Support resources for families dealing with cancer and other serious illnesses

Angela Wright said:And just like President Reagan used to say, "My friends, we did it!"...

Sutent and Tarceva are being added to the Medicare formulary starting March 1st!🎉 🙂 🙂

Get the treatment you need, folks!👍

Moving forward!

Hats off to them, I truly tip my cap.👍
I also want to wish a successful recovery to everyone who will be using these medications.

quietbison14 said:Thanks for getting back to me so fast. I just have this info from the national news stating one hospital is "Karolinska" in Stockholm and the other is called "...German Krefeld..."
Is there any way to get in touch with them? Or better yet, is there any new information regarding where I could actually reach out to the doctors?

Thanks for listening... please, I need help.

Alright, here are a few addresses over in Germany, including Krefeld..
Krefeld:
Phone: (02151) 82 560-0
Fax: (02151) 82 560-11
http://www.gamma-knife.de/

Aachen
Phone: 0241 - 80 89 139
Fax: 0241 – 8888 432
E-mail: gamma.knife@rwth-aachen.de
gamma-knife@post.klinikum.rwth-aachen.de
http://www.ukaachen.de/content/page/2350482

Frankfurt
Phone: 069/677 359 10
Fax: 069/677 359 11
e-mail: gkf@gkfrankfurt.de
http://www.gkfrankfurt.de

Hanover
Tel.: ++49 (0) 511/27092155
FAX: ++49 (0) 511/27092706
http://www.ini-hannover.de/de/Allgemein/kontakt.htm

Angela Wright said:As President Reagan once famously put it: "My friends, we did it!"...

Sutent and Tarceva are being added to the Medicare formulary starting March 1st!🎉🙂🙂

Get treated, everyone!👍

Keep moving forward!

🙏 🙂Good luck to everyone!

shadowmason6 said:Don't say things like "he doesn't have much left." My mother will be turning 66 in two months, and I really hope she’s around for a long time! Sure, maybe she's handling the chemotherapy a bit easier than your grandfather is, but I truly believe this is just a temporary phase for him and he'll recover. I've read that the side effects from chemotherapy don't necessarily dictate how successful the treatment actually is, so please, don't let his current state discourage you.
By the way, my grandmother lived to be 93, and the women in my family tend to live quite long... so my mother's illness came as a real shock to me :-(

What is your grandfather saying? If he has the will to fight and try, and if a few months of suffering means—hopefully—extending his life, then I think it's worth trying, provided there's a future with better quality of life without chemo...
Though, I suppose the aforementioned Lothar H. probably wouldn't agree...

...well, I haven't really been posting much lately. We're waiting on the results from my mother's CT scan and her blood work, so I'm, to put it mildly, a nervous wreck...

And sad... just incredibly sad because of Dina, as are the rest of us... I'm speechless... I think I'll find myself reading her posts whenever I feel like I'm losing my courage or my drive to keep going.
My sincere condolences to everyone who knew her and those who miss her even more.
May she rest in peace up there...

Maybe I phrased that a bit poorly... the doctors are giving him about a year with chemo, which is such a short time... so the question is whether to put him through the misery of chemo or just let things take their natural course... 😢without chemo

Sandra Rogers48 said:maybe I didn't express myself quite right... his doctors are giving him about a year with chemo, which is incredibly short.. so the question is whether to put him through the ringer with chemo or just let everything take its natural course... 😢without chemo

Look, nobody can give you a 100% guarantee on what’s going to happen or how it’ll play out. You have to take every single chance offered to you and fight! Leaving things entirely up to fate has one—and only one—outcome, and none of us want to see that, right?! Besides, if the chemo works and buys more time, maybe there's a chance to jump into a clinical trial. You have to fight for every single new day. We’re all mortal; we’re here today, and tomorrow we might be gone, whether we were healthy or sick. Life is just a series of battles; it's one big, continuous struggle.

Take our association, for example... honestly, how many of you actually believed it was possible that someone would push to get an expensive drug added to the Medicare formulary and actually succeed at it, especially during a recession like this?!
Come on, let's be real...

Anything is possible.

Unfortunately, Tarceva just didn't cut it (even with that insane price tag). It looks like, after a certain point, it actually ends up fueling the cancer's growth.

Lung cancer patients are usually prescribed either Tarceva (erlotinib) or Iressa (glefitinib). Doctors will probably tell the unfortunate patient that the drugs stop the growth of the cancers by blocking the signaling from a molecule that's vital to the survival of the cancer cells.
What they might gloss over is that these drugs only really work for about 10 percent of people, particularly those dealing with non-small cell lung cancer (NSCLC)—the kind non-smokers often pick up. And once a little time passes? They become totally useless—actually, they end up encouraging the cancer to spread.
Oncologists know that the drugs seem to trigger fresh tumor growth, which is known as acquired or secondary resistance, but researchers are still scratching their heads trying to nail down why this happens.
In one study, they followed six NSCLC patients on these drugs, and three of them ended up developing new tumors.
They couldn't quite pin down why the tumors build up such a nasty resistance to the meds, but they did confirm that the new mutations held gene variants "they had come across before." Honestly, I guess that's some small comfort.

Jamie Rivera78, come on, just drop the link to the page you pulled this from. This copy-paste job doesn't really tell me much.

Angela Wright said:Kind of like how President Reagan used to say, "My friends, we did it!"...

Sutent and Tarceva are finally hitting the Medicare list starting March 1st!🎉 🙂 🙂

Get treated, people!👍

Keep pushing forward!

Bravo👍Way to go!!🙏

Angela Wright said:Jamie Rivera78, come on, drop the link to the actual page you pulled this from. This copy-paste job isn't telling me much.

http://www.wddty.com/033638003695753...on-t-work.html

Here’s the deal on Sutent:
http://www.kidneycancerresource.com/index.php/Sutent

Look, I’m not trying to go out of my way to mess with the association's work, but I feel like people need the full story. To be blunt: Sutent doesn't "cure" anything. At best, it might squeeze out a few extra months of life—and honestly, even that isn't a proven fact. From what I'm hearing, the side effects are brutal. I'm just not sure that's what patients are actually signing up for. It's a similar story with Tarceva.
Bottom line? Sure, Sutent and Tarceva might work in certain cases, but whether they actually extend life is a massive question mark. To me, the cost-to-benefit ratio looks pretty lousy.

Angela Wright wrote about that book *Chemotherapy Cures Cancer*, and how the world is just a flat plate:
"My honest impression—of someone who clearly did such deep and wide-ranging research, wrote a whole book, and then uses the intro to her show to spout total nonsense about heart cancer not existing, while also claiming doctors failed to explain why cancer doesn't attack the heart ( ), immediately destroys any sense of competence or credibility in my eyes. I didn't even bother watching any further. This guy obviously doesn't grasp basic cancer facts, let alone offer any kind of sensible alternative treatment."

Can you tell me how many people in America actually have heart cancer?
I haven't heard of a single case.
Watch the show and you'll see there's some logic to this story. Unfortunately, everyone reading this post can see that all the sick people are slowly slipping away, which just proves the author's point. Plus, the cost of chemotherapy is unrealistically high and frankly inhumane considering the results. If the price were realistic, the pharmaceutical industry wouldn't be seeing massive profits—well, maybe slightly less than massive. And honestly, making a killing off other people's misery isn't exactly classy.

Matthew Hall37 said:Jane wrote about that book "Chemotherapy Cures Cancer, and the Earth is Flat":
"My honest impression? Someone who did such deep and wide research, wrote a whole book, and then uses the intro to their show to spout total nonsense about heart cancer not existing—while claiming doctors didn't give them an answer as to why cancer doesn't attack the heart ( ), immediately kills their competence and credibility in my eyes. I couldn't even bother to keep watching. This guy clearly doesn't grasp the basics of cancer, let alone offer some sensible alternative treatment."

Can you tell me how many people in America actually have heart cancer?
I haven't heard of a single case.
Watch the show and you'll see there's actual logic to this story. Unfortunately, everyone reading this post can see that all the patients are slowly slipping away, which just proves what the author is saying. Plus, the price of chemotherapy is unrealistically high and just plain inhumane given the results. If the price were realistic, Big Pharma wouldn't be seeing these massive profits—maybe just slightly less than massive. And honestly, getting rich off someone else's misery isn't exactly classy.

Heart cancer is such a basic question that it's barely worth debating. I truly believe most oncologists haven't even seen primary heart cancer in their entire careers.
And it's pretty easy to conclude that current therapies just aren't working. Looking at the way things are heading, I'm afraid we won't see any change for a long, long time.

Jamie Rivera78 said:http://www.wddty.com/033638003695753...on-t-work.html

Here is some info regarding Sutent:
http://www.kidneycancerresource.com/index.php/Sutent

I’m certainly not trying to undermine the work of the association, but I believe the full truth needs to be out there. To be blunt, Sutent doesn't "cure" anything; at best, it might extend life by a few months. And even that isn't a settled fact. From what I hear, the side effects are quite severe. I'm not sure that's what patients are actually signing up for. It seems to be a similar story with Tarceva.
So, while Sutent and Tarceva undoubtedly work in certain cases, whether they truly extend life is debatable. To me, the cost-to-benefit ratio just looks unfavorable.

To be specific—our association has never once claimed that Sutent or Tarceva are cures. We speak strictly about extending life. You mentioned "a few months"... but you aren't seeing the whole picture. People who have reached out to us have provided their own medical documentation proving that Sutent has been incredibly effective for them. Initially, many of these individuals were buying Sutent on their own, through various means... One woman who appeared with us on a show even sold her house to afford it... Her tumor shrank by as much as 80%... Most of them eventually had to stop taking the medication simply because they ran out of money... Most were forced into a 3-4 month hiatus... During that time, the tumors began growing again... Those same people continued to fundraise for the medicine, and once they raised enough, they resumed treatment. And then, the tumor growth would stabilize again...

It's clear you haven't followed the complete narrative regarding Sutent.

As for the side effects—yes, serious side effects can occur, much like with other targeted therapies. They are far from harmless, certainly. And frankly, I don't recall anyone in our association ever claiming that Sutent or Tarceva were without side effects.
What people like you fail to grasp is that those fighting for these drugs are actually fighting for just a little more time with their loved ones.

For some patients, these drugs will work, at least for a while... For others, unfortunately, they won't... That is the risk the patients themselves take. And what the rest of us, who stand by them, should be doing is supporting them and encouraging them in their difficult struggle.

slyseal28 said:Look, let’s get real—our association never claimed Sutent or Tarceva were a "cure." We strictly talk about extending life. You say it only buys a few months? You're wrong. People who reached out to us proved through their own medical records that Sutent actually worked for them. At first, these folks were buying Sutent on their own, finding any way they could... One woman who appeared on our show even sold her house... Her tumor actually shrank by as much as 80%... And most of them eventually had to stop taking the meds because they ran out of cash... Most were forced into a 3-4 month break... During that gap, the tumor just started growing again... Those same people kept fighting for the money for the drugs, and once they scraped it together, they'd start up again. And the tumor would stop growing...

It’s obvious you haven't been following the whole story with Sutent.

And regarding side effects—yeah, they can be brutal, just like any other targeted therapies. They aren't harmless, far from it. And honestly, I don't recall anyone in our association ever saying Sutent and Tarceva were side-effect free???

What people like you just don't get is that when people fight for these drugs, they're really just fighting for a little more time with their families.

For some patients, these drugs work, at least for a while... For others, unfortunately, they won't... That’s the gamble the sick have to take. And what the rest of us, standing by them, should be doing is supporting them and giving them courage in their fight.

To be blunt, Sutent stops cancer growth for an average of 8 months. That's the truth. Since it's an average, it means in some cases, it'll be even better.
I hear you, every extra second matters. For the patients and for their families. But, in my opinion, you guys as an association should also be talking about other types of treatment that show massive success. Don't shy away from alternatives and don't just hunt for scammers. (Trust me, there are fewer crooks out there than in Big Pharma.) Why not mention Dr. Simoncini's method? Or combined MMS Therapy? Don't sit around waiting for 100 clinical trials before you start mentioning them. If you wait for that, you'll be waiting forever. Simply put, nobody wants to fund it because treating people that way is dirt cheap, so it's not profitable for the pharmaceutical industry. (Sadly, they'd rather you sell your house just to afford a monthly dose. They'd rather strip you to the bone in your final months.) Why not present all the options to the patients?
Don't get me wrong, I'm not out here preaching charlatans, but I know there are way better options out there than what mainstream medicine offers right now. Somehow, you guys come off like you're just an extension of the pharma industry. I doubt that's what you want, but that's how it looks.

Matthew Hall37 said:Jane wrote about the book *Chemotherapy Cures Cancer, and the Earth is Flat*:
"My honest impression of someone who has supposedly conducted such deep and wide-ranging research, wrote a book, and then uses an introduction to a show to spout total nonsense about heart cancer not existing—while further claiming doctors didn't give him an answer as to why cancer doesn't attack the heart ( )—is that he instantly destroys his own competence and credibility in my eyes. I didn't even bother trying to watch any further. This guy clearly has no clue about basic cancer facts, let alone offering any kind of coherent alternative treatment."

Can you tell me how many people in America have heart cancer?
I haven't heard of a single one.
Watch the show and you'll see there is logic to this story. Unfortunately, everyone reading this post can see that all the patients are slowly passing away, which proves the author's thesis. Besides, the cost of chemotherapy is unrealistically high and inhumane considering the results. If the price were realistic, the pharmaceutical industry wouldn't be seeing massive profits, just slightly smaller ones. And it isn't exactly nice to get rich off of other people's misery.

What does the number of heart cancer patients in the US have to do with the fact that a man stated a falsehood regarding the non-existence of heart cancer? Cardiac sarcoma is rare, but it exists.
Here is a concrete answer to your question:
Recently, at our association, we learned about a case of cardiac sarcoma in a major US city, while slyseal28 was trying to dig up as much information as possible to help her husband, whose sarcoma is positioned near the heart.
Look, everyone is entitled to their opinion. Personally, I build mine on scientific facts and evidence, and I have endless faith in people like Dr. Đikić and Radman. Anything that doesn't rest on knowledge and scientific facts and postulates, but instead relies on some junk, a hypothesis, or misinformation, I simply cannot consider "safe." Sorry, but that's just how my brain is wired.🤷

Jamie Rivera78 said:Specifically, Sutent, on average, stops cancer growth for about 8 months. That’s the reality. And since that's just an average, some people will see even better results.
I agree—every extra moment of life matters. It matters for the patients and for their families too. However, I feel like you guys, as an association, really ought to be promoting other types of treatment that show incredible success rates. Don't shy away from alternatives, and don't just hunt for scammers. (Trust me, there are fewer crooks out there than in Big Pharma.) Why wouldn't you talk about Dr. Simoncini's method? Or combined MMS Therapy? Don't sit around waiting for a hundred clinical trials before you start mentioning them. If you wait for that, you'll be waiting forever. The simple truth is that nobody wants to fund them because treating people that way is far too cheap, making it unprofitable for the pharmaceutical industry. (Unfortunately, they'd rather you sell your house just to afford a monthly dose of medication, stripping you down to nothing in your final months.) Why shouldn't patients be presented with every single option available?
Don't take this the wrong way—I'm not advocating for charlatans—but I know there are much better options out there than what mainstream medicine currently offers. Honestly, you're starting to sound like a mouthpiece for the pharma industry. I doubt that's your intention, but that's how it's coming across.

Look, please don't try to tell me what I should or shouldn't be doing🙄! We DID WHAT WE THOUGHT needed to be done. If you think we aren't doing a good enough job, then START YOUR OWN ASSOCIATION and push for the things you believe in.😠 It’s easy to sit back and say, "you should do this, you should do that," but why don't you step up and actually do something about it, buddy?☕

Listen, you're insulting our intelligence and our emotions, especially since every single one of us here has been directly or indirectly hit by cancer. I tried everything under the sun for my mother—moved mountains, started this thread, helped launch the website, helped start this association... After her surgery, she actually refused chemo and radiation to try alternative routes. She did macrobiotics, completely overhauled her lifestyle, leaned into her faith, visited all those "famous and successful" bioenergetic healers, "renowned" homeopaths, and "expert" herbalists, used radiofrequency treatments, pumped herself full of every "healthy" supplement imaginable... and you know what? She had a relapse almost immediately. Once she went back to chemo and radiation, it slowed the tumor down. It bought us more time together, and it gave me the peace of mind knowing that if Temodal was an option again, I could buy it and give it to her—because at least I knew they weren't lying to us about it being possible. Science is the only thing that ever gave me real answers.

...so please, stop telling me how to run things. If you're such a passionate advocate for what you believe in, we'll do you a favor and give you all the info you need to start your own association. Then you can handle it and provide people with actual information backed by relevant scientific evidence. Everything else is just hearsay and incredibly dangerous territory that often turns out to be fatal (because we aren't going to sit around waiting for a hundred studies like you suggested—it's not like researchers conduct studies for fun), and that is exactly what you're promoting here. That *is* the charlatanism. It's not good enough for anyone with half a brain, so believe whatever you want.😳

p.s. I’m still sitting here waiting for an answer to the request and invitation I’ve put out multiple times on this forum ages ago: I want someone to step forward with their full name and actual, relevant medical records showing their condition both before and after an alternative treatment that actually worked for them....
Lepina is the only one who saw any kind of result through fasting. I personally know people who tried fasting and ended up dead. When it comes to cancer, you simply never know for sure—that’s just a cold, hard fact, whether the person is using alternative methods or conventional medicine. That's just the nature of the disease.

Jamie Rivera78 said:Why shouldn't we talk about Dr. Simoncini's method? Or combined MMS Therapy? Don't wait for a hundred clinical trials before you even bring it up. If you wait for that, you'll be waiting forever. Quite simply, nobody wants to fund it because treating people that way is far too cheap, making it unprofitable for Big Pharma. (Sadly, they’d much rather you have to sell your house just to afford a monthly dose, stripping you down to nothing in those final months of life.) Why shouldn't all options be laid out for the patients?

I've read about MMS, and frankly, I think it's terrifying that you're spreading misinformation to people, suggesting it can cure almost any ailment.

I'll just quote one sentence that perfectly encapsulates my stance on MMS: "I wouldn't go near that stuff without a hazmat suit, a gas mask, and oxygen tanks!!!"

Our association promotes alternative treatments—not outright charlatanism. My faith in medicine remains strong, and as long as I have even an ounce of common sense left in my head, I am going to trust doctors first and foremost.
As for the exorbitant cost of medication—that is an entirely different issue and a separate battle altogether. That is precisely why we fight to get these drugs added to the insurance formulary.

Jamie Rivera78 said:To be precise, Sutent stops cancer growth for an average of eight months. That’s just the reality. And since we’re talking about averages, you have to assume that in certain cases, the results might even be better.

And honestly, nobody was claiming otherwise... For some, it might extend life by six months; for others, maybe two years; and for some, unfortunately, it won't work at all.

Jamie Rivera78 said:... However, I think you all, acting as an association, should also be promoting other types of treatments that show great success. Don't turn your back on alternatives and don't just go hunting for scammers. (Believe me, there are fewer crooks out there than in Big Pharma...)...

... Don't sit around waiting for a hundred clinical trials before you start talking about it. If you wait for that, you'll be waiting forever. Simply put, nobody wants to fund them...

Angela Wright said:... If you think we aren't doing enough, then START AN ASSOCIATION and push for—and work on—whatever it is you feel should be happening...

... meanwhile, I am still waiting for a response to the inquiry and request I’ve posted here several times quite a while ago—which is for people to identify themselves by name and provide relevant medical documentation from before and after an alternative treatment that actually helped them....

slyseal28 said:... Our association promotes alternative ways of healing—just not charlatan methods. My trust in medicine is deep, and as long as I have any sense left in my head, I will trust doctors first and foremost...

I agree with Angela; if you want change, start an association and get to work, because no one else is going to step up or throw money at this (Jamie Rivera78 made it very clear what the interests and PROFITS of pharmacists look like)😠

I’ve actually already discussed this (in writing) with slyseal28 and Angela, so they have a better idea of where I'm coming from. No one is going to run a hundred clinical trials for us, nor will any patient just volunteer to send over their medical records on their own (the exceptions will prove the rule, of course)! If we actually want to achieve something, we need to start moving now—so that we (the future patients who might end up facing these kinds of cancers) can actually benefit. It’s already too late for our mothers, grandmothers, and grandfathers!

So, the bottom line is that conventional medicine doesn't work every single time (though clearly, some people do recover), and alternative medicine doesn't always work either (yet again, some people are fully healed). I am CONVINCED that recovery is highly specific to the individual patient. We just need to figure out the pattern—whether it depends on gender, blood type, age, diet, location, lifestyle, and so on. Once we uncover those patterns, people will actually know WHICH therapy works for them, rather than wasting massive amounts of money on treatments with questionable results.
Why don't pharmaceutical companies demand these kinds of regulations—or better yet, why don't they publish them if they actually know about them? It’s pretty simple, really: it brings them much higher profits 😠 if EVERY single patient takes their medication, rather than just the 10% who we actually know will truly recover because of it. 😠 😠

I sincerely hope that we can find the strength and the willpower to take a stand against these profiteers and build something for our own better future—instead of just bickering here on the forum, we should unite and channel all that energy into something that actually helps us all and serves the greater good!

Angela Wright said:And just like President Reagan used to say: "My friends, we did it!"...

As of March 1st, Sutent and Tarceva are being added to the Medicare formulary!

Get treated, people!

Keep moving forward!

Finally, some actual good news in this thread!
Huge congratulations to everyone involved!!!!!! 🙏🙏🙏🙏
Believe me, I'm celebrating this like I'm the one who actually needs these meds! 🙂👋👋

I am certain you'll all be getting golden tickets to heaven because of this! 😉

slyseal28 said:I’ve been reading up on MMS, and honestly, it’s terrifying how you guys spread this fake news that it can cure basically every disease out there.

I’m just gonna quote one sentence that sums up my entire take on MMS: "I wouldn't even go near that stuff without a hazmat suit, a gas mask, and oxygen tanks!!!"

Our association promotes alternative treatments—not straight-up snake oil. My faith in medicine is rock solid, and as long as I have even a shred of common sense left in my head, I’m going to trust doctors first and foremost.
As for those sky-high drug prices? That’s a whole different beast and a completely different fight. That’s exactly why we push so hard to get medications added to the coverage lists.

MMS is nowhere near being snake oil. Maybe you just haven't done your homework, so you ended up swallowing whatever the first doomsday prophet told you.
Plus, you're being totally hypocritical here. EVERY single cytotoxic drug is way more toxic than MMS. It’s not even surprising, considering those things were developed using mustard gas as a base.