Resources and support for families dealing with cancer and serious illness

Tomorrow, there’s an article hitting the presses over at The Miami Herald regarding www.carcinoms.com

I haven't had a chance to see what the reporters actually put down on paper yet, but I'm crossing my fingers that they manage to stay objective. Let's hope for the best.

No giving up here—that’s just not how we roll. Hang in there!!

slyseal28, congrats! I honestly think we're watching something massive take shape here—maybe even bigger than any of us can wrap our heads around right now.
It all started with me giving this thread a little nudge, then you kicked things up a notch with a new page, and now we’ve actually made it into the news... you see how those dominoes fall? It's snowballing, and it's only getting bigger.👍

FighterGirl, I might be able to help out with the website if you think some info on stomach cancer would be useful. My goal would just be to help people—even those who don't think they're at risk—know when they actually need to go in for a gastroscopy. To be honest, my husband was diagnosed with this when he was under 40, and the only thing that caught it was a gastroscopy and biopsy; every other test came back perfect. One doctor actually told us it showed up "too early." Apparently, the cancer hadn't even penetrated the stomach tissue yet; it was just on the lining. So, that’s really the extent of what I can offer, along with some dietary tips we learned from our nutritionist.
Good luck with the site. I'll be following along!

slyseal28 said:There is an article coming out tomorrow in the Los Angeles Times regarding www.carcinoms.com...

I haven't had a chance to see what the reporters actually wrote yet, though I am holding onto the hope that the coverage will be somewhat fair. Fingers crossed...

Well done! I just finished reading the article in the paper, and my mom sends her best to everyone here! We are having an incredibly difficult day—my father’s health took a sudden turn for the worse, and we were all struck by a wave of panic thinking he might be facing similar issues... Later today, I plan to show Mom www.carcinoms.com; hopefully, she will start to get used to the idea slowly, I'm sure...

Hang in there and keep pushing forward... Kisses from San Francisco!

Nancy Hernandez43 said:Way to go! I just finished reading the article in the paper, and my mom sends her best to everyone here! We’re having a pretty rough day today—Dad isn't feeling well, and we've all been spiraling a bit worrying about him too. Later today, I'm going to walk Mom through www.carcinoms.com so she can start wrapping her head around everything. I'm sure she will!

Hang in there and keep pushing forward! Sending love from San Francisco!

😲
Hopefully it’s nothing serious; maybe the weather change is just getting to him.😕
Keep us posted, we're thinking of you.😢

slyseal28 said:There’s an article dropping tomorrow in the LA Times about www.carcinoms.com

I haven't seen what the reporters actually wrote yet—fingers crossed they play it straight... keep those fingers crossed for me!

Major props. It’s about time someone built something like this for all of us. I'm seriously hoping this sparks some actual awareness among doctors—because let's be real, some of them make massive, unforgivable mistakes when dealing with cancer, especially with younger patients who, unfortunately lately, seem to be getting hit just as hard as the elderly.

Best of luck.

Angela Wright said:My mom passed away peacefully this morning.
I just wanted to say thank you from the bottom of my heart for all the support you’ve shown me during this incredibly difficult chapter of my life.
I love you guys so much! May God bless you all in your own struggles—just keep pushing forward!

Dear Angela, I am so incredibly sorry for your loss; my heart truly goes out to you.
Your mother was so blessed to have such a beautiful, loving angel by her side through it all.
The bond you two shared is something that can never be erased...
Please know that I'm keeping you in my prayers.
Stay strong, dear!

Dear Jane,

My deepest condolences...

Megan Lewis said:He was basically discharged just like your mom was—they didn't even bother sending him to an oncologist! I actually took his test results directly to the doctor myself, and only then did the guy finally agree to start him on treatment.

Back in 1999, my grandma was diagnosed with lung and bronchial tumors in Smalltown, USA.

Diagnosis: Ca planocellulare pulm. dex.
Meta lyphonodorum mediastini lat. dex.
St. post mammectomiam dex. a.a. XII

Even though the discharge papers don't spell it out clearly, I looked up this diagnosis online and found out it’s a lung tumor (stage 3b) that had already spread to the mediastinal lymph nodes.
The doctor straight-up told us he wouldn't even recommend any kind of therapy because there was no hope left, and honestly, treating something at that stage might just speed up the whole process. As horrible and cold-hearted as that sounds to a regular person—like they're just tossing a patient aside—I have to assume these doctors know best since they deal with this nightmare every single day. He even mentioned that Grandma probably shouldn't have gone through with the bronchoscopy and tissue biopsy, because those procedures can aggressively jumpstart the malignant process. Without them, she might have squeezed out another year or so, especially since her type of carcinoma wasn't quite as aggressive as something like small cell lung cancer.

Anyway, my heart goes out to Jane and Nema for their loss. It feels like, unfortunately, no matter how much heart you put into it or how strong your will is, this disease still wins in the end. When people do make it through, it's like they go to Vatican City to light a candle and feel like they've been reborn...

Later, everyone.

jadetinker42 said:.

On a serious note, my heart goes out to Jane. You can't just surrender when you lose people you love. It honestly feels like, despite giving it everything you have and fighting with every ounce of willpower, this disease often wins in the end. Those who make it through sometimes feel like they need to go light a candle at Vatican City just to feel like they've been reborn...

Best to everyone.

Yeah, that’s how it looks, but it doesn't have to be that way. I lost my mom, but I still believe it’s possible to beat any form of cancer.
My mother was operated on by a top-tier neurosurgeon—the absolute best in the field—and he gave us a grim prognosis of maybe one year left. Instead, she fought for nearly two and a half years. We might have had even more time if they hadn't lied to us and kept it quiet that we could continue therapy with Unknown, simply because Medicare refuses to foot the bill.
Healing is a whole process; it's not just about the medical side of things, it involves a massive range of other equally vital factors. Every single moment I spent with my mom was precious, and if there were any way to squeeze out more time, we would have taken it. My mom survived those two-plus years solely because of the highest quality palliative care available at home. She passed away in her own house, full, clean, and comfortable, held in the arms of her daughter and husband. We are all limited in this life, which is why I’ll be lighting a candle at Vatican City, praying to God for the mercy to eventually pass away under those same good conditions. It isn't all about the drugs; there is so much power in love, faith, hope, and care.

Thank you both for your condolences.

Angela Wright said:😲
I suppose it isn't anything major, perhaps just a bit of weather affecting things...😕
Let us know what happens, we are all thinking of you.😢

Here I am... and honestly, there are no answers. I spent half the day hooked up to an IV drip, yet the dizziness simply refuses to subside. The CT scan, the EKG... everything came back perfectly fine.

She’ll be heading back in a few days. My own assumption is that this morning was merely the fallout from stress and a spike in blood pressure. I truly doubt it is anything grave, as we are simply not prepared for such news...

Mom is doing alright, though she is in total disbelief that any of this is happening. I wasn't online earlier to update you all at a more reasonable hour.

Angela, thank you for checking in. How have you been? You are constantly in my thoughts... kiss

Angela Wright said:It isn’t just about the medication; there is so much found in love, faith, hope, and genuine care...

It is difficult to pinpoint the exact recipe for winning a battle like this. What truly matters is knowing that every possible effort was made...

Nancy Hernandez43 said:Here I am... and honestly, who knows. She spent half the day on an IV drip, but the dizziness just won't quit. CT scan, EKG... everything came back fine.

She’s heading back in a few days. My guess is this morning was just a massive spike from stress and high blood pressure. I really doubt it's anything major because, frankly, we aren't ready for that kind of news.

Mom is doing okay, though she can't quite wrap her head around all of this. I wasn't online earlier to give you guys a heads-up at a decent hour.

Angela Wright, thanks for checking in. How are you holding up? You've been on my mind constantly... kiss

I'm doing better. The initial shock has finally worn off. We're picking up the urn today and heading to St. Louis, where we'll lay her to rest in the family plot tomorrow. To be honest, I'm dreading going through the whole thing again—all the funerals, the eulogies, reliving those final moments... I'd skip it all in a heartbeat if I could, but I owe it to our relatives down south; they're older and couldn't make the trip up to NYC.
Dad, Goga, and I have already started looking toward the future. Dad will be home for two weeks now. He still has some vacation time left, and he seriously needs to just sit down and decompress. We're going to use this time to sort through her things, give the apartment a deep clean, repaint her room, and reorganize the layout. There's a lot of work ahead, especially since we haven't dealt with this kind of stuff in two years.
Life moves on. Does it hurt? Yeah, it hurts. But Mom hasn't truly been *with* us for a long time; she was just existing in a vegetative state. If anything, the pain is sharper now because the hope is finally gone.

I still have the box of Prozac left, and I’d much rather donate it to someone in Canada or Mexico. Over there, you have to pay for everything out of pocket since there aren't any subsidies from their insurance providers, and a single carton costs about $23 if I remember correctly. So, if anyone wants it, shoot me a PM and I'll make sure it gets to someone who actually needs it.

I see there was a lot of chatter over the weekend... some good, some bad.
Not much good news on our end, though. Mom’s chemo got pushed back again because her blood work looks terrible; her platelet count is bottoming out around 50, so I am definitely open to any advice on how to get those numbers up! She’s also having a harder time putting coherent sentences together lately.😢

Last Night, we got the heartbreaking news that our aunt's sister in Miami passed away from breast cancer complications.

On a brighter note, I’m glad to see the new website is finally getting moving, and it’s heartening to see that life keeps moving forward for all of you who have lost loved ones.👍

Nathan Bailey, how is your husband doing??? You haven't said a word about how your fight is going.

feralwolf24 said:slyseal28, I might be able to help out with the site if you think it would be useful regarding stomach cancer. Specifically, I can help raise awareness so people who don't even consider themselves high-risk know when they really need to push for a gastroscopy. To give you some context, my husband—who is under 40—went through this exact thing. He was only diagnosed because of a gastroscopy and biopsy; every other test came back perfect. It turns out, according to one doctor, he caught it "too early." The cancer hadn't even penetrated the stomach tissue yet; it was just on the lining. That’s the extent of how much I can contribute, along with nutritional advice based on what our nutritionist recommended.
Good luck with the page. I'll be following!

I'm a bit late to the party here...

Actually, please feel free to post anything you think might help someone. If you're up for it, sharing your husband's story here on the forum would be incredibly valuable... and dietary tips are always more than welcome. I'll see you all over there. Sending my best to everyone. 🙂

Hello everyone!
About four weeks ago, my father-in-law was told he had a brain metastasis accompanied by significant edema. His entire left side had become somewhat paralyzed, given that the issue was located on his right side. We reached out to the top specialists, and they explained that traditional surgery wasn't an option because the risk of permanent paralysis on his left side was too high; instead, they decided to essentially "kill" the metastasis using Gamma Knife treatment.
Leading up to the procedure, we were warned that there would be a short-term decline, and honestly, he felt terrible even before the surgery itself—he lost the ability to speak, eat, use the restroom, or walk at all.
The most unsettling part of this whole ordeal was that they couldn't find the primary tumor. You see, my father-in-law is a bit of a hypochondriac with plenty of resources, so he undergoes full checkups twice a year and gets MRIs from time to time, and everything has always come back perfectly clear. When the doctor reviewed his medical history, he was absolutely stunned.

Since the procedure, he has been taking dexamethasone, and remarkably, there hasn't been any decline; he looks healthy, hasn't lost weight, and his appetite is excellent.

We couldn't rest easy, so we took him to Denver for a PET/CT scan, hoping that if anything was hiding somewhere, they might finally locate it.
The results came back this morning, and they were perfect. Nothing was found anywhere. I am still in shock. My father-in-law has become like a father to me over the years.
I believe in miracles, and I have been lighting candles to St. Anthony every single day, but I can't help but wonder—where did that edema in his brain come from? Can benign tumors cause that kind of swelling?
What are your thoughts on this? Has anyone else gone through something similar?

wanderingranger3 said:Hi everyone!
Four weeks ago, my father-in-law was told he had a brain metastasis along with massive edema surrounding it. His entire left side was slightly paralyzed, given that the lesion was on the right side. We reached out to the top specialists, and they told us traditional surgery wasn't an option because the risk of leaving him permanently paralyzed on his left side was too high. So, they decided to essentially "kill" that brain metastasis using Gamma Knife.
Before the procedure, they warned us there would be a short-term decline, and honestly, he was doing terribly even before the actual treatment: he couldn't talk, eat, use the bathroom, or walk at all.
The most infuriating part of this whole ordeal was that they couldn't find the primary tumor. See, my father-in-law is a total hypochondriac with plenty of money, so he literally gets full checkups twice a year—including MRIs from time to time—and everything always comes back perfect. When the doctor saw his medical history, he was absolutely floored.

Since the procedure, he’s been on dexamethasone, and there hasn't been any decline at all. He actually has color in his face, isn't losing weight, and his appetite is great.

We couldn't just sit still, so we took him to Denver for a PET/CT scan, hoping that if there was anything else hiding somewhere, they might finally locate it.
The scan happened this morning, and the results were incredible. Nothing. Absolutely nothing found. I’m still in shock. My father-in-law is like a father to me; he’s become that person over the years.
I believe in miracles. I’ve been lighting candles to St. Anthony every single day, but I can't help but wonder—where did that brain edema come from then? Can benign tumors cause that kind of swelling?
What do you all think about this? Has anyone gone through something similar?

Keep lighting those candles and thank God!
I don't know if benign things cause edema, but probably yes—the biological principle is basically the same!
Am I understanding this correctly? Did the metastasis actually disappear??
My dad has malignant ones; the primary was in his kidney, which was removed, but unfortunately, it was too late!
Wishing you all the very best🙂 it’s wonderful to hear something positive in a sea of darkness..

Amy Hayes28 said:Keep lighting those candles and keep thanking God!
I wonder if good deeds truly create an eden? Perhaps they do, since the underlying principle feels much the same!
Did I understand correctly that the metastasis has vanished??
My father is battling something malignant; the primary tumor was on his kidney, which they removed, though perhaps it was a bit too late!
Wishing you all nothing but the best🙂 it is such a relief to hear something positive amidst this sea of darkness..

The metastasis is actually still there, but the results suggest it isn't doing anything anymore—how can one even put that into words? It’s inactive, essentially dead. If there was any doubt at all about whether it was a metastasis, Paladino and Heinrich certainly didn't hesitate; they were sure of it. We didn't have a biopsy during the Gamma Knife procedure, after all. Or perhaps doctors simply try to protect themselves by anticipating the worst-case scenario before it even happens.
I honestly don't know what to think anymore🤷

wanderingranger3 said:The metastasis is still technically there, but the scan shows it’s no longer active. I don't quite know how to put it—it's dormant, dead. Even if we debate whether it was truly a metastasis to begin with, Paladino and Heinrich weren't questioning that; they were certain. We didn't get a biopsy during the Gamma Knife procedure, though. Perhaps the doctors just want to be cautious and prepare for the worst-case scenario.
I honestly don't even know anymore.🤷

How can a benign tumor have metastases?

You mentioned the PET/CT came back good, which feels strange... what exactly is the diagnosis?