Posts by slyseal28

slyseal28 said:A reporter from Fox News reached out to me. They're putting together a segment on melanoma. Is there anyone here fighting melanoma who would be willing to give a statement for the broadcast?

Dandelion_seed reached out to me—thanks, dear! And please, tell them the honest truth about how things really are.

A reporter from Fox News reached out to me earlier today. She’s putting together a segment on melanoma, and she’s looking for people who have personally dealt with the disease to share their stories on camera. Does anyone here want to provide a statement for the broadcast?

Check out the latest updates here.

At this point, we aren't just fighting for those battling soft tissue sarcomas anymore. This has evolved into a fight for everyone suffering from rare and debilitating diseases. We need to pull together and support them—every bit of help counts.

Angela Wright said:Thanks.
In my experience, whenever you even mention immunostimulants or antioxidants to doctors, they either shut down completely or immediately start acting like they've found a miracle cure—even when it’s obvious the patient isn't looking at it as a "cure" for cancer, but rather just something to help them endure the treatment itself.
I’m sitting here waiting until I’m blue in the face for a legitimate expert, a doctor, or preferably an oncologist, to step up and say: "Yes, this is good, I recommend it, and it will help you," and actually stand behind that statement. As a member and one of the founders of the Patient advocacy group, I am constantly in contact with a vast number of patients, and everyone I've spoken to regarding this specific "issue" has encountered the exact same reaction from their physicians.
If these studies are truly as groundbreaking as they claim, I’ll only say one thing: It was about time something like this was even invented.👍, but I would love to see doctors validate this through their own clinical practice.

I met that Dr. Slavoj Žižek today. She reached out to us through the association and sent over some text regarding Inocell, and we ended up crossing paths with her today while we were heading back from Rib. To be perfectly honest, I wasn't impressed.

The first thing that rubbed me the wrong way was her claim that this drug is excellent for all types of malignancies. A universal cure???

Secondly, she mentioned that back in the 90s, she had cystosarcoma and refused both surgery and standard therapy, choosing instead to heal herself through a strict diet (no meat, no fish, just fruits and vegetables). I did a little digging into that specific tumor type and found there are both benign and malignant variants.

Since she didn't show me her actual medical records, it's hard for me to take her word that it was the malignant version. But again, that’s just my impression. Call me "Doubting Thomas."

Furthermore, a small bottle costs roughly $122. I forgot to ask how many capsules are actually in one. Regarding the Pigeon, she immediately estimated he needs to take 8 capsules a day without even glancing at his medical history. Yet, she insisted that I bring his documentation to her. That part particularly bothered me.

Perhaps some of you will have better luck and might actually like her. I just wanted to share my take on the situation.

It feels to me like everyone is just looking for a way to profit off oncology patients, and frankly, that gets under my skin. It's just not right.

My apologies if my explanation offended anyone, but I believe this forum exists so we can weigh these dilemmas together. Perhaps I'm mistaken...

Angela Wright said:Here’s the rest of the story:
I’m actually tearing up here. I feel completely disenfranchised in this miserable country I was born into. I can’t even begin to imagine what Alenka and those in her position are feeling right now.

Honestly, I find myself wondering if there is any point in trying anything anymore in this valley of tears. Maybe the best course of action is to just let the bureaucrats ferment in their own filth and let everything collapse into ruin... my poor fellow Americans! 🙂

We have to take action! We cannot surrender. If the necessary Legal amendment doesn't pass through Parliament, we will take to the streets. There is no other way. This isn't just a fight for those suffering from soft tissue sarcomas anymore; it’s a fight for everyone battling rare diseases. Let’s all stand together and support them!

The organization "The New York Times" has submitted a formal citizen initiative to US Congress to expand the approved indications for treating metastatic soft tissue sarcomas. Our goal is simple, if somewhat idealistic: we want to provide actual support to those battling these aggressive cancers. Please consider signing our online petition, which urges US Congress to fast-track an amendment allowing the use of L01BC05 gemcitabine, L01CD01 paclitaxel, and L01CD02 docetaxel specifically for metastatic soft tissue sarcoma treatments.
To be clear, we are talking about critical oncology drugs—specifically L01BC05 gemcitabine, L01CD01 paclitaxel, and L01CD02 docetaxel. Currently, these medications aren't listed under the specific legal guidelines for treating metastatic soft tissue sarcomas here in the States. However, if you look at global medical literature and standard clinical practice, these taxanes (paclitaxel and docetaxel) and gemcitabine are widely recognized as the standard third-line chemotherapy protocol for this type of sarcoma.

We’ve launched this petition through the help of the news outlet Tomorrow.us.

The reality for people living with soft tissue sarcomas—especially when a tumor recurs—is a grim choice between financial ruin and health. Because hospitals today operate on such strictly limited budgets, patients facing metastatic soft tissue sarcomas often find themselves forced to purchase these expensive drugs out of their own pockets. They simply don't have the luxury of navigating the glacial pace of bureaucratic approval processes just to get the treatment they need:

Let me walk you through how agonizingly slow this process actually is:

Once a patient's condition is assessed and a physician recommends third-line chemotherapy using taxanes and gemcitabine, the doctor submits a formal request along with all medical documentation to their Department Head. From there, it's a coin toss; the Department Head can approve the request or deny it based entirely on whatever remains of the hospital's budget. If it moves forward, the case goes to the Hospital Ethics Committee, which has to decide if the treatment is justified, moral, and ethical. The Ethics Committee only meets once a month. Once they give the green light, the file heads to the Hospital Drug Committee to verify the paperwork before being sent off to the Centers for Medicare & Medicaid Services (CMS). Only after CMS issues its official approval can the hospital finally order the medication. This entire ordeal drags on while the malignant tumor continues to grow. Decisions from CMS tend to move with a certain... lack of urgency. Most patients simply don't have the time to wait for these administrative wheels to turn, leaving them no choice but to buy the drugs themselves just to stay in the fight.

For those who may not be familiar with the nature of these tumors: sarcomas are highly malignant mesenchymal tumors, notorious for frequent recurrence. They account for about 1% of all adult malignancies. In children and young adults, however, they are much more prevalent, making up 15-20% of all pediatric and adolescent cancers. According to data from the National Cancer Institute, roughly 200 Americans are diagnosed with these types of sarcomas annually—a figure that includes both bone sarcomas (like the well-known osteosarcoma) and soft tissue sarcomas.

There are very few drug options available for sarcomas. That is precisely why we are asking for your support. By signing this petition, you are helping us demand that US Congress uses expedited procedures to update the treatment indications for metastatic soft tissue sarcomas to include L01BC05 gemcitabine, L01CD01 paclitaxel, and L01CD02 docetaxel. Let's work together to ease the burden on these patients by ensuring these essential drugs are officially covered for this diagnosis.

Sarcomas are devastating, rare diseases that disproportionately affect the young. Please, keep this in mind.

I am asking you, quite sincerely, to respond to our call for help.

To all our dear supporters,

We are thrilled to introduce the fresh, updated face of our CNN website.

Please, feel free to share your thoughts on the new layout. We are more than open to constructive criticism—and, of course, we won't turn away any compliments 😁!

The entire redesign was handled by the phenomenal creative team over at Dobbin LLC in Washington, D.C. They have a stellar track record with similar projects, having previously developed sites for both the Ana Rukavina Foundation and the National Organization for Rare Disorders.

Keep in mind that work on the site is still very much ongoing. We are currently finalizing several pages and fleshing out the glossary and disease index. So, if you stumble upon a section that feels incomplete, just know that some very hardworking people are currently behind the scenes making it happen. 😉

gentlegull17 said:I originally stumbled onto this site hoping to help an acquaintance who was recently diagnosed with lymphoma. Her financial situation is incredibly dire, so we’ve started chipping in what we can, but frankly, the fundraising is moving much slower than the disease itself. Can anyone tell me if it's actually possible to solicit help online? (I recently saw on some animal rescue websites that they managed to raise $59 for a shelter in just about ten days).
On a side note, I wanted to send my best to everyone here; I wish you all immense strength and perseverance.

(I've been reading through these posts chronologically, skipping around a bit, and honestly, it breaks my heart to see some people fighting so bravely while others just sit around debating the existence of God. PLEASE, just let everyone find their own version of God within themselves!)

Try reaching out to the media; the fastest way to get traction is to have the story picked up by a newspaper or a news station. If you need any specific journalist contacts, just let me know.

Grace Fowler said:Hello, my dear friends!!
I’m back—that bout of bitterness finally passed... I suppose these things are just part of the deal. They hit you, and thank God they eventually pass, even if they leave you feeling a bit weak for a moment. I’ve realized lately that I have far too much downtime on my hands, which leads me down those rabbit holes of useless overthinking. I've decided that's a waste of energy, so I'm going to pivot toward something more productive. Specifically, I want to try compiling everything I've learned into one place—offering some actual advice on how to navigate those crushing moments when you first get that diagnosis. Over the years, I've kept little daily notes and snippets of my life, and I'm planning to weave them all together. For me, those notes were a lifeline; looking back at them always gave me the strength to keep moving. To anyone out there who feels like they can't find the words to express what they're going through: grab a pen and a notebook and just write it down. It truly helped me. I felt completely drained this time around... I am thinking of all of you, sending my sympathies, and keeping you all in my thoughts.
Yours, Grace

Dear Grace, it might actually be a wonderful idea to feature your writings on our organization's official pages. We are actually about to launch a complete redesign of our website very soon, and it's going to be fantastic. We'll have a dedicated space specifically for sharing the stories of those currently fighting and those who have come out the other side. Please, give it some thought.

Best regards, 🙂

Adam Myers22 said:My father is 68 years old and is battling lung cancer that wasn't operable. He’s been undergoing chemotherapy for the last 15 months. All the chemo treatments covered by Medicare have stopped working—we've tried three different types now. As a final resort, we're looking at treatment with Tarcev.
The monthly cost for Tarcev is $6.25. What’s particularly nauseating is that this price includes a sales tax of $1133, which essentially means the government is turning a profit off of people's misery.

I am 33 years old. Every single month, $317 is deducted from my paycheck for health insurance (that 15% hit to my gross salary).
If I end up needing to foot bills like these one day, then perhaps it would be more logical for health insurance to be voluntary rather than mandatory. I’d much rather take that $317 every month and save it for the day when, just like my father, I actually have to
pay for medical care.

The issue of exorbitant drug costs is a constant shadow hanging over oncology patients. An article was released today regarding an unregistered cytotoxic drug that we are currently fighting to get approved for registration.

The New York Post also published the same story.

We are expecting calls for imaging appointments in the next few days, and I will certainly bring up Tarcev during those discussions.

It feels like we’re all navigating this same exhausting cycle of being misunderstood by those closest to us.

If I may jump in, I’ve found that the people who actually stepped up were often those we had just met or people we don't even know at all. It’s a bitter pill to swallow, but the ones we actually expected to be there? They just vanished when things got heavy.

That said, I don't think it's worth wasting any more mental energy on them. The world is still full of decent souls who stand by us regardless. I am genuinely looking forward to the day our association raises enough funds to host a massive get-together so we can finally all meet in person. Sending love to everyone!

shadowmason6 said:Has anyone here actually dealt with this? I’m trying to weigh the value of a PET/CT against a standard CT scan. Does it even make sense to push for a PET/CT before surgery if the CT is already done? Is the detail significantly better, or should I just hold off and save that for the post-op follow-ups?

You can find more info on how PET/CT works right here

To put it in layman's terms—and I'm certainly no doctor here—the main difference is that a PET/CT is designed to distinguish malignant cells from healthy tissue. A standard CT scan really can't tell the two apart. For instance, if there's some old scar tissue sitting in the body, a CT might misread it, whereas a PET scan can spot the difference because it actually tracks cellular activity.

Michelle Flores53 said:Could someone please reach out to me regarding leiomyosarcoma? I’ve been battling this tumor and have tried several different treatment paths, but nothing seems to be working so far. If anyone knows anything at all, please help me. Thank you so much.

read more about leiomyosarcoma here

Grace Fowler said:Hey everyone!!
So, I’m back after finishing yet another round of immunotherapy and ECT over in Germany. Everything went better than expected, and my doctor is actually really pleased with how I'm responding..:-)) .On Monday, I’m heading off to London just because I feel like it. These last few months have been pretty rough, and now I’m finally ready to let loose and enjoy myself...
Dear slyseal28, I was truly saddened to hear your latest news regarding the recurrence. I could try to recount every single emotion swirling in my head right now, but based on my own experiences, once that initial shock subsides, an even deeper sense of defiance takes root. You find this extra reservoir of strength to fight this thing. I'm keeping my fingers crossed tightly for you, but I genuinely believe you’ll come out on top once again. To anyone else feeling stuck in the thick of it, I’m sending hugs and a massive surge of positive energy.. Sincerely, Vasa din :-)

Grace, that is wonderful news! Have an amazing trip and soak up every minute!

And you're absolutely right—that defiance is already kicking in, and we're moving forward in this fight against this monster! We're armed and ready, and all three of them are going down!

Thanks to everyone for the support, love you all!🙂

We went in for follow-up CT scans of the chest, abdomen, and pelvis yesterday. To say the results were a disaster would be an understatement. That damn sarcoma has come back, and it’s back in full force—appearing in three different spots.

Excerpts from the chest CT report: "On the left, there is a markedly high protrusion of the rib; along the lateral thoracic wall, a soft tissue expansive round mass measuring 3.7 x 3.3 cm is visible. Near the aortic arch and pulmonary artery, an irregularly shaped soft tissue expansive mass is also seen, and further down, anterior to the cardiac apex, there is a polycyclic expansive mass measuring 11.8 x 5.7 cm. A smaller soft tissue expansive mass is also noted on the left dorsal side in the posterior recess behind the spleen."

Excerpts from the abdomen and pelvis CT report: "Dorsal to the left, against the posterior abdominal wall behind the diaphragmatic crus, there is a larger oval-shaped soft tissue expansive mass measuring 5.6 x 5.0 cm; more anteriorly, near the diaphragmatic crus latero-aortally, another round mass is visible, almost inseparable from the larger one."

Basically, the report is a wreck. We weren't expecting this. I've been thinking about the possibility of a recurrence, but I never imagined it would happen this fast. And in three places, no less. We went straight to our specialist to hammer out a game plan:
The recommendation is third-line chemotherapy: Gemcitabine and Docetaxel. On Monday, we have to file the paperwork to get this treatment approved because, naturally, these specific drugs aren't on the standard coverage list for soft tissue sarcomas. We’re planning for a second cycle, followed by another CT scan. If this doesn't work, we move to Yondelis. Yondelis is that drug that isn't officially approved here in the States, and the monthly treatment costs roughly $11,000.

Surgery is also on the table—possibly even two separate procedures. We need to consult with the thoracic surgeon, Dr. Šantek, and most likely an abdominal surgeon as well. But we'll deal with that when the time comes.

How have we taken this news? It’s been hard. We’re back on the front lines, right in the thick of it again. We need to pull ourselves together, process this, and adjust to the new reality. *Sigh*...
Our fight continues. We’ll keep fighting for the approval of Yondelis, and we’ll keep fighting for life. This time, we’re going to need the support of friends and good people. Please, stay with us.

jaderaven6 said:Hi,
I’m a mother whose child is battling and receiving treatment for ALL-type leukemia here in Chicago. He just finished a chemotherapy cycle lasting about 33 days. However, we've run into some complications—nothing life-threatening, thank God, but treating them will require about a four-week break from the main protocol. I’m trying to wrap my head around what happens after this four-week pause. Does the therapy pick up right where those 33 days left off and continue forward? Or does the whole thing essentially reset to day one? Or is there some third option entirely? If it depends on specific clinical factors, I'd love to know. I’m just trying to figure out exactly what to prepare myself for.

Thanks, best regards, jaderaven6

You can find quite a bit of data regarding ALL treatment protocols right here.

Grace Fowler said:Hey everyone!
I don't really have any good news to share :-( To be honest, my test results were pretty rough, so we had to push things back with the German doctor by a week to see if things might stabilize... (my markers, sedimentation, and CRP levels spiked, and we aren't even sure why yet???) But I suppose patience is a virtue.

Grace, I'm thinking of you. Sending you all my strength and nothing but positive vibes! Things have to get better!

Amanda Miller69 said:I am in a complete state of misery right now; I’m tearing myself apart because of my mom, she’s all I can think about. Yesterday, I found out from a doctor in Springfield that there wasn't even a brain CT performed (it just wasn't done), the abdominal ultrasound report was sloppy, and the discharge papers were basically dismissive. My aunt went to the hospital yesterday to get a signature for a colostomy bag that was missing, and her head nurse told her that Mom had already been aggressive there—she wasn't just tearing the bags open, she was refusing to walk entirely. And regarding what she said about passing out when they lifted her? That wasn't it; she actually fell out of bed, and she told my aunt she knew there was no hope left for her. What absolute crooks, I can't even say it. Who were they lying to three or four years ago? It would have been better if they hadn't done anything at all, if they hadn't operated, just to spare her this further agony and suffering. It feels like she was just a textbook case for them to practice on and continue their studies. That’s probably why they didn't bother with her, and I honestly suspect someone told her the truth about her condition, because first she was talking about everything she'd do once she got home, and then she suddenly became completely apathetic. Her friend told me yesterday that she couldn't even walk anymore.
The poor woman is struggling so much right now, and she turned off her phone just so she wouldn't have to deal with anyone. I can't blame her; I'm just endlessly sad.😢
Hang in there and don't give up; stay strong, just like you always have.👍
Big hugs🙂

Amanda, I’ve been following your story for a while now, and I can't help but feel that you might be drawing some of the wrong conclusions here. Your mother underwent surgery, and by doing so, they certainly gave her a fighting chance to live a bit longer. No doctor would have even touched her if her condition were as dire as you’re describing it. I get the impression that ever since you read that pathology report, you've completely misinterpreted a few things. You mentioned metastatic ovarian cancer... and that everything was involved. But that is precisely why such a radical surgery was performed. Your mother needs to recover now... and honestly, in my opinion, what you're doing right now is totally misplaced. I might sound harsh (and I truly don't mean to offend you), but it seems to me like you're mourning her before her time.

Furthermore, you say she's withdrawing... Well, your mother has a colostomy. Honestly, I would shut myself away too because of an ostomy, at least for a while. Please try to understand that everyone needs time to process a shock like this... She has to adjust to this new reality, and by acting this way, you're only making it harder for her. Forgive me again if I'm being too blunt, but I really think you're overreacting. I think you need to pull yourself together and focus more on her during this moment. If I were in your shoes, I would bring her home no matter how difficult it was. Even if it's destined that she passes within two, three, or seven days, then let it be in her own home.

Amanda, once again, please take this in good faith. I don't intend to insult you; I'm just trying to point out that some of your reactions seem off.

jadetinker42 said:Supposedly this specific type doesn't metastasize, but even so, from what I've managed to gather by reading through the reports—layman style, mind you—we’re dealing with a pretty aggressive kind of sarcoma.
Basically, here in Washington, D.C., they don't want to push forward with more therapies, and a repeat surgery isn't even on the table unless we're talking about amputating the leg. Instead, they've referred them to a clinic in Vienna, hoping they might be able to operate on the affected knee and actually save the limb. As it stands, the sarcoma has started breaking through the skin near the knee... and honestly, the whole situation is grim. It takes a massive toll on your mental state; it’s hard enough dealing with it internally, but when you see the physical reality of it, it just hits you. It’s devastating to witness.

All malignant tumors create metastases—that is quite literally the definition of being malignant.

rustyscout31 said:Regarding the idea of a "central hub," let’s be realistic—not all of us live in Washington, D.C. It would be practically impossible to coordinate meetings on a national level. That’s why, for those of us living outside the metro area, this forum feels like a lifeline.
Angela Wright, a special shout-out to you! Sending love to Pusa Fiza, Sandra Evans13 (my dear sister), and everyone else providing such vital support.👍

Angela Wright was actually referring to the association's forum. Our community space was designed specifically to bring together people from various cities, small towns, and even different states. I think you might have misinterpreted her invitation.