Support resources for families dealing with cancer and other serious illnesses

Angela Wright said:Look, please don't come at me telling me what I should or shouldn't be doing🙄! We DID exactly what we thought needed to be done. If you think we aren't doing a good enough job, go ahead, START AN ASSOCIATION and get out there doing what you think is right.😠 It’s easy to sit back and say "you should do this, you should do that," but hey, step up and actually make something happen, buddy.☕

Listen, you’re insulting our intelligence and our feelings, mainly because every single one of us here has been directly or indirectly hit by cancer. I did everything humanly possible for my old lady—moved mountains, started this thread, helped launch the website, even helped start the association... After her surgery, she actually turned down chemo and radiation to try alternative stuff. She did macrobiotics, changed her whole lifestyle, got super religious, went to all those "famous and successful" bioenergy healers, "famous and successful" homeopaths, herbalists, radio therapists, pumped herself full of every "healthy" supplement under the sun... and you know what? She got a relapse in no time. Once she went back to chemo and radiation, it slowed the tumor down. It bought us more time together, and just knowing she could have gotten Temodal again—knowing they weren't lying to us about it being an option—that was enough for me to buy it and give it to her if I could... Science is the only thing that gave me actual, concrete answers.

...so please, stop suggesting how I should act. If you’re such a huge advocate for what you believe in, we’ll gladly help you out by providing whatever info you need to set up your own association, and then you can deal with it and provide people with real, solid information backed by actual scientific evidence. Everything else is just hearsay and incredibly shaky ground that usually ends in tragedy (because we aren't going to wait around for 100 studies like you suggested, as if scientists just run studies for fun), and that’s exactly what you’re pushing here. That’s charlatanism, plain and simple. It isn't good enough for anyone with half a brain, so you can think whatever you want.😳

p.s. I’m still waiting for an answer to the question and invitation I’ve posted here several times already: I want someone with a real name and surname to come forward with actual medical documentation from 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 know plenty of people who tried fasting and just died. With cancer, you honestly never know, and that's just a fact, whether you're using alternative methods or classic medicine. That’s just the nature of the disease.

You guys are doing fine by your own standards. But it’s highly questionable whether that’s actually good for the patients. To put it bluntly, the survival rates for the people discussed here haven't been great. And being one-sided is never the right way to go.
Look, I think you’re insulting people’s intelligence when you assume they shouldn't know anything you don't agree with. Cancer is a serious beast, and a lack of information leads to catastrophe. Do you seriously believe the only truth is whatever the oncologist tells you? Like everything outside that bubble is just total darkness?? I think you're dead wrong.
See, my experiences with loved ones who got sick have been pretty grim. Everyone believed blindly in mainstream medicine, everyone followed every rule to a T, and everyone ended up in a bad way. Not a single one made it past three years from diagnosis. I've talked to countless people who were deeply disillusioned by that kind of medicine, and I've helped many of them with advice. I’m happy that some of them actually improved, even though nobody expected it. So, I'm not nearly as "inactive" as you think I am.
Don't sweat it, if I decide I want an association, I'll make it happen.

Jamie Rivera78 said:You guys are doing "well enough" by your own standards. But whether that’s actually good for the patients is highly questionable. To put it bluntly, the survival rates for the people we've discussed here aren't exactly great. And sticking to a one-sided view is never the right path.
Look, I think you're insulting people's intelligence when you assume they shouldn't know anything you happen to disagree with. Cancer is a brutal disease, and a lack of information leads straight to disaster. Do you honestly believe the only truth exists within what an oncologist tells you? That everything outside their office is just total darkness? You couldn't be more wrong.
See, my own experiences with loved ones who fell ill have been pretty grim. Everyone put their blind faith in official medicine, everyone followed every rule to a T, and everyone ended up in a bad way. Not a single one of them made it past three years from diagnosis. I've talked to countless people who were deeply let down by that kind of medicine, and I've helped many of them with advice. I'm glad to see many of them improving, even when nobody expected it. So, I'm not nearly as "inactive" as you seem to think.
Don't worry—if I decide I want to start an association, I'll make it happen.

You don't get what I'm saying, and you aren't even trying to understand or accept my perspective, but I don't have the time to sit here and explain it to you. I have actual work to do with the association. Chaos
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First off, I’m glad to hear the news about these drugs being added to the coverage list, though I sincerely hope none of you ever actually need them.
From my own experience: my husband took Tarceva 150 for eight months, and my kids and I did everything humanly possible to learn the ins and outs of it. We weighed every factor: the efficacy (we knew it was mostly just extending life, and even then, not for everyone), the side effects (which are certainly not harmless), the cost (roughly $6.75 for 30 tablets), and even the fact that pharmaceutical companies often run buy-two-get-one deals. Beyond that, we held onto the hope that Tarceva would be covered because we went straight to the source at Medicare to find out. After our inquiries and pleas, they explained the registration process to us very clearly and decisively, showing us the documentation to prove that registration was underway and that it was simply a matter of time before it hit the coverage list. Unfortunately, my husband's lymph nodes began to swell, so he isn't taking Tarceva anymore (we got his last box through a hospital commission based on medical documentation). We also gathered a wealth of information from the Jedro association for lung cancer patients, which is led by a wonderful woman, Sandra Karabatić, who is always ready to talk, advise, or help whenever needed.
There hasn't been a huge crowd here on this thread to swap info regarding lung cancer, so there hasn't been much talk about Tarceva specifically, but please don't assume this is some sort of conspiracy. In America, lung cancer is one of the most common types, carrying very grim prognoses, and Tarceva is typically prescribed as a third line of defense after two previous treatments have failed.
Now, for those of us who have already cycled through three or four lines of defense and found the doors slammed shut, we start looking for alternatives. We watched Lothar very closely on "Science Frontiers." To be honest, he didn't reveal some magical new method for extending life (nor would I dare say anything about "cures"), but he didn't say anything negative, either. In his book, he simply catalogs experiences and various treatment approaches; his best advice was arguably his concept of the "contract with the tumor." In reality, once you start thinking maturely—once you really start navigating life on your own—you should sign a contract with your own body: eat healthy, exercise, get enough sleep, don't smoke, skip the alcohol, spend time outdoors, stay kind, and maintain a positive mindset. It increases your chances of never facing cancer in the first place. I don't need Lothar's book to tell me that, so I won't be buying it. We all know these things, yet we are often incredibly irresponsible with our own bodies.
And finally, let's stop arguing over whether heart cancer exists or how prevalent it is. Angela Wright and slyseal28, please don't take it personally. People truly value the work you do (I actually sent a hundred or so signatures toward your petition myself), but you have to be prepared for criticism and the occasional disapproval. Unfortunately, tolerance seems to be a waning virtue in this country and in these times.

steelfalcon15 said:I’m with Angela Wright on this—we need to start an association and actually get to work, because nobody else is going to step up, and they certainly aren't going to hand over the cash (Jamie Rivera78 really exposed how it all boils down to pharmaceutical interests and PROFIT 😠)

I’ve already hashed this out (via email) with slyseal28 and Angela Wright, so they have the full scoop on what’s actually happening here. Nobody is going to run a hundred clinical trials for us, and let's be real: no patient is just going to volunteer their medical records out of the goodness of their heart (exceptions prove the rule!). If we want to see actual results, we have to start moving right now, so that when it's our turn—when we're the ones facing whatever flavor of cancer comes our way—we actually have something to show for it. For our mothers, grandmas, and grandpas, the clock has already run out.

Look, it's obvious that conventional medicine doesn't hit the mark every single time (even if there are plenty of success stories), and clearly, alternative stuff doesn't work every time either (though people recover from that too). I am CONVINCED that recovery is hyper-specific to the individual. We just need to crack the code on why certain therapies work for some people and not others—whether it's based on sex, blood type, age, diet, where they live, lifestyle, etc. Once we map out those patterns, people will actually know WHICH therapy works for them instead of flushing massive amounts of money down the drain on treatments with questionable results.
Why don't Big Pharma companies look for these rules, or publish them if they actually find them? Because they make way more money 😠 if EVERY single patient buys their drug, rather than just targeting the 10% who are actually known to respond to it. 😠 😠

I truly hope we have the grit and the willpower to go to war with these profiteers and build something for our own future. Instead of just bickering on internet forums, we should unite and pour all that energy into something that actually helps everyone and leaves us with something to be proud of!

Chemotherapy might actually help with some rare types of cancer, but that's more the exception than the rule. For the vast majority of patients, chemo is just uselessly poisoning them at the exact moment they should be trying everything to clear out the toxins already piling up in their systems.
It feels like you're looking at this from only one angle. If you want, shoot me a PM; we can bounce some ideas around.

Susan Ruiz76 said:Look, Angela Wright and slyseal28, please don't take this personally. People truly value what you're doing (I actually sent over a hundred bucks myself, maybe more, toward signatures for your petition), but you have to be prepared for pushback. You might run into some disapproval now and then—unfortunately, tolerance seems to be a dying art in this country and in this day and age.

I think we’re being misunderstood. What actually offends me isn't the disagreement itself, but the suggestion and the constant input regarding how we should think, act, or feel, acting as if our actual thoughts and actions are somehow wrong. Like I said before, everyone is entitled to their own opinion, but there really ought to be a baseline level of tolerance, decency, and respect for someone else's perspective. Opinions aren't just pulled out of thin air; we all go through our own private hells that shape the views we hold. Still, those "you should do this or that" suggestions always grate on my nerves. It feels like people here are constantly waiting for someone else to swoop in and fix problems they sense, even if that person doesn't agree with their methods. That’s what gets under my skin. I have my own stance, and I have faith in the work I do alongside others in this association who share my mindset. That is literally the whole point of an association. We aren't some government agency on a payroll, waiting for orders to execute. We operate by identifying issues that the majority comes to us about, turning them into actionable projects, and presenting them to potential donors who can choose to support us or not.
If someone wants to take a different path, they can head back to the sticks... there are ways to turn those "shoulds" into actual ideas by forming their own associations to share those specific viewpoints, and they have every right to do so.

At the end of the day, there isn't some grand philosophy at play regarding tolerance versus intolerance—especially when we are talking about things like MMS, which have absolutely nothing to do with common sense. Why on earth would anyone mess around with substances that haven't been tested or controlled just because some "genius" type claims they work? It’s completely detached from reality and basic logic.

And yes, everything we initiate is for the sake of everyone caught in a coma-like situation. We aren't looking for rewards, royalties, or a pat on the back. We are doing what we believe is fundamentally right and what should have been handled a long time ago. So, frankly, I don't care what anyone thinks. At least, not personally. I do what I believe is necessary and useful, and that is what matters most to me and what gives me strength in life.

Angela Wright said:You don't get what I'm saying, and you aren't even trying to wrap your head around my opinion. Honestly, I don't have the bandwidth to break it down for you. I've got actual work to do at the association. Chaos
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That kind of reaction—just shutting down and being totally intolerant—is always a dead giveaway that someone's run out of actual arguments. Time will tell if you were right or just talking trash.
Good luck with that.

Jamie Rivera78 said:Getting this worked up and showing zero tolerance is always a dead giveaway that someone’s run out of actual arguments. Time will eventually settle the score on whether you were right or just loud.
Good luck to you.

The owl was laughing...☕

Clear out the inbox, Angela Wright😁

Terry Rogers said:check your DMs, Angela Wright😁

I intend to, thanks🙂

Our association is proud to be part of the "Together Against Cancer" public awareness campaign, running from February 6th through February 20th, 2009. We’ll have a booth set up at the Smithsonian Institution (right here in Washington, D.C.) this coming Saturday, February 14th, and Sunday, February 15th, between 10:00 AM and 1:00 PM.

We won't just be sitting behind a table; we'll have actual physicians on hand to give presentations regarding cancer, the diagnostic process, and current treatment options. This is a chance for you to ask those pointed questions—the ones you might feel too intimidated to bring up during a rushed hospital consultation.

On Saturday, Dr. Duke will be joining us. His expertise lies in the more complex territory of rare tumors, specifically sarcomas and melanomas.

Then on Sunday, we'll be joined by a specialist from Mercy Hospital who focuses on digestive tract, head and neck, and CNS tumors. She'll also be covering the nuances of tumor markers and the various side effects associated with treatment.

Please, do stop by. It would be good to see some friendly faces there.

Jamie Rivera78 said:Chemotherapy actually works for certain rare types of cancer, but that’s more the exception than the rule. For the vast majority of patients, chemo is just uselessly poisoning them—especially at a time when they should be doing everything possible to flush out existing toxins from their systems.
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Isn't that exactly what some guy on an online forum said? He had testicular cancer and claimed he'd researched it, saying chemo was the only thing that worked for that specific type back in his 30s... or something like that. It's pretty sad.

Matthew Hall37 said:Jane wrote that chemotherapy cures cancer and that the earth is flat:
"My honest impression is that someone who claims to have done such deep, extensive research, wrote a book, and then uses the show's intro to spout total nonsense about heart cancer not existing—while simultaneously claiming doctors haven't explained why cancer doesn't attack the heart ( )—instantly destroys their competence and credibility in my eyes. I didn't even bother watching any further. This person clearly lacks a grasp on basic cancer facts to be offering any kind of coherent alternative treatment."

Unfortunately, everyone reading this can see that patients are slowly slipping away, which just proves the author's point. Plus, the cost of chemotherapy is unrealistically high and frankly inhumane given the actual results. If the pricing were realistic, Big Pharma wouldn't be seeing these massive profits; they’d just be seeing slightly less massive ones. And let's be honest, profiting off of people's misery isn't exactly great.

It really makes you wonder...🙄 So many questions, so few answers. Not to repeat myself, I already wrote a book about this for for a new day..

People will always find the answer they're looking for—that's one truth right there. They'll never believe anything else, and they'll constantly hunt for flaws, whether it's just one or a hundred.

Hey everyone...
My mom’s been fighting lymphoma for two years now. She headed back to the hospital in New York City yesterday for what looks like a 4-6 week stay. This week, she starts chemo that’s three times stronger than the last round, which was already three times stronger than the one before that. Then, next week, they’re doing a stem cell transplant using the cells they harvested during her last stay. She’s in total isolation right now. I can't visit, and phone calls are basically non-existent because she asked me to just wait until she actually has the strength to talk. Honestly? I feel numb, useless, and terrified. She’s handling it all with this incredible stoicism—she’s tough as nails—but we’ve had better days and worse ones. This time, though, it feels different. It feels like the final stand. Either this works, or it doesn't. I can't let myself spiral, mostly for her sake, but also for my kids. They start firing off a thousand questions the second they see me cry, and right now, it's just so hard...

freethe said:Has anyone here actually tried NUTRILITE supplements? I've personally used several of their products:
1. My mom took their Blueberry with lutein and cleared up her cataracts.
2. My dad takes glucosamine and his joint issues have totally vanished.
3. My kids take their children's multivitamins.
4. I took CLA 500 and Double X for a month and dropped 13 kg, and now I stick to Daily, Omega, and the occasional other vitamin.
Nutrilite is basically sponsored by the biggest superstars on the planet—even LAFC.

Nice pitch.👍

Dana Baker37 said:Hey everyone...
My mom has been battling lymphoma for two years now... Yesterday, she headed back to the hospital in New York City for a 4 to 6-week stay. This week, she’s starting chemotherapy that is three times stronger than her last round, which was already three times more intense than the one before that. Then, next week, they’ll be administering stem cells that were harvested during her previous hospital stay. She’s in total isolation the whole time, so I can't visit, and our phone calls are kept to an absolute minimum because she asked me to let her call me whenever she actually feels up to talking. I feel numb, useless, and honestly just terrified... She's handling it all with such incredible strength; she's a fighter through and through, regardless of the good or bad days... But this time, it really hit me differently—it feels like this is the final showdown, where either she pulls through or she doesn't. I can't allow myself to spiral into despair, partly for her sake, and partly because my kids start firing a thousand questions at me the second they see me crying, and it's just so hard right now.....

Focus on getting everything ready for when she finally comes home. Map out a plan—book some massages, schedule pedicures, go shopping, and pick up little things that might brighten her mood. Just shower her with those small comforts so you can spoil her once she's back.
I know how heavy this is, but try to stay strong and keep the faith... You have every reason in the world to believe things are going to turn out okay.

Angela Wright said:Start getting ready for when they finally come home. Plan everything out—book those massages, schedule a pedicure, hit the shops, and pick up little things just to make them smile. Just shower them with small gestures so they feel taken care of the second they walk through the door.
It’s hard to know for sure. Just stay strong and have faith... you've got plenty of reasons to believe things will work out.

Thanks....that’s honestly such great advice. It'll be good for both of us—just some quality time for the two of us. Thanks again...

Dana Baker37 said:Greetings to everyone...
My mother has been undergoing treatment for lymphoma for two years now... Yesterday, she headed back to the hospital in New York City, where she will be staying for four to six weeks. This week, she begins chemotherapy that is three times stronger than her last round, which itself was three times stronger than the one before that... Following that, next week she will receive stem cell treatments harvested during her previous stay at the facility. She remains in isolation the entire time; I am unable to visit, and even our phone calls have been reduced to an absolute minimum because she requested that she would call me whenever she finds the strength to talk... I feel numb, useless, and frightened... She bears everything with such stoicism, possessing a truly resilient spirit, though there have certainly been better and worse days... But this time, I found myself unsettled by the feeling that this is—or at least, it feels to me as if it is—the final battle... either she recovers this time, or she does not. I cannot allow myself to despair, first and foremost for her sake, and secondly for my children, who immediately pepper me with a thousand questions the moment they see me crying, and it is just so incredibly difficult for me.....

Angela Wright gave you the right advice!

Believe me when I say that I share the exact same thoughts you have poured out here. Every single time my mother leaves for chemo, I am left feeling empty, stunned, existing in some other realm, unsure of how to carry on because every time she departs, it is for an indefinite period: she might be away for two days, three days... a week, or perhaps she may not return at all. Communication is reduced to nothing, and that is arguably what I struggle with most. Believe me, I find myself walking down the street smiling, only to burst into tears the very next moment. Eventually, I come home and tell myself, "don't be a fool," because tears won't help anyone.

Therefore... believe in her and do not give in! Keep the little ones occupied: play with them more, engage more deeply with them, and perhaps they will ask fewer questions.

Those four to six weeks will pass just like that, even if it feels like an eternity right now! I am sending you a massive hug and hoping that this fear subsides quickly and that your mother regains her strength soon! Kisses

Nancy Hernandez43 said:Angela Wright gave you some solid advice!

Believe me, I’m right there with you. Every single time my mom heads off to the Mayo Clinic for chemo, I just feel... empty. Stunned. Like I’ve been transported to some other dimension. I honestly don't know what to do with myself because it feels like she could be gone indefinitely every single time. You can stay in a foreign country for two days, three days... even weeks. Or you might just never come back at all. Communication is basically non-existent. That’s easily my biggest trigger. Honestly, I’ll be walking down the street, laughing my head off, and then a second later, I'm breaking down in tears. By the time I get home, I just look at myself and think, "What an idiot." Because let's face it—tears aren't going to fix anything for anyone.

So... just hang in there and don't let them get to you. Keep the kids busy. Play more, actually get in on their level, and they’ll stop asking a million questions.

It’ll pass in four to six weeks. Just like that. Even if it feels like an eternity right now. Sending you a huge hug—really hoping that fear starts to fade soon and your mom finds her strength again. Hang in there.

Like I said before, this is my absolute worst nightmare, but I know I have to stay positive. We’re talking once a day now. It’s a 24-hour chemo cycle, and they had to put in a catheter because her veins are basically shot. Honestly? Just hearing her voice is enough for me. As long as I hear that, I'm good. She sounded strong today. This way of communicating is actually much better—she reaches out when she actually has the energy. Last time, I almost lost it and caused a scene at the hospital because I called her right while she was receiving blood, and she felt so sick she sounded like she was dying. When my nurse explained that it was just "part of the procedure" and that Mom was going to be okay, I finally calmed down. Thanks for the support and the good vibes. It really means a lot and helps me keep going.

Dana Baker37, hang in there 🙂

My mom finished her last round of chemo today—she’s feeling so happy, and honestly, I am too... now we just have to hope everything comes back looking good 🙂

The doctors want to run a bunch of tests: a CT scan of the abdomen and pelvis, chest and heart X-rays, CEA, ALP, CBC, plus two different sets of blood work—biochemistry I and II

Some of these tests were ordered by the oncologist and some by the radiologist—they overlap quite a bit, obviously—so when she asked if she needed to see both specialists to go over the results, they told her she could just pick one... though if she has the extra time, she can always see both
Should we go to both doctors even if the results look okay? Just in case one of them misses something small?
And if she ends up choosing just one, would it be better to see the radiologist or an internist?
Just for context, she'd be seeing Chief Smith and Dr. Miller at the Mayo Clinic

One more thing... does anyone actually know what "biochemistry I" and "biochemistry II" refers to? 😕

Maria Fox said:Dana Baker37, hang in there 🙂

My mom finished her chemo sessions today. She’s happy, I’m relieved. Now we just have to hope for good news down the road. 🙂

thanks Maria Fox 🙂
So glad to hear about your mom—and you too. Keeping you both in my thoughts for what comes next. 👍
I'm having a good day myself because they cleared me to visit my mom (heading there tomorrow). It’ll be pretty brief, but whatever. Just enough to see her and drop off some essentials. Honestly though, I have to give credit to the doctors and the staff at Mercury Hospital. They really look after her and stay on top of everything. 👍
Best to everyone!