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

Thanks for the reply, Angela Wright. Honestly, I’m with you on everything. When I was battling this, all I could think about was the massive bucket list of things I’d do once I got healthy. Now that I’m actually in the clear, instead of just enjoying a better, more peaceful life, I’m already stressing over the next thing on the horizon. I haven't even touched half the stuff I planned to do.
I really did get a second chance that most people unfortunately never get.
I know how lucky I am... it's just that I can't seem to flip the switch... my brain is playing tricks on me.😵😵

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.

Has anyone here actually gone through treatment at Aria? I'm trying to figure out how the whole process works. Do you send them your test results first so they can decide on a plan and order everything, or if you have the funds, can you just head over there for testing and treatment in person? I know my question might sound a bit clunky, but I hope you guys get what I'm asking.

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.

I figured I’d drop an update here since a few of you have been sliding into my DMs asking how things are going.
Dad hasn't been able to touch chemo for three months now because his labs took a turn for the worse, so we decided to go with Simoncini and baking soda because there just wasn't any other choice left on the table.
He’s already finished three cycles, doing six days on and six days off.
So far, he’s actually doing better and his current condition is improved compared to before; all of his liver markers have basically been cut in half, with GGT dropping from 600 to 300 and LDH falling from 3000 down to 1000.
We’ll be doing a CT scan soon to see where we really stand, and the doctor mentioned that if everything looks the same—meaning no progression—then the therapy is working.
Even though his liver is in pretty rough shape with plenty of metastases and large clusters, Simoncini said there's still some hope because there is at least a little bit of clear space left.
It’s a start, especially since his heart is healthy, there’s no ascites, he can eat, and he can handle using the restroom on his own.
I’ll update you all again soon on how we proceed, and let's hope for the best for everyone else stuck in this same situation.

restlessowl3 said:Oligoastrocytoma, grade 2... Non-surgical, radiation is recommended. Does anyone have any experience with this?

Maybe take a look at some American online forums for people dealing with brain tumors. I think
they suggest taking Frankincense up to 5 grams a day (H15 capsules), which apparently helps stop growth.

Hey everyone—so, I just got my pathology results back and it turns out I have liposarcoma. To stay ahead of things, I'm starting a regimen of six rounds of chemo. The schedule is five days at the clinic followed by three weeks at home. Has anyone here gone through something similar? Thanks.

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.

As I mentioned before, I’ve been fighting metastases in my lymph nodes for 3.5 years now, and for the last six months, they've appeared in my bones and skin as well. The primary adenocarcinoma remains unknown.

Yesterday, I received the pathology report from the skin biopsy. To be precise, the pathologist is 85% certain it’s breast cancer (though I am a male, 58 years old), leaving perhaps a 5% chance it could be urothelial, skin, or salivary gland origin.

However, the medical board today took the breast diagnosis for granted. They told me to get a breast ultrasound including the axilla, along with an echocardiogram. After that, chemotherapy begins. The problem is, you simply can't "feel" this cancer. I’ll wait for the ultrasound, but I doubt they'll find anything. It seems they are basing their entire diagnosis solely on one pathology result.

Naturally, I am terrified. They are proceeding with treatment without even 100% certainty in the diagnosis. The pathologist noted that the results are HR and HER-2 negative.

Given that I underwent five radiation sessions on my pelvis back in April and May to manage pain, I feel completely drained. I have no strength left and tire easily. What are my options? How is chemo for this type of cancer tolerated? What kind of side effects should I expect? There is only one oncology center here in Sarajevo, so I don't have anyone else to turn to for a second opinion. I need to start treatment as soon as possible because my condition is worsening daily, and frankly, I'm scared because I've read how difficult this can be.

Please, I am asking for any advice or shared experiences on how to minimize the risk of side effects, especially since I deal with low blood pressure and my heart isn't performing at its best.

Greetings from Sarajevo...

Yesterday, I had a breast ultrasound: BI-RADS 5 on both sides—left and right.

What kind of options are actually left on the table, considering my current state? (The exhaustion, the nausea, the general physical depletion...)

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.

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.

Thanks for the reply.

I have a mammogram scheduled for Monday as well.

From what I managed to glean from the consultation notes between appointments, they seem set on jumping straight into some "heavy-duty" chemotherapy, regardless of how I'm actually holding up. They did request an echocardiogram, presumably to determine my tolerance levels for the dosage. No one has even mentioned a biopsy; apparently, they believe the pathology report from the skin metastasis sample is sufficient.

To be honest, I had a rough time with Cisplatin, though Carboplatin was slightly more manageable. It’s not that I’m afraid of "strong" chemo—it’s more pure panic. If they decide to push AC or something similar, I think I might just walk away; I simply don't feel capable of surviving it. Xeloda is supposed to be easier to tolerate, but whether it's actually effective at this stage is something I'll have to ask the oncologist...

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.

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.

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.

Angela Wright, just like every other time, you handled this perfectly—professional and highly skilled.

I agree that Sarajevo has pretty much exhausted all its options. I’m putting most of my faith in the doctor from Spain, naturally, and in the clinical trials.

Would it be considered contradictory to take some Xeloda (assuming I manage to recover) while simultaneously trying to arrange something elsewhere?

In any case, I am immensely grateful for all the effort. I couldn't see a way out before, but things are looking a bit better now. I'll check back in once I know something... Thank you, truly.

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.

I have just dispatched two emails: one to the professor in Barcelona at the address I currently have on file, and another to the "All for Her" association requesting an alternative contact address if they happen to have one.

My entire logistical support system consists of my wife, who suffers from a severe phobia of being outdoors. We essentially only leave the house together; if I am stuck in the hospital, she stays home, venturing out only to the local convenience store about twenty yards away.

Next, I intend to reach out to the hospitals conducting clinical trials. I will attempt to make something happen...

Tomorrow is quite busy at the clinic—heart ultrasound, mammogram, and so on. Once the results are in, I’ll head to the oncologist to request a more substantial discussion regarding potential options, provided they aren't being difficult and actually feel like cooperating.

My sincere thanks.

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!