steelbadger83 said:Brenda Richardson33, hang in there. This too shall pass. The start of this year was incredibly brutal for me. First I lost my dearest one, then Zoe, then a close friend—all taken by these wicked diseases. I found myself fighting through chemotherapy, dealing with the Social Security Administration, and trying to manage the cost of expensive medications. Everything felt utterly bleak, but I refused to let it break me. It’s only been four months, yet here I am, living life at a hundred miles an hour. I’m overflowing with optimism, energy, and a renewed faith in the future and in life itself. Cancer actually refined me. It changed me. It gave me the chance to view existence from a completely different perspective and realize that even when things are ugly, they possess a certain beauty. Life is magnificent, and at the end of the day, we are each solely responsible for our own lives, choosing our own paths and how we choose to walk them.
My wish for all of you is that, above all, you accept the illness of your loved ones. Treat them as if they were healthy, and be their pillar of strength while they navigate their own journey of self-discovery. Cancer can be an intense catalyst for reaching the core of one's being much faster than usual (I might even go so far as to say easier). Some succeed on this path, some don't—there are no guarantees—but anyone who falls ill has been given a unique opportunity by God to grow spiritually, and those closest to them can play a vital role in supporting that growth.
Steven Anderson13 said:To be honest, has anyone else dealt with blood showing up in their throat phlegm? My throat has been killing me for about a week now, making it almost impossible to swallow, though I haven't had any other symptoms. I went to see my doctor, and he told me it was just a viral thing, so he suggested I try gargling with some salt water. But then, about three days later, I started seeing blood in my mucus, and it’s been bothering me for four or five days straight without letting up. On the bright side, the actual soreness in my throat seems to be getting better... Is there any chance I might have just irritated my throat too much with the salt water rinses? I did a little bit of digging online, and I stumbled upon some stuff saying this could be a sign of throat cancer. I've been smoking for quite a long time, so I'm feeling pretty spooked right now...
If I were in your shoes, I’d head straight back to the doctor.
Angela Wright said:Just wanted to check in and let you all know where things stand with me right now. Honestly? It’s pretty grim. Mom is getting weaker by the day, and Dad is becoming increasingly hostile toward me. He’s essentially lost any grasp on reality or logic at this point...
...In truth, he’s actually lifted a massive weight off my shoulders, even if he hasn't realized it 🙏. For the last few days, every single one of Mom's setbacks—every pressure sore, every urinary tract infection, every swollen and infected eye, every bout of hemorrhaging, and everything else she struggles with—I don't even mention them to anyone. I just handle it. And somehow, that weight falls on his conscience. Mine remains entirely untarnished. I have done everything humanly possible for both Mom and him; I was fully prepared to see this through to her final breath and sacrifice my own precious time to do so. He, however, has spat on that entire concept. He has stripped her of the highest quality care available in this world, claiming it as his right just so we can spend these final hours together. But I suppose that’s just the price you pay when you deal with sacrifice and unconditional love...
If you ever feel like you're having a bad run, just remember there’s always someone out there dealing with something far worse. That’s the only thought providing me any solace or tempering my frustration and misery right now.🙂
I am endlessly sorry you're being forced to endure this... you hit the nail on the head yourself: "your soul is clean and untarnished." I truly believe how difficult this must be for you... I've actually started working on that website the Sarcoma patient suggested—it's helping me find a sense of purpose and a shred of strength during these final days when I often feel completely depleted. I'll send you a link via PM so you can get an idea of the concept. There's still a lot of writing to do, so please don't be alarmed by any empty spaces on the site. I haven't linked all the articles yet. Regardless, it should be finished in about a month, and there will be a forum too. Working on this project gives me a sense of fulfillment. I'm not quite sure what else to say to you, but hang in there, take care of yourself... sending you my warmest regards and a hand of support! 😘
Angela Davis7 said:Hi there! I read this board regularly, and I have to say, you all have been such a huge support to me. I’ve been battling ovarian cancer for ten months now, so thank you, 😘.
I have a question, though. I’ve been on medical leave for the last ten months, receiving $267 from insurance every month (it feels so shameful!), and now I have to go to a medical evaluation for disability benefits next week. There was some mention of applying for long-term disability/social security. Does anyone know how that works? Is there actually any chance I could qualify for disability at my age? I'm only 25. Thanks in advance, 😘
Look, even my husband (who is 33) had to go through the disability review process. Honestly, it’s mostly just one of those bureaucratic hoops you have to jump through where they basically just issue a document stating that your medical leave is being extended. Down the road—and I mean years down the line—if you truly can't work or if you meet their specific criteria for being unable to perform your job, then you might be able to transition onto actual disability payments based on those records. For now, you just have to show up, but don't go counting on a disability check quite yet.
electricskipper8 said:I ended up undergoing surgery at an orthopedic clinic because they initially assumed it was just a cyst.
Check your PMs.
Just one quick heads-up regarding sarcomas: in the US, there are really only three doctors who actually know what they're doing when it comes to sarcomas. Two of them are over at Mayo Clinic, and the third is at the Cancer Institute.
If you're looking for a recommendation, I'd go with Mayo Clinic.
I don't have the details for other cities yet, but I'll look into it and find out.
When you're looking at a Sarcoma biopsy, it is incredibly easy to misinterpret the results. That's why performing a molecular genetic analysis is absolutely vital—you need definitive proof that a chromosomal translocation actually occurred. Here is the link to the table detailing the clinical and pathological characteristics of SS-type.
I honestly find it hard to believe they neglected to do that. 😲
electricskipper8 said:The issue is that nobody actually sat me down and explained what this really is. At the clinic where I had my surgery, they just told me the results were bad, that it was a malignant tumor, and then they sent me straight to an oncologist who might need to radiate that area. My oncologist basically told me to go home, get these specific tests done, and then come back to see him once I have the results in hand. I don't even know what a "PHD test" is; the only paperwork I have is the macroscopic and microscopic descriptions, and at the very end of those reports, it says:
"The described lesion, which was entirely removed, most closely aligns histologically, immunologically, and immunohistochemically with a synovial sarcoma. To definitively confirm the diagnosis, a molecular analysis must be performed to identify the translocation specific to this tumor."
Should I be looking for additional testing on my own? Who should I even reach out to? Everything feels like it's moving at a snail's pace.
You ABSOLUTELY need to demand those additional tests. I find it hard to believe they haven't ordered them already!
My husband is fighting synovial sarcoma right now, and we are in the thick of it. For him, the only way to truly confirm it is through an RT-PCR analysis to check for the SYT-SSX translocation.
electricskipper8 said:Well, me too! I had surgery at a major orthopedic hospital to remove a growth on my arm (on the forearm). They initially thought it was just some kind of cyst, but once the pathology results came back, they said the mass looked like a synovial sarcoma. They managed to remove the whole thing, though. I saw an oncologist who ordered a full battery of follow-up tests—lungs, liver, thyroid, lymph nodes... all that. I went through with everything privately using color Doppler scans, and everything looks clear so far. Even though the results are fine now, I’m still in a bit of shock and feeling pretty anxious. Can anyone tell me more about this or suggest how I can protect myself so it doesn't happen again?
What does it actually mean when they say "the mass resembled a synovial sarcoma"? 😕
northernfox9 said:A tiny glimmer of hope finally appeared for my dad...🙂 The marker results just came in, and they dropped from 911 all the way down to 0, or something like that... How much weight should I actually put on these markers?
👍
That's great news. Just keep moving forward with courage.
Angela Wright said:My mother was taking Noni extract daily along with 15 propolis capsules a day—that's three doses of five every single day—and her blood work stayed perfectly stable. Not once did her numbers drop. It really makes you think; it seems like these things are incredibly individual when it comes to how they affect the body.😕
mistyranger4 said:slyseal28 — My mother used to make my father fresh, homemade beet juice right after his treatments. They were very careful about it, though; she was explicitly told not to use any metal tools or containers during the preparation process—nothing from stainless steel or anything similar. It actually seemed to work wonders for him, as his blood counts stabilized incredibly fast. Thanks for sharing that link!
Hi everyone, I’m looking for some advice. My husband started radiation therapy on April 16th, and now that he's completed his eighth session, we're seeing the first signs of side effects—his platelet count has dropped to 158, which is right on the edge. Last week they were at 190, and two weeks before he even started, they were at 240.
Beyond taking Noni, propolis, royal jelly, and sticking to a strict diet (all of which we're already doing), does anyone know of any other "magic" remedies that might help him keep those platelet numbers up? 😕
Maybe this is a silly question, so please don't judge me if it is.
Amy Hayes28 said:Did anyone here mention a certain bioenergetics practitioner from (I think) Indianapolis??? I can't seem to track down the thread again, but I'm positive I read about her on this board! If anyone has her number or contact info, could you please send me a PM?🙏 Thanks
Angela Wright said:My mother is doing terribly. She’s mostly just sleeping—we can barely get her awake long enough to even attempt a meal. I honestly feel like the end is very close. There is this strange, unsettling sense of peace surrounding her right now; it's hard to put into words, but I can just feel it.😳
😢 I truly admire your courage. Hang in there—sending you my very best.
I’ve been off the grid for a few days, gathering facts and impressions so I can present the reality of the radiation situation as accurately as possible. We also went in for a check-up with a specialist who dropped some truths on us that were honestly quite shocking. When we asked him if we were allowed to share this information online, he just told us to go right ahead. So, here it is:
1. Regarding linear accelerators—the machines used to treat tumors located deep within the body—there are only two in all of the US serving our area, one at Petrov Hospital and another at the Cancer Institute. While the Petrov Hospital website claims they have two accelerators, in reality, only one is actually operational. Meanwhile, a single hospital in a city like Ljubljana has eight of these linear accelerators! Eight versus two. It’s staggering.
2. Take a major hospital, like one of the big university centers; they might send a monthly bill to Medicare for radiation services totaling $333333. Annually, that amount reaches $4000000. That translates to roughly 1,600,000 Euro. A single high-end linear accelerator costs about 2,500,000 Euro. You don't need to be a math genius to see how quickly that investment pays itself off. Every hospital receives certain funds from the government, and every hospital decides where to allocate those resources based on what they deem necessary. But shouldn't acquiring this kind of equipment be a priority? As citizens paying into the healthcare system, we have a right to quality, accessible treatment, and we have a right to ensure we're getting the absolute most value for our money.
3. Furthermore, the capacity of a machine like that is typically around 50 radiation sessions—meaning 50 patients. Yet, on our current linear accelerator, they are performing about 100 radiation sessions every single day! That's 100 patients being pushed through a single machine.
We have to do something. We need to support the doctors who are truly fighting to help ordinary people like us. Most importantly, we need to help ourselves by staying informed and vigilant about how the money we fund for our healthcare system is actually being spent.
I’m struggling to find the right words to properly describe the specialist we saw. He is a true fighter and a humanitarian at heart, but even he is powerless against the system. This is why we need the help of volunteers. He isn't the only doctor who realizes there is a massive problem here, but doctors cannot change the system without our voices behind them.
Someone might call me intolerant for saying this, but I would honestly love nothing more than to see a moderator shut this thread down once and for all; it’s just endlessly, profoundly stupid.
Brenda Richardson33 said:My dear father has closed his eyes forever... he is gone... For now, this is all I can manage to write because the pain tearing through me is just too overwhelming to put anything else into words... such an intense, indescribable agony...🙂 😢 😳
I am so incredibly sorry; please accept my deepest condolences.
I honestly don't know what to say to you, but I'm sending a massive hug your way... stay strong...
I just wanted to let you know that our radiation treatment plan is finally set. Our professor (😘) managed to get everything scheduled for Monday, April 16th, despite all the doubts we had. Words can’t quite capture how relieved we are. Honestly, I think we picked the right doctor.
That said, I haven't forgotten the reality of the situation—that people actually do wait over a month for radiation, and that doctors are forced to triage patients because of equipment shortages. In my view, they aren't the ones to blame for that. I still maintain that we have to push back against the poor decisions being made by certain bigwigs in the healthcare system. We have every right to demand transparency regarding how the money we deduct from our paychecks is actually being spent.
I'm currently working on that webpage Charles Edwards8 suggested. Over the next few days, I’ll be sending him a few design proposals for the site. What I really need now are some high-quality, reliable articles about malignant diseases (the data sources must be accurate and trustworthy). If you have anything substantial—preferably in a text file—please email it to me.
Amanda Williams64 said:I truly admire the courage and optimism you've shown in your previous posts. However, life took a devastating turn for us three weeks ago. Our mother was diagnosed with a brain tumor—Glioblastoma. We’re still sitting here in total disbelief, trying to wrap our heads around the harsh reality that this is actually happening to our family. Any advice on how to fight this brutal disease would be deeply appreciated.
Take a look at some of the posts from @Angela Wright/">@@Angela Wright
I just caught the news on NPR, and honestly, it’s such a shame.
🙂
The fact that he lost this battle... it really weighs on me. It was hard to find the right words to type out just now. Hang in there, everyone.
Cancer is one of those things that can strike any of us without warning. It’s up to us to drive the change—to push, to be stubborn, and to be brave enough to demand that our medical institutions actually step up and improve the quality of care.
Angela Wright said:So, apparently, there was a working lunch on the 1st. Mesić just issued a statement saying he saw him right before it happened, and things looked grim—I think I even saw tears in his eyes—but they did manage to have a brief word. From what I’ve heard, the news about this supposed passing was first broken by a local NPR affiliate.
I’m struggling to find the right way to say this without sounding insensitive, but I absolutely loathe news like this. I can't stand the speculation, especially when dealing with something so heavy.
Does it really matter which newspaper or which radio station gets the scoop on such tragic news? It should be up to the family to decide when and how they want to share it with the world.