results would definitely help—the big question is whether it has affected both lobes.

cosmicviper76, thanks for getting back to me,
but they haven't given us any specifics yet, meaning
the scans we need for answers
aren't finished (tomorrow is the CT scan).

I'll write up a more detailed update once I have
more information in hand.

Could someone please DM me
with recommendations for hospitals and doctors
in New York City who specialize in
this specific type of carcinoma?

Hey,
First time posting here, looking for some real talk. Here’s the deal: two months ago, my mom’s GP found a tumor mass in her lungs and sent her over to Jordan. They diagnosed it as lymphoma and sent samples out for consultation. Three different labs all came back with the exact same thing: non-Hodgkin B-cell lymphoma. So, we move on to hematology, right? They run a whole battery of tests and then basically tell us she doesn't even have lymphoma because their pathologist "can't confirm it." According to them, she’s perfectly healthy. Now we’re sitting here wondering who the hell is crazy and who’s actually sane. She has an 8.5*5.5 cm tumor in her lung, she's running fevers, she's exhausted, has zero energy—the pulmonologists say it's not a lung issue, and hematology says it's not a blood issue. Then whose problem is it? And yeah, just to be clear, the cytology report explicitly showed malignant cells.
Now we're stuck wondering what the next move is. Should we keep bouncing from hospital to hospital or just go private? Anyone got any advice? Helppppppp

Karen Torres17 said:cosmicviper76, thanks for getting back to me,
but they haven't actually given us the specifics yet—meaning,
the test results we need to make sense of this
aren't even in yet (there’s a CT scan scheduled for tomorrow).

I'll post a more detailed update once I have
a bit more information to work with.

Also, if anyone could send me a private message with
recommendations for hospitals and specialists
in New York City who specialize in
this specific type of carcinoma, I'd really appreciate it.

I honestly don't know who I'd suggest to you. My dad had surgery over at Mercury, and frankly, we weren't exactly thrilled with the doctor handling everything, so I don't feel comfortable giving out a specific recommendation. That said, word on the street is that Rib is a better option than Mercury, so it might be worth looking into them instead.
Once you get those detailed results back, please do share; there are plenty of us here, and we'll all do our best to support you however we can.
Until then, hang in there and take care.

Taylor Kelly9 said:Hi there,
I’m new to this forum, and honestly, I'm just here desperately hunting for some direction. Here’s the mess we’re dealing with: about two months ago, my mom was found to have a tumorous mass on her lungs. Her primary care doctor sent her over to Jordan to get checked out. There, they diagnosed it as lymphoma and sent samples off for consultation. Three different institutions reviewed those samples, and all three came back with the same verdict: it’s non-Hodgkin lymphoma. So, the next logical step was hematology. They ran every test imaginable, only to turn around and tell us she *doesn't* have lymphoma because their pathologist "can't confirm it," essentially claiming she's perfectly healthy. Now, we're sitting here wondering who's actually losing their mind—the doctors or us. She has an 8.5 x 5.5 cm tumor on her lung, she’s running fevers, she’s exhausted, and she has zero energy. To make matters worse, the pulmonologists say she isn't a respiratory patient, while the hematologists claim she isn't a hematology patient. Well, if it's neither, then whose problem is it? And just to be clear, the cytology results explicitly showed malignant cells.
We are completely lost on what to do next. Should we just keep bouncing from one hospital to another, or should we look into private specialists? Does anyone have any advice? Please, help!

You’ve got to go from doctor to doctor, door to door. If you have to hit up private clinics to get actual answers, do it. But the most important thing is that you absolutely have to understand exactly what you're dealing with. Whatever you do, do not give up.
At the end of the day, someone has to figure out what is actually happening to her.

cosmicviper76 said:I honestly don't know who I could recommend to you. My dad had surgery at Mercury, and we weren't exactly thrilled with the doctor who handled everything, so I can't give you a solid referral. However, word on the street is that Rib is better than Mercury, so it might be worth looking into them instead.
Once you get some more detailed test results back, please post them. There are plenty of us here, and we'll all do whatever we can to help you out.
Until then, take care of yourself.

My gut feeling is also leaning toward Rib, but we really need to
wait until we see the full breakdown of those tests from Split.

I'll definitely check back in soon;
this morning's news was a total shock.

Karen Torres17 said:My initial gut feeling also points toward the Rib, but we absolutely need to
get a look at the detailed test results from the hospital in Split.

I’ll definitely check back in later;
this morning's news was a total bombshell.

I can only imagine how much of a shock it was.
It hit us just as hard, especially since Dad wasn't even feeling anything—he was just going in for a routine checkup when they suddenly noticed it.
Just hang in there and stay right by his side; in moments like this, that's truly everything.

Anyone got any leads on private doctors? Who's actually good at diagnostics in this area? Like, who can I trust to get it right the first time?

Taylor Kelly9 said:Does anyone have any recommendations for private clinics? I'm looking for somewhere really reliable for diagnostics.

You might want to try looking into a private outpatient center like one of those high-end wellness clinics or perhaps a facility covered by Blue Cross Blue Shield, because they often have top-tier specialists who are essentially being pulled directly from the major hospitals to provide better care.
That is exactly what we did when we sought out an oncologist through our Blue Cross provider.
Hang in there!