Posts by slyseal28

jadetinker42 said:Hello everyone. Sending my very best wishes to those currently fighting any form of tumor;

I have a question, if anyone here happens to have some experience to share;

A coworker’s daughter (born in 1982) was diagnosed last year with the following cancer:

Osteosarcoma of the right femur
Pathological fracture of the distal part of the right femur.
PHD: High-grade malignant mesenchymal tumor with destructive growth. Differential diagnosis considers osteosarcoma with elements suggestive of malignant fibrous histiocytoma.

Just one quick correction—technically, this isn't a carcinoma (which refers to malignant tumors originating from epithelial cells). This specific type of tumor is called a sarcoma, though like carcinomas, it is absolutely a malignant tumor. Sarcomas are malignant growths that develop in connective tissue, meaning they attack the bones (the most well-known type), muscles, fat, veins, tendons, and so on. Generally speaking, sarcomas are rarer and tend to develop in children and younger people. There are exceptions, of course—as with almost all types of cancer—so they can appear in older adults too.
The real issue with sarcoma is that because they are less common, they are frequently misdiagnosed. There just isn't enough clinical research being done, which means we lack those "smart," targeted drugs available for other cancers. Furthermore, sarcomas (much like certain other forms of cancer) can be incredibly aggressive and prone to drug resistance. Surgery remains the best treatment option. However, sarcomas don't really have specific markers or unique symptoms; because of that, they are often—very often—discovered only after they've grown large enough to make complete removal difficult.

Since my husband battled a soft tissue sarcoma, I’ve become somewhat obsessed with learning everything I can about these types of tumors.

jadetinker42 said:Hello everyone, and my best wishes to all those fighting any kind of cancer;

I have a question, if anyone happens to have some experience to share;

A coworker's daughter (born in 1982) was diagnosed last year with the following cancer:

Osteosarcoma of the right femur, lateral side.
Pathological fracture of the distal part of the right femur.
PHD: High-grade malignant mesenchymal tumor with destructive growth. Differential diagnosis considers osteosarcoma with elements resembling malignant fibrous histiocytoma.

Basically, two months into last year, a tumor was found in her right knee. She first underwent three rounds of chemotherapy (doxorubicin 40+30+30mg, CDDP 120mg), and after that, because the knee was problematic, an endoprosthesis was implanted. Following that, she had another three rounds of chemo to wipe out any potential micro-tumor cells. Everything seemed to be improving until the 12th month, when a PET scan was performed, showing the following:

A whole-body scan was conducted. In the neck and shoulder girdle area, there is a slightly more intense accumulation of FDG due to mildly increased metabolism. In the right inguinal lymph node area, a somewhat more intense FDG accumulation of 7mm is recorded. In the distal part of the right thigh, laterally in the soft tissue projection near the prosthesis, there is a very intense pathological accumulation of FDG, measuring 43x45mm, with a max SUV of 16.8. There is also more intense FDG uptake in the abdominal region.
Other parts of the body appeared normal.
FINDINGS:
The PH findings indicate a recurrence of the tumor process with unclear margins. It is necessary to refer the patient for further chemotherapy under Dr. Šantek at the Mayo Clinic. A follow-up PET SCAN will be required, and if the results remain positive, radical surgery will be considered.

So, that’s the short version. Once a tumor enters the equation, things aren't good—that much is clear to everyone—but what my colleague and I are wondering is how serious this recurrence actually is now. If anyone can offer any advice, it would be greatly appreciated.

Best regards, and stay strong.

Unfortunately, a recurrence is serious... From what I've read, this is an aggressive type, though that doesn't mean it's untreatable. You should reach out to our Association for a New Day, specifically brightgardener8 (you can message him here on the forum, or send an email—you'll find the details under Information/Contact). He dealt with osteosarcoma in his femur and had a knee prosthesis implanted himself. He was treated by Dr. Šantek, just like my husband was. Definitely get in touch...

Linda Peterson37 said:And if anyone needs advice or has questions regarding my father's illness or his treatment, please don't hesitate to ask. It would honestly make me so happy if our shared experiences could help someone else. I finally feel like I truly understand the purpose behind founding the Association for a New Day; being part of this community gives me a sense of strength to support people through their own struggles. Which actually leads me to my next question—how do I officially join the Association?
Greetings to everyone...

You can find a few details about joining under the information section on our site. You can fill out the application online, or if you prefer the old-fashioned way, just download the PDF and mail it in. The annual membership fee is $17, and once that's processed, we'll send over your membership card. If you hang around the forum, you can also keep up with our current projects (and what we have planned for the future). We're actually organizing a meetup for members soon so we can all finally meet in person. We're working hard at full tilt...

Grace Fowler said:Here’s the situation: an acquaintance of ours was diagnosed with lung adenocarcinoma last year. By February, she had exhausted every standard medical avenue available—the cancer had spread to both lungs, the liver, and the spine—leaving her with nothing left but alternative options. Since she’s only in her thirties, everyone rallied around her to research where, when, and how to proceed. That’s how she found Dr. Rohde, who uses galvanotherapy (essentially high-frequency electrical currents applied directly to the tumor mass) on oncology patients. To make a long story short, combining that therapy with intravenous immunotherapy worked wonders; she’s doing well now, the tumors have actually shrunk, and she’s moving forward. I had a similar experience back in May. I had a suspected tumor in my small pelvis that was progressing rapidly, along with metastases in my right lung. The labs were a disaster, and the prognosis was just as grim. I started my fourth cycle of chemo, but there was no response, and to make matters worse, I nearly lost my kidneys due to extreme nephrotoxicity from the drugs. On top of that, radiotherapy wasn't even an option because my abdomen had already reached its maximum radiation limit. I decided I had nothing left to lose, so at the end of October, I headed to Germany for three weeks. For the first time in almost nine years, my blood counts were excellent, and I generally felt quite good. I’m not sure if I’m allowed to disclose the specific clinic or the costs here, but if anyone wants more details, please send me a private message. I will say this: it isn't prohibitively expensive.
pozdav din
how did it go?

Dear Dina,
please write a more detailed post on our forum about that galvanotherapy and immunotherapy.

We’ve been thinking of you. This is wonderful news—truly wonderful!!! 🙂

The membership cards have officially been sent out, so you should see them landing in your mailbox within the next two or three days... 🙂

Linda Campbell said:slyseal28, I was just wondering if you happened to catch that email I sent last night to the lady in question? I ran into a few technical hiccups while trying to hit send.

I never saw it... 🤷

Go ahead and try sending it again...

Nancy Hernandez43 said:Dear slyseal28,
I won't be able to sit down and really talk things through with my mother until the end of the week. We're only about 48 hours away from her flight to Aviano, and frankly, I don't have the heart to start digging into anything right now; I wouldn't want to give her more to worry about at such a sensitive time. Regardless, once I finally claw my way out from under this mountain of work, I'll make sure my letter gets to you. Kisses.

Thanks, dear... I'm crossing everything that her results come back perfectly!

dustyranger11 said:Nobody actually knows anything; only the doctors have the answers, and they’re never around. They just breeze through the check-ups and then disappear into surgery. Honestly, maybe my dad would be better off at a specialized cancer center instead of being stuck over at Rib. I haven't had exactly wonderful experiences with them. I don't know if I'm being unfair, but that's just how it feels to me.

Try to take a deep breath and realize that even the doctors are often flying blind until they actually get him into surgery. You have to find a way to build some level of trust—be that person who is persistently annoying yet perfectly polite, someone who is stubborn but remains respectful. I hope you catch my drift... As for the weight of it all, it's incredibly heavy when you're carrying it alone, but remember you have us here. We will listen, and we will talk through this with you. Just stay strong and try to keep your composure... getting worked up won't change the outcome...
We're thinking of you and sending all our support... Hang in there.

My dear friends,

I received a phone call from a woman who has been diagnosed with ovarian cancer. She doesn't have a computer at home, nor does she have access to the internet. She’s going to try her best to find someone with a computer who can show her our site, but in the meantime, let's support her by sending her a letter of encouragement.

She told me briefly that it's Stage III ovarian cancer and that what she needs most right now is support—someone to talk to, specifically someone who has faced this same battle and won.

To all of you here who are currently fighting ovarian cancer, as well as those who have come through the other side: please, send me an email with your story. Tell her how you're fighting, what your diet looks like, or anything else we all struggle with here. Let's put together a letter to let this woman know she isn't alone. Let's encourage her and lift her spirits... All it takes is a few minutes of your time and a stamp.

I know many of you have already shared your experiences in various posts, but rather than me digging through old threads, please just email me your stories directly so I can send them to her on behalf of everyone here.

Whether it's a full story, a formal letter, or just a few sentences of support, please, send it to my email.

We’ve got the full reportage on a DVD, so we're going to upload it to the site. That way, anyone who missed out on catching it can finally watch it...

I just wanted to let you all know that there will be a feature segment on our Association during the "America Live" broadcast starting at 4:00 PM today (I’m not quite sure where we fall in the lineup). You'll get to hear some commentary from Dr. Mirando Mrsić, a medical doctor who has been working closely with us. Be sure to tune in...

Anonymous said:My mother passed away this morning at 10:05, just three and a half months after her diagnosis... While I know I’m going to miss her terribly—and I suspect she’ll be visiting my dreams quite often—there is a certain sense of relief in knowing she is finally at peace. No more pain, no more struggling just to take a sip of water...
The hardest moment so far was watching them carry her out in the casket, but I know the truly devastating part is still ahead when we lay her to rest. I've been leaning on medication all day just to get through, but I'm hanging in there somehow... Anyway, sending my best wishes to everyone else..

My deepest condolences. I am so incredibly sorry... We are standing right here with you.

My dear friends,

I haven't been posting here as often as I’d like because things have been incredibly busy with the New Day Association and the website, but please know I am reading everything you all write. I wanted to update you that the Association is working at full throttle. We are actively recruiting members and designing brochures and pamphlets that will cover the essentials: basic info on malignant diseases, various treatment options, and even socio-psychological advice on navigating life while dealing with cancer.
We’ve actually just welcomed a prominent professor from the University of Chicago School of Economics into our ranks; she’s been fighting breast cancer for six years now. She has spoken out several times about the hurdles patients face and has expressed deep frustration with the state of oncology here in America. You might have even seen her in the news.
I also want to share that we are reaching out to public figures who have recognized our determination, our grit, and our sheer willpower.
Furthermore, we have been invited to testify before the US Congress, where we intend to voice the most critical issues facing patients. In doing so, we will make sure to address problems that affect everyone battling malignancy—we aren't going to limit ourselves to just one specific diagnosis. Our stance is simple: whether it's carcinoma, sarcoma, melanoma, lymphoma, leukemia, or brain tumors, everyone faces similar struggles. If we want to fix this, we have to stand together. We need to raise our voices as one unified front so we can finally be heard. This won't change unless we insist upon it...
Regarding support, we certainly need it—everything from financial assistance to educational materials regarding illnesses, treatments, and side effects. We truly need you.

To everyone who has joined us so far: thank you so much. Within the next 15 days or so, you’ll receive your membership cards sent directly to your homes. Also, sometime this month, we’ll be organizing an in-person meetup at a garden in Washington, D.C., where we can meet face-to-face and discuss both the challenges and the solutions. For those who can't make it, we will arrange an online gathering instead.
That’s all for now.

Warm regards to all the fighters, the members, and even those who haven't joined yet—please keep writing and sharing information, because a single piece of info might be exactly what someone else needs to survive.

redharbor23 said:Hi everyone.

I just wanted to say how wonderful the work being done on this subforum is; it truly deserves every bit of praise. I stumbled upon this place quite by accident about a month ago, and frankly, you all blew me away. Since then, I've been working up the nerve to finally post a few words myself.
My father lost his eight-year battle with multiple myeloma three months ago. So many times, neither my mother nor I could even talk to our close friends about it, because, unfortunately, this is something only people who have actually lived through it can truly grasp. We had no one to turn to for information; we were essentially stumbling around in the dark, just trying to push forward—I spent my time devouring medical texts, digging through the depths of the internet, and constantly chasing down doctors. I see that there’s finally a dedicated American website out there providing all the necessary info on myeloma. It's about time.
We had to learn everything the hard way. There are no easy paths when dealing with a disease like this, but if I can offer anyone advice, share my experiences, or even just provide some psychological support—which, at the end of the day, is what everyone needs most—I am more than happy to do so. When someone is battling an illness, they need every ounce of help and support available.

Stay brave, everyone. Don't let it break you. There are many of us here who understand exactly what you're going through, and you are not alone. Just take it one day at a time. Even though my father knew his condition was incurable, he never once faltered; he possessed such incredible faith and a profound will to live. Keep fighting. I wish you all nothing but success and strength. 👍

That was beautifully written, and I am so deeply sorry for the loss your family has endured. Please, take a look at our association and the forum where people reach out to help one another. Perhaps you might find a way to help us too...

gentlemoose62 said:And now, I want to share my joy with all of you. I just had my follow-up appointment for my ovarian cancer, and everything is GREAT! My doctor actually told me we can move to once-a-year checkups! Can you believe it? Once a year! If someone had told me that seven years ago, or even after my last relapse four and a half years ago, I would have thought they were just being patronizingly kind.
But here it is, the truth: I'm not dreaming, a CURE is possible, even after a recurrence.
My doctor said, "you can consider yourself cured," and that was the first time anyone has ever dared to say something like that to me.
I truly want to use my experience to encourage every fighter out there—to let you know that no matter what happens next, you must never, ever give up!
And finally, I want to dedicate these last words to our greatest warrior, DINI, who is currently recovering from surgery😁. We are all sending our thoughts and prayers your way—please reach out when you have some good news!

Dear, I really expect you to post your story on the "How did you recover" forum. This is such beautiful, absolutely wonderful news!!!

Sophia Roberts53 said:There’s going to be a segment on medical treatments in China airing today on ABC during their "America Live" program.👍

There was a feature on the ABC news broadcast last week... So, here we go again, is it?

I couldn't agree more. I’m firmly convinced this whole treatment is nothing more than a massive scam. There was even a doctor featured on the program who went on the record to confirm exactly that.

The absolute worst part of this whole ordeal is that hollow, fraudulent promise of a "cure." It’s dangerous. You end up with people being manipulated into walking away from their actual medication, which is nothing short of reckless. I keep thinking back to that charlatan, Shen Chi—it's exactly the kind of deceptive nonsense she used to peddle.

Charles Newman said:I’m so grateful for everything we've shared here, but unfortunately, my mother passed away early this morning. I wish the rest of you nothing but better endings.

I am so sorry... please accept my deepest condolences.

crimsoncrane3 said:Forgive me for crashing this thread out of nowhere, but I’m hoping someone here might be able to shed some light on a situation.
I just started a separate thread titled ''Urgent, urgent!!! Treatment in China!!'' so please take a look at what I wrote there (to avoid repeating myself), and I’d be so grateful if you could tell me if you know of any specific cases actually cured over there.
The reason I'm asking is that a group of patients with multiple sclerosis is currently preparing to head to China, and my brother-in-law is planning to go with them (he doesn't have MS himself, but he's dealing with another serious illness).
Word on the street is that they've successfully treated quite a few people with sclerosis over there.

If anyone has any information at all, please help.

There was a report on a news program this week—something like a live national broadcast—discussing an association that raises funds to pay for medical treatments in China.
They were talking about cerebral palsy, and I think they mentioned multiple sclerosis as well.

The main takeaway was that this association is charging way too much for these treatments. There was a doctor on the program (I can't recall her name) who pointed out that the actual treatments and accommodations in China are significantly cheaper and more affordable than what this association claims.

Furthermore, she emphasized that diseases like these aren't "curable." You can use therapies and medications to manage symptoms and control the progression of the disease, sure, but you can't achieve a permanent cure.

The real danger with these "Chinese-style" methods is making sure you don't end up with someone who tells you to abandon your medication and conventional medicine entirely.

There was even a Chinese physician practicing here in the States who weighed in on the matter. They even brought up that whole scam involving that woman, Shen Chi (I'm not sure of the exact spelling), who charged exorbitant fees for seminars and CDs while telling people to stop taking their prescriptions. And those who followed her advice? They died. Apparently, authorities in Canada are looking for her, and maybe even investigators here because of suspicious patient deaths. That's the reality of these alternative methods...

crimsonmason44 said:The situation here is pretty grim... My dad’s been stuck in the hospital since Sunday after the paramedics picked him up. What really gets to me is the total lack of communication from the doctors; they aren't telling us anything. He’s so weak, constantly vomiting, dealing with intense vertigo and headaches. He needs an urgent brain CT, but the scanner at our local hospital is broken.😠My mom is meeting with his doctor today, so hopefully we’ll get some clarity then. I can't even go see him because my job expects me to pull extra hours all day—nobody there seems to have any empathy for what we're going through. Sigh... Hang in there to all the fighters out there, stay strong.👍

We're standing right there with you...

Laura Kelly91 said:My dear friends,
I’ve been away for a while. Unfortunately, some terrible things have happened. My father passed away on January 10th, after suffering through several days of agonizing pain. His condition just took a sudden, sharp turn for the worse... It was horrific, and honestly, it still feels that way. He left us only eight months after my mother, who fought cancer for twenty days before losing her battle. He was diagnosed with a tumor just three and a half months ago... At least they are together again now, even though I am endlessly grieving—or rather, I feel completely numb.
Now, I want to be here to support you all in your fight. Despite everything, I truly believe that victory is possible. We have to try everything; there are just so many success stories out there. So please, keep pushing and keep fighting. You can never give up!

Please accept my deepest condolences. I am so, so sorry for your loss...

We are standing right here with you... just as you are with us...