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

When it comes to how doctors communicate, you’ve hit the nail on the head. It’s either they assume you understand all the medical jargon perfectly, or they think you shouldn't be burdened with the details at all. Either way, you end up spiraling, trying to make sense of whatever wild theories you pick up from some random corner of the internet or a friend who thinks they're an expert.
In our situation, we were dealing with a super rare type of carcinoma in situ—something our oncologist hadn't even encountered before. There are probably only a handful of research papers published worldwide on the subject. Honestly, until we finally untangled the whole mess, the stress was absolutely brutal. That’s why I keep bringing up the need for psychological support. In those moments, we desperately needed someone to talk to.

I have about twenty boxes of strawberry Ensure Plus left. They’re good for another two months, so if anyone could use them, I’m happy to give them away for free—just send me a private message. (Washington, D.C.)

Good evening, everyone... If someone had told me years ago that I’d end up posting on a forum like this, I probably wouldn't have believed them, but I guess it's just more proof that nothing in this life is ever really certain, is it? Anyway, I won't drag this out too much, but I wanted to try and share what we're going through with all of you, hoping maybe someone here has walked a similar path or might have some kind of useful advice to offer. Back at the end of July 2014, my father was diagnosed with malignant melanoma. Honestly, I don't have all the medical reports right here in front of me to give you every single precise detail, but I'll try to be as specific as I can. Right after his appointment with the dermatologist, he went straight into surgery that very same day; they removed everything down to the muscle in the spot where the mole used to be. About seven days later, the pathology report came back, and it said it was nodular melanoma, 5mm thick, with vertical growth... T4b... He seemed to recover just fine after the initial surgery, only for us to find out in early December that they had to remove all the lymph nodes under his left armpit... specifically 14 of them, three of which were positive, "infected" by those cells...
He’s seeing the oncologist tomorrow to get more detailed information... consultations and all that sort of thing.
After that first surgery in July, the whole family just refused to accept the reality that this was something "serious"... I mean, okay, it happened, it's been surgically removed, and that's that, right? We even overhauled our entire lifestyle—healthier eating, less stress, taking it easy, spending more time outdoors... he actually looked great, he even put on some weight. So, when this discovery hit in December, it was a massive shock, at least for me. I started digging into melanoma research and saw people calling it the "silent killer," which felt like the perfect answer to my own question: how can someone look so healthy while something like this is hiding inside them, completely invisible to the naked eye?

My question is, does anyone here have personal experience with this disease, and what are the typical prognoses? After these lymph nodes come back positive, does something worse inevitably follow, or can things be stopped right here? And is it true that for patients in this situation, the maximum prognosis is often cited as five-year survival?

Sorry again for being so long-winded... I haven't had a chance to catch up on the previous posts yet, but I want to wish all of you the very best. I hope things get easier for you and your families. Best regards. 🙂

cosmicjackal4 said:Good evening, everyone... If someone had told me I’d end up posting on a forum like this, I wouldn't have believed them, but I guess life never gives you a guarantee on anything. I won't waste your time, but I want to share what we're going through in the hopes that someone here has walked a similar path or can offer some actual, useful advice. At the end of July 2014, my father was diagnosed with malignant melanoma. Honestly, I can't handle the pathology reports right now to give you every technical detail, but I'll be as specific as I can. Right after the dermatologist saw him, he went straight into surgery that same day. They cut everything out down to the muscle where the mole used to be. Seven days later, the results came back: nodular melanoma, 5mm thick, vertical growth... T4b. He seemed to recover fine from the surgery, only for us to hit a wall in early December when they had to remove all the lymph nodes under his left armpit—14 of them, and three were positive, meaning those cancer cells had already moved in.
He's seeing the oncologist tomorrow for the deep dive... consultations and the whole bit.
After that July surgery, our whole family just refused to accept how serious this actually was. We thought, "Okay, it happened, it's been surgically removed, case closed." We even overhauled our entire lifestyle—better diet, less stress, more downtime, spending more time outdoors... he actually looked great, even gained some weight. That’s why this discovery in December hit me like a freight train. I started digging into melanoma research and saw people calling it the "silent killer." It perfectly answers my question: how can someone look so healthy while something like this is hiding inside them?

My question is, does anyone here have personal experience with this? What are the actual prognoses? Does having these positive lymph nodes mean something much worse is coming, or can we stop it right here? Is it true that for patients in this situation, the five-year survival rate is essentially the ceiling?

Sorry for the long vent... I haven't had a chance to catch up on previous posts yet, but I'm wishing you all the very best. I hope things get easier for you and your families. Best regards. 🙂

Unfortunately, you're dealing with a pretty aggressive form of cancer that tends to be resistant to chemotherapy. In many cases, treatment options are limited mostly to surgical intervention, and the best outcomes are seen in patients where the disease hasn't spread to distant organs.
Survival and how long someone holds off the disease is entirely individual, though the averages you found online are generally accurate. There are people who live from one clinical study to the next. One famous American journalist managed to live another 13 years following a diagnosis like this.
There's nothing to do but take it one day at a time and deal with things as they develop. You can't predict the future, and honestly, you shouldn't try to.

Angela Wright said:It’s pretty grim, honestly—we’re looking at a particularly aggressive strain of cancer that just doesn't seem to care about chemotherapy. It’s one of those situations where the chemo hits it and nothing happens, which is terrifying to think about. Because of that, the treatment options have been narrowed down significantly, mostly leaving surgery as the primary way forward. At this stage, the only real glimmer of hope lies with the patients who haven't seen the disease spread to other parts of the body yet; if it hasn't metastasized, they actually have a decent prognosis, but otherwise, the outlook is heavy.
Survival and how you fight back against this disease... it’s such an incredibly individual thing, isn't it? You can look up all the averages you want on the internet, but those numbers are just abstractions, really. They don't account for the person sitting right in front of you. There are people out there who basically live one study at a time, jumping from one clinical trial to the next, just trying to stay ahead of the curve. I actually remember reading about this famous American journalist who managed to navigate it all that way—he essentially lived off the progress of new research and ended up gaining another thirteen years of life because of it. It makes you wonder, doesn't it? How much of it comes down to the science, and how much is just that stubborn, unpredictable human element?
Well, there's nothing left to do but take it one day at a time and just deal with whatever situation decides to show up on my doorstep next. You can't exactly see what's coming around the corner, can you? And honestly, maybe it’s better that way—maybe we aren't actually supposed to know what's ahead.

Yeah, exactly... just taking it one day at a time, I guess. We'll just have to see what tomorrow decides to throw our way, won't we?

So, they finally sat him down today and told him that starting next week, he’s kicking off some kind of combined therapy—radiation mixed with something else, I think. We're also working on boosting his immune system, which is just one more thing on the endless to-do list. Honestly, thank God this isn't what we're dealing with permanently, but I suppose you can't fight reality, right? As Charles Darwin once said...

It’s funny how people always talk about strength or being the smartest person in the room like those are the things that actually matter in the end, isn't it? But if you really sit back and look at how the world works, you realize that neither the strongest nor the brightest necessarily come out on top... it's always just the ones who can pivot and adapt when everything starts shifting around them.

And I totally blanked on asking this, but is it actually true that when adenocarcinoma takes on that diffuse infiltrative form, it just sits there and refuses to budge for chemo or radiation?

cosmicjackal4 said:Exactly... just taking it one day at a time, and we'll see what tomorrow brings.

The doctors told him today that he'll be starting some kind of combination therapy next week—radiation and a few other things... We're focusing heavily on boosting his immune system right now. We're staying positive and hoping this treatment keeps him steady, but we're just rolling with the punches. It reminds me of something Charles Darwin once said:

"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is most adaptable to change."

You might want to ask the doctor if his father could potentially be a candidate for an Opdivo + Yervoy clinical trial.

Richard Sanders7 said:Maybe ask the doctor if your dad might be a candidate for an Opdivo + Yervoy clinical trial.

They’ve only really brought up Zelboraf to us, but apparently he has to undergo DNA testing first just to see if he actually has the specific mutation that the drug targets, right? Since we're over here in Canada, they haven't even mentioned anything like that to us... which makes me wonder, does anyone here actually have any experience dealing with this kind of thing?

cosmicjackal4 said:They only mentioned Zelboraf to us, but they said a DNA analysis has to be done first to see if the specific mutation is actually there for the drug to work on. Since we're coming from Canada, they hadn't really brought that up yet... Does anyone have any experience with this? What's the deal?

What you're looking at is a combination therapy that is still being validated, but honestly, the Phase I and II clinical trial results for patients with locally advanced or metastatic melanoma look incredibly promising. On average, survival rates have been about four times longer compared to what we've seen with the previous gold standard (which was just ipilimumab alone). You can read more about the specifics here.

If you want to dig deeper, you can find information regarding all the various studies related to advanced melanoma here.

lonesailor36 said:I actually forgot to ask—is it true that diffuse infiltrative adenocarcinoma doesn't respond to chemo or radiation?

Look, all tumors respond to radiation; it’s actually one of the best ways to kill them. The real issue isn't whether it works, it's that you can't just blast an entire body with radiation to hunt down every single stray cell. However, when dealing with primary sites, radiation remains the gold standard therapy.
It's also a mistake to think all adenocarcinomas are cut from the same cloth. A lot depends on the tissue of origin (like the lungs versus the colon, for example), the grade of malignancy, and the stage of the disease. You can't just jump to a broad conclusion without looking at all those factors together.

Thanks a million for the reply!

Hey there
Does anyone have any experience with or info on this drug called GA-40?
I stumbled upon it here
What's the deal with this site? Does anybody know anything about it?
Thanks

Melissa Long33 said:Hi there,
Does anyone have experience or any actual info regarding a drug called GA-40?
I found it over here removed link
What kind of site is this? Does anyone know anything about it?
Thanks

The site is basically saying, "I'll sell you smoke and mirrors, and I'll make a killing doing it." Simple as that. Stay far away. This looks like a blatant attempt to bridge the gap between mainstream medicine and "alternative" therapies. To those who actually understand how this works, the motive is obvious. You can't really reconcile alternative medicine with traditional science; if it were truly in harmony with established protocols, it wouldn't be considered an alternative anymore. In my book, "alternative" refers to anything that lacks three-phase randomized controlled trials—in vitro, in vivo, and clinical studies—to prove it actually works. That’s where this whole concept falls apart. It's just a fresh way to bait people who want standard medical care but feel the need to say they're "open to everything" that might help.

PubMed is the gold standard. About 90% of all significant scientific research globally concerning new drugs or substances that might treat a disease is published there. If you stumble upon something that catches your eye, your first move should always be to look it up on PubMed.

Thanks, Ivana
We got some heavy news a few days ago. Here’s the deal: last year my mom was diagnosed with breast cancer. She went through neoadjuvant therapy—basically 6 cycles of chemo using the FAC protocol, followed by a mastectomy and radiation.
The latest CT scan wasn't great. It showed potential metastatic changes in the temples and some focal lesions in her lungs, which likely look like secondary deposits. We had a tumor board meeting scheduled immediately, and they decided on this: palliative radiation plus 4 more cycles of chemo (Taxotera, Carboplatin, and Zometa). Just a heads up, Mom is HER negative, specifically HER (1+). Her CA-15-3 tumor marker is actually within the normal range.

So, here’s the thing—since our healthcare system is such a mess, nobody wants to give us straight answers. I have a thousand questions I need answered because, at the end of the day, I have to organize my entire life and this whole fight based on the diagnosis and the prognosis. Can someone please, without sugarcoating anything, give me a rough idea of how things stand? And what about this word "palliative"? I know that in a loose translation it means managing pain and improving quality of life, but honestly, every hair on my head stands up when I hear it. It feels like some kind of "hospice ointment." Does it really just mean that? Like we can't actually do anything except manage the pain? If that's the case, why do chemo at all? Has anyone else gone through this? What were your experiences?

Melissa Long33 said:Thanks, Ivana
We received some heavy news just a few days ago. Last year, my mom was diagnosed with breast cancer. She went through neoadjuvant therapy (6 cycles of chemo using the FAC protocol, a mastectomy, and radiation).
The latest CT scan wasn't good; it showed potential metastatic changes in the temples and focal lesions in the lungs, which are most likely secondary deposits. A tumor board was convened immediately, and they decided on the following: palliative radiotherapy and 4 cycles of chemo (Taxotera, Carboplatin, Zometa). Just a note that Mom is HER negative, specifically HER (1+). Her CA-15-3 tumor marker is within normal limits.

Now, because our healthcare system is such a disaster, nobody will give us straight answers. I have a thousand questions I need answered because, ultimately, I have to organize my entire life and this whole fight based on the diagnosis and prognosis. Can someone—without sugarcoating it—give me a rough idea of how things actually stand? And what about this word "palliative"? I know that in a loose translation it means pain management and improving quality of life, but every hair on my head stands up when I hear it. It feels like we're just being handed some ointment for the dying. Does it really just mean that? That there's nothing more we can do except manage the pain? If that's the case, why bother with chemo at all? What has been the experience for others?

Radiation targeting secondary bone issues is called palliative radiation. Generally speaking, malignant cells respond quite well to that type of radiation. This should stabilize the situation regarding the bone.
I’m not going to beat around the bush or sugarcoat this. Metastases are definitely a serious complication, and you should prepare for a long haul. As for how things unfold from here—how she responds to treatment or how the disease progresses—it is highly unpredictable and entirely unique to her. That’s why I always recommend living one day at a time; don't try to plan anything further than tomorrow.

Are there any support groups in Washington, D.C., where families of those who’ve passed away can get together?
It’s been a year since my dad passed—my mom, my sister, and I just don't talk about it at all—and lately, things have been feeling a bit heavier than usual 😢. I really feel the need to just talk to someone... maybe people my own age (I'm 23, by the way) who actually get it, but I'm honestly not sure where to even start looking...

Chloe Gray5 said:Are there any support groups in Washington, D.C., where families of those who have fallen ill or passed away can meet?
It’s been a year since my dad passed. My mom, my sister, and I just don't talk about it at all, but lately, things have been feeling heavier than usual 😢. I really feel the need to talk to someone—maybe people my own age (I'm 23) who would actually get it—but I honestly have no idea where to turn..

The Krijesnica association has support groups specifically for grieving family members.

Thanks 🙂.

My father-in-law is heading in for a chest X-ray today, followed by a CT scan of his abdomen and thorax the day after tomorrow... please keep your fingers crossed that the results come back clean.
I assume the X-ray report will be ready almost immediately, but does anyone happen to know what the typical wait time is for CT results?
He’s also supposed to have some tumor markers drawn, but he mentioned they’ll handle that in Washington, D.C., during the actual consultation. It seems a bit counterintuitive to me—wouldn't those lab results need to be ready for the appointment too?

Amanda Miller69 said:My father-in-law is heading in for a lung X-ray, and then the day after tomorrow he’s doing a CT scan of his abdomen and chest... fingers crossed everything comes back clean.
I assume the X-ray results will be ready immediately, but does anyone know how long the wait usually is for CT results?
He’s also supposed to get blood markers drawn, but he says they'll just do that during the appointment in Washington, D.C.... seems a bit illogical if those results are needed for the actual exam, right?

Well, you're probably looking at a week to ten days. But since the holidays are hitting right now, don't be surprised if it doesn't show up until after New Year's.