Posts by Angela Wright

Kevin Bishop10 said:I just fired off two emails. One went straight to the professor in Barcelona at the address I currently have on file, and the second was sent to the "All for Her" association, asking if they might have an alternative email address for him.

My only real "logistics" issue is my wife, who has a massive phobia of being outdoors. We basically can't go anywhere together; if I’m stuck in the hospital, she stays hunkered down at home, only stepping out to the corner store about 20 yards away.

I’m going to start reaching out to the hospitals running clinical trials. I want to see if I can find a way through...

I’ve got a massive day at the hospital tomorrow—ECHO, mammogram, the whole nine yards. Once I get those results back, I’m heading straight to the oncologist. I’m planning to push for a real, deep dive into my options, assuming they actually show up ready to work and aren't just sleepwalking through my appointment.

Thank you from the bottom of my heart!

Don't bother thanking me. I truly believe we owe each other this kind of information—it’s just the decent, human thing to do. Besides, it matters to me personally. Sharing this gives a little more purpose to the lives of the people I've learned these things from.
Look, I've been dealing with this mess for a long time now, and if there's one thing I've realized, it's that there is always a new path forward. Even when you feel like you’ve hit a brick wall and everything seems completely tapped out, there is still an option on the table. The only real hurdles are whether you can actually find the right information, whether you have the mental grit to keep pushing, and just the general state of things around you. There are always options to try—even if they aren't about extending life, they are about making the attempt.
I believe in you!
God helps those who help themselves!

I think you might be a candidate for Xeloda. You need to have a straight talk with your oncologist—don't hold anything back, tell them exactly how you're feeling, and specifically ask about Xeloda. At the same time, start hunting for Baselg right away and make sure you sign up for any clinical trials. Currently, they’re accepting patients in Germany and Spain.
I really hope you have some solid logistical support around you.

Look, try reaching out to our association, "All for Her." They almost certainly have a direct line to someone dealing with Baselgin. It’s very likely they’ve already been contacted by other men facing breast cancer issues.
Just Google them; their website and contact info should pop up immediately.

Here’s a study regarding male breast cancer:
http://www.nhs.uk/Conditions/Cancer-...cal-trial.aspx

Honestly, you aren't going to find much more help in America regarding your situation. You're looking at high-level options like Baselg, proton therapy, or clinical trials.
Personally, I’d go out of my way to get a second opinion from a top-tier institution to figure out the next steps. If those steps involve clinical trials, then that's where you go. In my view, that’s actually the best move because those treatments aren't out of your pocket; if the drug works for you, the pharma company running the trial will provide it pro bono for as long as you need it—even for life, regardless of when the study officially ends.

Kevin Bishop10, I finally tracked down a contact on the forum.

Also, here’s some info on a Baselgin contact, though I’m not sure if it’s actually worth anything.
https://uabcei.pure.elsevier.com/en/...twork-persons/
If this isn't the right lead, just keep digging until you find him. Honestly, given your diagnosis and everything you've been through, I think you could be a really compelling case study from a clinical perspective.

Kevin Bishop10 said:Thanks for the reply.

I have a mammogram scheduled for Monday too.

From what I managed to skim between the lines of the consultation report, they seem dead set on jumping straight to some "heavy-duty" chemotherapy, regardless of how I'm actually holding up. The only thing they asked for was an echocardiogram, probably just to gauge how much of a dose my heart can take. Nobody even mentioned a biopsy—do they really think the pathology from the skin metastasis sample is enough?!

To be honest, cisplatin absolutely wrecked me; carboplatin was a bit easier to handle. It’s not that I’m scared of "strong" chemo, it’s pure panic. If they decide to go with AC or something similar, I think I might just walk away. I simply don't feel capable of surviving that. Xeloda is supposed to be one of the easier treatments, but whether it’ll actually work at this stage is something I’ll have to ask the oncologist...

Based on what I’ve seen with women dealing with breast cancer, they usually receive treatment during the transition between newer lines of therapy.
Look into proton beam therapy abroad. A late friend of mine was able to access it even in a very advanced stage, and it worked wonders for her lung metastases. Unfortunately, because of the prolonged treatment, her heart eventually gave out, which is ultimately what killed her. She was in that waiting phase when she hit a wall here in America, receiving Xeloda.
I remember she went to Munich for proton radiation. I'll dig up her email and post those contact details she gave me back then.
She also saw Dr. Baselg in Barcelona. Word is, he’s a world-class authority on breast cancer.

If I were you, I would definitely seek a second opinion. You’re dealing with a rare diagnosis for a man, so you really need to see how these cases are handled in places where there's more experience with this specific situation.

First things first, we need to focus on recovery and immediately determine if starting Xeloda therapy is an option while we hammer out a new battle plan. From what I understand, people react to it differently, but for most, you can push through that initial period of exhaustion and weakness to get it working—and more importantly, it helps slow down the progression of the disease.

Kevin Bishop10 said:Had a breast ultrasound yesterday: BI-RADS: 5 on both sides, left and right!

What are the next steps, considering how I’m feeling (exhaustion, nausea, general physical weakness...)?

The priority now is getting a biopsy done ASAP followed by surgical removal.
Honestly, where has this guy been all this time?!
I believe the treatment protocol is essentially the same as it is for women.

And a quick reminder to the admins: I suggested a while back that we should keep breast health discussions on a dedicated universal thread rather than burying them under "women's health."
Breast cancer incidence in women is high, so info is easy to find, but with men, we deal with situations like this where a person spends years just wandering around lost without answers.

Rebecca Carter9 said:Hi everyone, I just got my pathology results back and they confirmed I have a liposarcoma. As a precaution, I'm starting a course of 6 rounds of chemo. The cycle is 5 days at the hospital followed by 3 weeks at home. Does anyone here have experience with this? Thanks.

Generally speaking, sarcomas are pretty stubborn when it comes to chemo and radiation. The gold standard is surgical removal—getting it all out—whenever that’s an option. This chemo regimen is likely intended to mop up any stray cells left behind.
You'll need to stay on top of regular follow-ups after this is done. Whether or not it comes back depends on the individual, but you definitely can't ignore the risk of recurrence.

neoncyclist792 said:Has anyone here dealt with treatment at Avianca? I'm wondering how the whole process works—do you just send over your test results and they decide what to order, or can someone with enough cash just fly down there for testing and treatment right away? Sorry if that sounded a bit clunky, I hope you guys get what I'm asking.

Just Google the topic. One lady on this forum already posted about her mother's ovarian cancer treatment.

analogcanyon4 said:Thanks for the reply, Angela Wright, I totally agree. When I was sick, all I could do was daydream about everything I’d do once I got better. Now that I’m actually cured, instead of enjoying a higher quality, peaceful life, I find myself stressing over things that don't even matter. I haven't done a single thing I planned.
And I was given a second chance that so many people unfortunately never get.
I realize how lucky I am... it's just that I can't seem to flip the switch... my mind is playing tricks on me.😵😵

Go take a stroll through the oncology ward where the folks with metastases are, or hang out in the outpatient clinic and just talk to people. It’s like a reality check. For me, it works perfectly—whenever I start whining about some trivial nonsense, I see what others are actually battling, and suddenly, I’m back to loving my life.

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.

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.

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.

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.

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

Chloe Garcia10 said:Hey there!

I didn't feel like I was suffocating last night—or rather, I just couldn't feel anything at all.
But that constant lump in my throat? It’s definitely still there.
And honestly, I have no clue why my arm is hurting, too.

It’s because referred pain from acid reflux can radiate just like that.
Do a quick Google search on GERD; it’ll make much more sense to you.
Get a referral for a gastroenterologist since reflux seems to be the culprit here.

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.

Chloe Garcia10 said:Dan!

I get this weird tightness in my left arm every once in a while—it’s almost always in the exact same spot on my upper arm. It also makes me feel like I'm being choked, and sometimes my grip in my hand just feels weak. I'm right-handed.

Of course, my brain immediately goes into full panic mode thinking it's a heart issue, but all my medical tests have come back totally fine.

The thing is, my neck and shoulder muscles are incredibly tense right now—they're rock hard and super knotty...

Could that be what's causing it?

lp

It sounds more like GERD or maybe just standard acid reflux.
Let me take a guess at what you're feeling:
Does it happen mostly at night, making you feel like you can't breathe and triggering that panic, almost like there's a lump stuck in your throat that won't go down, while the pain radiates from your sternum straight into your arm?
There are threads on this forum about it and plenty of info online, so just do a quick search. It's a pretty textbook symptom.

neoncyclist792 said:What would you recommend for boosting the immune system? My brother-in-law is about to start radiation, and they mentioned chemotherapy too, though we don't know the specifics yet. With this massive sea of supplements and products out there, what should we pick? Price isn't an issue.

Don't overdo it—stick to no more than three supplements, and make sure they actually complement one another.

Personally, I’d go with beta-glucan (like Imunobuster, which is incredibly potent), native propolis (great for fighting off infections, plus studies by Rudjer have shown it can even help repair damaged DNA), and high-quality probiotics (essential for maintaining immunity and restoring the gut flora needed for healthy digestion).

He should avoid taking them on the actual days of therapy; instead, take them during the gaps between cycles to help boost his immunity and aid recovery.

Of course, try to eat fresh, home-grown fruits and vegetables whenever possible—ideally organic. Focus heavily on berries and anything orange, like apricots, pumpkin, or carrots. Minimize refined foods and sugar as much as possible. You don't necessarily have to cut it out entirely, but having ice cream or a heavily sweetened coffee every single day does more harm than good.
If he can't manage to eat fish at least twice a week, he absolutely needs to take Omega-3 capsules.

Only buy supplements from reputable pharmacies or certified, trusted manufacturers. Honestly, the best approach is to lay out the options, trust his gut, and make a decision. Once he settles on a regimen, he needs to stick to it consistently as long as it feels right. Don't bounce around from one thing to another every few days.

Betty Wood71 said:Thanks for getting back to me so fast,
Dr. Vrdoljak probably approved the Erbitux now; he should be going in for a checkup tomorrow to find out more.
The K-Ras test was done, and they said it wasn't a match.
We know his legs are swollen because of his liver, but it's a good sign that there's no ascites yet.
Right now, his biggest issue is this cough that's choking him, even though his lungs looked clear on the last CT scan about 20 days ago.
We are honestly losing our minds trying to find some new way forward—we're desperate. We even tracked down a woman from Split who was saved by Dr. Simoncini (she had breast cancer that spread to her liver, brain, lungs, and bones), though I know you don't agree with that approach.
Anyway, she used to come see my dad for exams, and right now we're testing her IV therapy because we felt like we had no other options. Dr. Jadrijevic said surgery isn't an option, and he couldn't do chemo due to his lab results.
But at least it gave Dad some hope to keep fighting.

Then unfortunately, he isn't a candidate for Erbitux, and you'll have to move on to something else. That cough is likely happening because fluid is starting to build up in the pleura.
As for Simoncini, I’ve already said my piece, but I have to tell you: you've swallowed some stories whole from someone regarding things that neither you nor she likely understands. How can you claim to have an accurate insight into her condition, and how can you be sure she hadn't already undergone other conventional treatments?
How do you know that the cough Dad is having right now isn't a complication from voluntarily injecting something you don't actually understand—something where nobody is taking any responsibility for the outcome? How do you know it isn't sabotaging the effectiveness of the treatment Dr. Vrdoljak is providing, or worse, acting as a contraindication?
You've stepped into a very gray area without actually knowing anything about the enemy you've decided to pick a fight with using something undefined, just because someone told you it worked for them. You've dove into this out of a pure need to negate that feeling of helplessness and despair, which is completely understandable, but incredibly dangerous. The road to hell is paved with good intentions. Dealing with the conscience later on is a heavy burden. Believe me, I am struggling with it deeply today.
If you need hope, you can find it much more safely through proven complementary supplements that actually have legitimate, documented effects.