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

@rowdyjackal56/">@@rowdyjackal56 - Sure thing, thanks!

Lawrence Ortiz6 said:@rowdyjackal56/">@@rowdyjackal56 - Sure thing, thanks.

Could you please just shoot me an email? It’s much easier for me to manage that way.

I was just reading up on Simoncini. Honestly, I’m already familiar with his work—I actually went as far as buying some baking soda, though I eventually talked myself out of trying that too, as if I hadn't already lost my grip on reality entirely. It is incredibly difficult, isn't it? Trying to navigate this sea of information, deciding on dosages, and wondering who on earth we can actually trust. Naturally, we find ourselves questioning everything, digging for answers, and consulting a whole parade of doctors about every single thing we put into our bodies. In the end, we're left in this limbo where we don't truly know what the outcome will be, so we end up mixing alternative therapies with the painfully slow pace of conventional medicine. That is, unfortunately, the messy, complicated reality of fighting cancer. But there is absolutely no giving up; we are staying as positive as humanly possible, and since we've seen some encouraging progress so far, we’ll just have to take it one step at a time and see where it leads.

We’ve been using cannabis oil ourselves, and while I can't say for sure how much of an impact it's actually having, it does seem to calm my dad down and help him sleep better, plus I've heard from a few people that it helps with appetite and boosting the immune system.

rowdyjackal56 said:Please just email me, it’s much easier that way.

I just finished reading up on Simoncini. Yeah, I know all about it, and honestly, I even bought some baking soda before ultimately backing off from that too because I was losing my mind. It’s incredibly hard to decide what the right move is, how to dose everything, or even who you can actually trust. Of course we doubt things, we ask questions, and we consult a dozen different doctors about every single thing we try. In the end, we have no idea what the outcome will be, so we find ourselves mixing alternative methods with the painfully slow pace of conventional medicine. That’s just the reality of fighting cancer. But there is absolutely no giving up; we are staying as positive as possible, and since we've seen some actual progress so far, we’ll just take it one step at a time.

We were thinking about doing this last summer too, but we hesitated and looked for other options, yet now we’ve been backed into a corner and feel like we have no choice but to give this a shot.
The doctors told us Dad had maybe a year or two left, and he spent this past year fighting hard and feeling great, which actually showed real results—his metastasis count dropped by about 30%—but then after about 15 or 16 rounds of chemo, everything just started spiraling downhill.
So, we decided to go this route once he couldn't handle any more chemo; Simoncini said the situation is tough because these clusters have formed that are really hard to break down, but we’re going to try anyway.

Betty Wood71 said:We were actually thinking about doing this last summer, but we hesitated and eventually backed out; we kept searching for other avenues, but now we’ve been backed into a corner where there really isn't any other choice but to give this a shot.
The doctors told us that given my dad's condition, he might have up to two years, but then he spent a year fighting through it and feeling surprisingly great—there was even progress, with his metastasis count dropping by about 30%—but then, after about 15 or 16 rounds of chemo, everything just started spiraling downhill.
So, we finally decided to go this route once he reached the point where he couldn't handle any more chemo; Simoncini mentioned that things are difficult because these clusters have formed that are tough to break up, but we're going to try anyway.

I hear you loud and clear.
As for us, they haven't really thrown specific prognoses our way yet; instead, it's always just, "Oh, you all are being so incredibly positive!" And honestly, I see exactly what they're implying through that. We aren't interested in their speculative timelines; we want actual solutions. And so far, after four months, all we've managed to get done is that one radiation session. I have no idea if that's considered fast or slow within the American healthcare system, but from where I'm sitting, it just looks like we have to manage everything ourselves. They're bouncing us around like a ball in a game of ping pong.

Kevin Bishop10 said:Hey everyone!

I’m checking back in after being gone for three years. I'm 58 years old and living in Sarajevo.

Quick refresher: My cancer was discovered 3.5 years ago, back when VedranST was still active here with us. Five different histopathology analyses of my lymph nodes and skin all came back with the same result: "adenocarcinoma of unknown epithelial origin." Based on those findings, I went through chemo regimens of cisplatin+irinotecan and carboplatin+taxol, but nothing worked. I’ve endured about ten CT scans, MRIs, three PET/CTs, scintigraphy, countless ultrasounds, and endless blood work. I even went as far as testing for HIV just to be sure—thank God, it was negative. Every single scan and report shows that no internal organ, from my head down to my pelvis, is affected by the disease.

The latest results indicate the cancer is still present via metastases in the lymph nodes of my left groin, small pelvis, and left side of my neck, as well as in my bones (spine, ribs, skull) and on the skin of my hands, neck, and head.

To deal with the pain, I had five rounds of radiation on my spine, which did help dull the ache.

Tomorrow, I have a procedure scheduled to remove another "spot" on my skin, hoping that this HP analysis will finally give us an answer regarding the true origin of this cancer.

Since waiting for these results takes over a month here, and they’ll probably just come back as the same thing again (adenocarcinoma of unknown origin), I’m asking for help: Is there a high-quality, reliable, and trustworthy lab in the US where I could send my samples? I want to ship them to someone in a major metro area who can get it done right. My oncologists have to stick to the HP findings because no other diagnostic tool has given us anything useful; the treatment plan depends entirely on that pathology report.

Thanks for any input. Greetings from Sarajevo!

I would try the pathology department at the hospital near the Salad area or maybe the Mayo Clinic.
Personally, I’d focus heavily on the skin, because something about your description makes me think of melanoma or perhaps an even more likely skin cancer. You really need a thorough examination by a top-tier dermatologist. It reminds me of a case involving a woman who had a persistent lump on her breast that wouldn't go away. Her doctor actually poked and squeezed it. A year later, they found metastases in her axilla and several other places, but they still couldn't figure out the primary source. In the end, it turned out to be skin cancer that had manifested as that very lump they were squeezing, which then spread into the surrounding tissue and sent out metastases.
I don't remember what happened to her after that, but that's basically how the story goes.

Angela Wright said:I would try the pathology department at the local clinic or the Mayo Clinic.
Personally, I would focus on the skin, as I feel something is pulling at you regarding melanoma or perhaps even more likely, skin cancer. You really need a thorough examination by a competent dermatologist. I recall a case involving a woman who had a small bump on her breast that wouldn't go away and was bothering her; her doctor actually pierced and squeezed it. A year later, they found metastases in her axilla and several other locations, with no idea where the primary source was. It turned out to be skin cancer—that very same bump they had manipulated, which had spread into the surrounding tissue and sent out metastases.
I am not sure what happened to her in the end, but that was the gist of it; I don't remember all the specifics.

Thanks for the help.

They removed the skin lesion this morning and sent it for analysis, which should be ready in 20 to 30 days. Once that is done, I plan to take the material to the Mayo Clinic. I will certainly contact them beforehand to arrange everything.

If we are talking about melanoma, isn't 3.5 years far too long? Based on what I have read online, melanoma develops much more rapidly. Within 3.5 years, it should have "appeared," grown, spread, and perhaps even formed an open wound. On multiple occasions, I have visited "official" dermatologists, and not a single exam lasted longer than 45 seconds, even when they supposedly "checked" my entire body. They told me the skin was fine and that I didn't have skin cancer.

Our private dermatologists seem more interested in Botox, lasers, acne, and things of that nature. There isn't a single one on our local forums that everyone praises. Generally, they are superficial, rude, and uncommunicative. I will go to the Mayo Clinic once more and demand a detailed examination.

Is there any type of skin cancer that develops slowly yet still produces metastases in the lymph nodes, bones, and skin?

Kevin Bishop10 said:Thanks for the help.

They removed the skin lesion this morning and sent it off for testing; results should be back in 20 to 30 days. Once I have them, my plan is to take that material down to a major center, maybe a specialized clinic or the Mayo Clinic. I’ll definitely reach out to them beforehand to set everything up.

If we're talking about melanoma, isn't 3.5 years way too long?! From what I've read online, melanoma moves much faster than that. In 3.5 years, it should have "shown up," grown, spread, and maybe even turned into an open wound. I've seen several "official" dermatologists, and none of their exams lasted more than 45 seconds—even when they supposedly "checked" my entire body. They all just told me my skin was fine and that I didn't have any skin cancer.

Most private dermatologists these days seem more interested in Botox, lasers, acne, and stuff like that. You don't see anyone on local forums getting universal praise. Generally, they're superficial, rude, and impossible to talk to. I’m going back to the Mayo Clinic one more time to demand a thorough examination.

Is there any type of skin cancer that develops slowly but still manages to metastasize to the lymph nodes, bones, and other parts of the skin?

Like I said, it looks more like a standard skin cancer than melanoma, and those types do exist—they most commonly pop up on the head, neck, arms, and legs.
http://www.euromelanoma.org/america/...skin-cancer
http://www.euromelanoma.org/america/...skin-cancer

Angela Wright said:I mentioned that skin cancer can look different from melanoma; certain types often appear on the head, neck, arms, or legs.
http://www.euromelanoma.org/usa/...types-of-skin-cancer
http://www.euromelanoma.org/usa/...types-of-skin-cancer

I've read the articles in those links. Honestly, I wouldn't dare make any definitive claims; nothing is ever quite that obvious. This is clearly work for a seasoned dermatologist. I plan to go in next week to request a more thorough evaluation.

From my own 3.5 years of experience: it is worth fighting. It is worth enduring the various therapies and procedures, because every single new day is an immeasurable gift. The only true metric is quality of life. If each day brings even one piece of good news, a meaningful encounter, or a simple smile, then one should continue seeking out new treatment options.

Kevin Bishop10 said:I read through the info in those links. Honestly, I wouldn’t dare make any definitive calls because nothing here is a slam dunk. This looks like something that needs an experienced senior dermatologist. I'm heading in next week to push for a much more thorough examination.

Based on my own 3.5 years of experience: it is absolutely worth fighting. It's worth enduring the endless cycle of therapies and procedures because every single new day is an immeasurable gift. The only metric that matters is quality of life. If a day brings even one bit of good news, one meaningful connection, or one simple smile, then you have to keep hunting for new treatment options.

Respect! I really hope they uncover something soon. You've got a silver lining here, though—it clearly seems to be something involving low magnetite.
Who knows? Maybe there was something once upon a time that just surfaced, kind of like a lady I remember. The skin is the largest organ in the body. That thought just crossed my mind, which is why I brought it up.

Angela Wright said:Well done! I really hope they uncover something soon. You're lucky that this appears to involve low magnetite levels.
Who knows what you might have had once before, perhaps something that could be squeezed out, similar to a lady I was just thinking about. Skin is the body's largest organ, after all. That possibility just crossed my mind, which is why I mentioned it.

It wasn't easy at first. When I read the word "cancer" on that initial report, I lost my footing. It felt like the ground simply vanished beneath me; I didn't know whether to turn left or right. In moments like that, a person shouldn't be left alone. There should be no waiting, no hesitation regarding finances—you just find the highest quality oncologist immediately to oversee the testing and treatment.

I am hoping to have (just a little more) luck and finally receive a definitive diagnosis. While no chemotherapy is pleasant, it doesn't even compare to bone metastases. I am currently on Zometa and praying to God it works. There isn't a single position in which I can sleep, so I am mostly sleep-deprived and exhausted. Only
faith in God keeps me pushing forward in search of answers...

@Angela Wright, could you give me your take on my grandma's diagnosis? I posted about her moles in another thread, but nobody's replied there yet, and I can't get back to the doctor who made the call until Tuesday.

The diagnosis listed is Tm cutis—as far as I can tell from her medical records, they haven't even done a biopsy yet.

Current status: she's dealing with varicose veins. On her right lower leg, there’s this flat growth about 12mm wide, covered by a moist scale, and there's an erosion underneath it.

Th N2
Th N2 Epitheliale Ah cream 2 x daily

I laid out all the gritty details in that other post.

After finishing 7 rounds of chemo under the Folfox protocol, my dad's treatment was switched over to Folfiri plus Avastin. He was originally supposed to get 12 rounds of Folfox, but now he’ll be doing 6 rounds of Folfiri instead. Actually, just 5, since he already had his first dose of the Folfiri.
My guess is this is pretty bad news, right?
Dad says he isn't sure about his markers, but his blood work looks fine and he’s feeling okay.

Is this Folfiri plus Avastin combo strictly palliative, or is it actually used for people who still have a shot at being cured?

Dana Martin87 said:My dad just had his treatment switched from the Folfox protocol to Folfiri + Avastin after finishing 7 rounds of chemo. He was originally supposed to hit 12 rounds of Folfox, but now he’ll only be doing 6 rounds of Folfiri—actually, only 5, since he already had the first one.
I'm assuming this is really bad news?
Dad says he doesn't know what his markers look like yet, but his blood work is fine and he's feeling okay.

Is this Folfiri + Avastin combo purely palliative, or is it used for people who actually have a shot at being cured?

Avastin is a smart drug used for metastatic colorectal cancers, and it has even shown some effectiveness in other diagnoses like glioblastoma.
I don't think this is strictly "palliative" in the way you might be thinking; rather, oncologists have found that, for whatever reason, this is currently the better option for him.
As far as a total cure goes, you have to face the reality that metastatic diseases are incredibly difficult to fully eradicate. The primary goal here is regression and/or putting the disease into remission while maintaining the best possible quality of life for as long as possible. Some people go on to live for decades if they respond well to the therapy.

Angela Wright said:Avastin is actually a smart drug used for metastatic colorectal cancers, and it’s even shown some effectiveness in other diagnoses like glioblastoma.
I don't think this is just about palliative care; for some reason, oncologists have found this to be the better option right now.
As for a total cure, you have to face the reality that metastatic diseases are incredibly difficult to beat. The main focus is usually on regression and/or putting the disease into remission while maintaining the best possible quality of life for as long as possible. Some people even manage decades if they respond well to the therapy.

Thanks for such a quick reply. 🙂

I was up until 5:00 AM reading Vedran Sabadi's story, and honestly, it just left me feeling depressed. Someone with that much strength and optimism passing away in such intense pain is heavy. Besides him being younger than my dad, their stories feel so similar. Late-stage colon cancer diagnosis, switching up chemo regimens, that incredible optimism and belief in a recovery... and then seeing how it ended just hits hard. It looks like there wasn't even enough pain management to give him any relief.

Dana Martin87 said:Thanks for such a quick reply. 🙂

I was up until five this morning reading Vedran Sabadi’s story, and honestly, it just left me feeling completely depressed. It’s heavy seeing someone with that much strength and optimism pass away in such intense pain. On top of the fact that he was younger than my own father, their stories hit way too close to home. Late-stage colon cancer diagnosis, constant switching up the chemo protocols, that relentless optimism and belief in a cure... and then that ending just crushes you. Looking back, it feels like there wasn't even a decent painkiller available to give him any relief.

I followed Vedran’s journey from the very beginning, practically right through to the end of his fight.
Speaking as an outside observer, I can tell you that everyone fights their own unique battle—if you catch my drift.
He told me about a group of people who had lower-grade malignancies but targets in all the wrong places. They passed away before he did.
Everyone tells their own version of the story, including how they handle their diagnosis. To be honest, having gotten to know him a bit more personally and shared some thoughts, it seems to me that certain life struggles weighed on him even more heavily than the metastases did in the end. He left a little bitter, but he was a fundamentally different and mentally tougher person than the guy I first met.

Hi everyone, my dad was recently diagnosed with lung adenocarcinoma, which is pretty heavy news. He’s 59, but he’s incredibly active—always out in the woods splitting wood and keeping himself moving, so he’s physically quite strong. Right now, the doctors suspect it might have metastasized to his liver, though we’re still waiting on an MRI to confirm everything. After the surgery, the plan is to go through four cycles of chemotherapy using cisplatin and paclitaxel. I’m wondering if anyone here has gone through something similar? I’d really appreciate it if you could share your experiences—anything about the chemo process itself, what kind of side effects to watch out for, or even advice on nutrition. Like, what foods are actually easy to keep down when you're feeling rough? And how long does the whole thing usually take? Thanks in advance to everyone.

Angela Wright said:I’ve been following Vedran from the very start, practically through the entire fight.
Looking at this from an outsider's perspective, I guess you could say everyone fights their own battle in their own way.
He told me about some guys who had less aggressive cancer, but because the metastases were in the wrong spot, they passed away before he did.
Everyone tells their own story, including how they deal with a diagnosis. Honestly, getting to know him a bit better and sharing thoughts, it feels like other life struggles hit him harder than the metastases eventually did. He left feeling a bit bitter, but he was a completely different, mentally tougher person than the guy I first met.

I kept hoping that even though the cancer was caught late, there wouldn't be any metastasis, since I didn't see anything suggesting that in his medical records. Though, admittedly, the last time I looked at his files was at the beginning of the first month.
This Avastin news really hit me hard. For a second, I almost wished Dad wasn't so certain about getting better. To him, changing therapy just means: "Okay, it won't be quick or easy like I thought, it'll take more time, but I'm still going to recover."
I don't know which is worse—living without hope, or living on false hope...
He has this crazy strength in him. He takes the bus to every chemo session alone, and takes the bus back alone. There are tons of germs on those buses, yet he never even catches a cold. Unfortunately, he doesn't have any other choice but the bus.
When I visited him during that first month, a few days after chemo, he spent the whole time walking around town with my little one, playing with her, taking her to arcades...
And yet, despite all that willpower and strength, there's no hope for a cure.
From what I can see, people on his specific therapy and with his diagnosis have a maximum 8% chance of surviving five years.
If we were talking about decades, then I’d call that a recovery.

I checked out the cervical cancer thread, but it’s pretty much a ghost town, so I figured I’d jump over here instead. Just to be clear, I’m not posting as a caregiver—I’m the patient. Ten months ago, I was hit with an adenocarcinoma diagnosis. Honestly, I won't bore you with the whole "shock and terror" routine; it sounds weird, but at first, it all felt so surreal and distant. After my cone biopsy showed positive margins (stage 1b1, grade 1), I had to go through a radical hysterectomy. I don't know how else to put it, but once the initial shock wore off during my hospital stay, I was dead certain everything would turn out fine. Like, I truly believed this was just the starting line and that I’d caught it right on time. I remember my husband just staring at me, completely floored by how calm I was being. You know that feeling where you’re just *convinced* things are going to work out? I was actually more upbeat than some of the other women on the ward who had much less serious diagnoses; I was the one trying to cheer them up and keep the vibes positive. The surgery took about three and a half hours, and shortly after I landed in ICU, the surgeon came by to tell me he was really happy with how it went and thought I’d be okay. And this guy isn't exactly known for handing out easy optimism... Everything was removed, including 50 lymph nodes. About fifteen days later, the results came back: adenocarcinoma in situ, and all 50 nodes were totally clear. No radiation, no chemo. Even then, my confidence didn't waver... I just knew I was going to be alright. But now, ten months later, the fear is hitting me harder than ever. It’s like I’m finally waking up to how heavy and dangerous this whole thing actually was. I can't stop obsessing over it—scouring the web, reading every study, digging for answers. My husband says I'm looking for trouble... Every little twinge, every tiny ache, every random sharp pain... it sends me straight into a panic. It’s actually scarier than that moment the doctor looked me in the eye and said, "You have cancer." Is this just a delayed reaction? Is anyone else going through this? Probably everyone, right? But I just can't shake the constant dread that it’s all going to come back.

analogcanyon4 said:I tried posting this in the cervical cancer thread, but it seemed pretty dead, so I figured I'd drop it here instead. I’m not writing this as a caregiver; I was the patient. Ten months ago, I was diagnosed with cervical adenocarcinoma. I won't dwell on the initial shock or the terror—it sounds strange, maybe, but at the start, all of that felt incredibly distant. After a cone biopsy showed positive margins (stage 1b1, grade 1), I had to undergo a radical hysterectomy. It's hard to put into words, but after that first wave of shock, I spent my entire hospital stay feeling absolutely certain that everything would be fine—that this was just the beginning and that I’d caught it early enough. I remember my husband watching me, completely stunned by how I was handling it. You know that feeling? That unshakable conviction that you're going to be okay? Honestly, I was in better spirits than some of the other women on the ward who were dealing with much less serious diagnoses; I was the one comforting them and trying to keep the mood up. The surgery lasted about three and a half hours. Shortly after, the surgeon came into the ICU and told me he was pleased with how the procedure went and thought things looked good. He’s actually well-known for being pretty tight-lipped about prognoses... Everything was removed, including 50 lymph nodes. When the results finally came back fifteen days later, it was adenocarcinoma in situ, and all 50 nodes were clear. No radiation, no chemo. Even then, my resolve didn't waver... it was like I just knew. But now, ten months later, the fear is growing. It’s like I’m only just now realizing the gravity of what happened. I can't stop obsessing over it—searching, browsing, reading... my husband would say I'm looking for ghosts. Every little ache, every tiny twinge... it triggers immediate panic, far greater than the moment the doctor looked me in the eye and said, "You have cancer." Is this a delayed reaction? Is anyone else going through this? Probably everyone. I just can't stop thinking about the possibility of it coming back.

Focusing on self-care and shaking up your routine helps. People say that cancer acts like a biological scream, a signal from your body that something in your lifestyle isn't working.
The second you make some real decisions for yourself—actually doing something concrete to work on yourself and shifting your focus from the disease toward prevention—things start to click in your head. There are zero guarantees in this life. We live in this artificial, manufactured bubble of perceived security because it feels comfortable. The breakthrough happens when you realize that living like that is great, but it's also fundamentally delusional, and that acknowledging that reality is perfectly okay.
And let's be real: every single one of us is potentially vulnerable to a malignant diagnosis.
It’s going to be okay, mainly because unlike those who haven't heard the words "you have cancer" yet, you’ve already faced them. Now, you just have to learn how to live with that knowledge. If anything, you're actually positioned for a higher quality, more meaningful, and more peaceful life.😉

As for the cancer—if it ever does come back—you deal with that bridge when you get to it. You can't treat something that doesn't exist yet.