Support resources for families dealing with cancer and other serious illnesses

I can't help but notice lately how certain people show up here, making their very first post by mentioning they've been lurking and reading our stories for ages, finally deciding it was time to actually say something...

Look, I have to say how much I appreciate those who finally step up and share their journeys. At the same time, I’m genuinely puzzled by the massive crowd of people who just watch us from the sidelines without ever saying a word—honestly, there are way more lurkers than there are active posters. I get it, opening up about your life isn't easy. But you have to understand: when you're battling diseases this heavy—battles where it feels like you're fighting with your hands tied behind your back—the flow of information is vital. We need to connect, to realize we aren't alone, and to prove that you can still fight even when life hits you this hard.

I started this thread (and later worked with others to support an association pushing for real systemic changes for cancer patients) because I felt a profound obligation to everyone else walking the path I’ve had to tread. I wanted to pass on the lessons I had to learn through sheer, agonizing struggle, hoping to spare others from the unnecessary suffering and mistakes that only deepen the pain.
What I’m really trying to drive home is this: don't be the dead end in the chain. Don't be the person who receives information, support, or a bit of positive energy and just keeps it to themselves. The whole point is to pass it on. That's how knowledge becomes bigger and more powerful than cancer itself. Plus, there's a deep sense of purpose in knowing that what's happening to you can actually mean something for someone else. Okay, look, you don't *have* to post here. Not everyone is a natural writer. But please, don't just sit there being passive and inert; if everyone does that, the entire purpose of a community like this vanishes.
What you choose to do with what you learn, and how you pass it forward, is entirely up to you. There's always enough time—we usually just waste it on things that don't matter anyway.

Angela Wright said:...It’s funny how people just keep forwarding things, thinking that by spreading the word they make it bigger and more powerful than cancer itself. It gives them this little sense of personal satisfaction, a feeling that whatever is happening to someone else—someone they know—actually matters...

And that’s exactly how change starts... Sending love your way!

In that spirit, we are calling on everyone to join our final push to collect signatures for the petition regarding expensive medication costs!

The American Medical Association, along with our own association, "For a New Day," will be hosting a final signature drive from December 15th to the 21st at the Mall of America. We are fighting for high-quality treatment for chronic, severe, and rare diseases based on specialist recommendations, fully covered by Medicare.

Throughout the coming week, various participating organizations will be highlighting their specific goals and activities. This includes the "Sanus" group—a support network for parents of children battling cancer—as well as the American Heart Association, the United Spinal Association, the Rain Man foundation, the American Diabetes Association, the local Cancer League, the "All for Her" association for women fighting breast cancer and their families, and our very own "For a New Day."

Visitors can contribute either by signing the petition or by purchasing specific products, where all proceeds will go directly toward supporting these associations.

To keep spirits high, the whole thing will be packed with entertainment featuring several well-known names, such as Luka Nižetić, Vlatka Pokos, the Meritas group, Jelene Radan, Ivana Kindl, Antonija Šol, Remi, and many others, alongside concerts from popular bands. You can check out the full event schedule here.

This petition drive originally kicked off back in July under the initiative of our association, "For a New Day." So far, we’ve gathered over 15,000 signatures—we’re actually closing in on 20,000 now—and this is the final phase before we take these citizen demands and hand them over to the Department of Health and Human Services and Medicare.

The campaign is running under the motto "Together for a Healthier Tomorrow," because a healthier future belongs to every citizen in the US. Beyond that, this week-long effort is meant to spark civic activism and demonstrate what grassroots initiatives can actually achieve. It’s about proving that through collective action, we can improve our lives and work together to force the changes necessary for better healthcare.

casualrider21 said:Look, identifying the exact focal point is crucial so they can target the chemotherapy precisely at that site. If they can't pinpoint the primary tumor, they usually opt for systemic chemotherapy, which essentially takes aim at the entire body.

Dad hasn't been in much pain, but when it does hit, it hits hard. He’s on a regular schedule of tablets and injections that seem to be keeping the agony at bay. He’s actually been stuck in the hospital for a month now for IV fluids and various treatments. He went nearly twenty days without eating anything, which left him incredibly weak and dehydrated—he couldn't even stand up. We're finally getting him up to take a few steps around the room, and he's started eating again.

Just remember, with a disease like this, you have to take it one day at a time. His condition fluctuates wildly; one day he’s upright and fighting, and the next he's completely wiped out. It’s a constant cycle. If things fall apart today, it doesn't mean they won't improve tomorrow or the day after. So, don't lose heart. Just take it slow.

But I certainly haven't given up on looking into alternative options alongside conventional medicine.
You didn't mention where the suspicious areas are (the metastases?) or if he's lost his appetite. Is he back home now or still in the hospital? Where exactly is the pain located?

Please, feel free to keep posting; I'll try to help however I can. This whole heartbreaking situation has forced me to learn more in a single month than some doctors do in years.
Hang in there! I'm here!

Thanks, casualrider21,

They finally discharged Dad from the hospital in Jordan two days ago.
There was some suspicion regarding lung cancer, but after I kept pushing for answers, the doctor suggested that his lungs actually look fine.
I honestly can't wrap my head around why it's such an uphill battle to get straight answers from doctors.

About ten days ago, he underwent a biopsy to remove a 5 cm growth on his chest wall, which was sent off to the lab for analysis. They still aren't sure if it's a primary tumor or a metastasis.
He's experiencing back pain, though it isn't localized to one spot—it just seems to migrate.

So, we're back home now, just waiting on those biopsy results to figure out our next move. It feels like this waiting period is dragging on forever.

casualrider21 said:Does anyone happen to have experience using those KANCIST drops?

Hey there.

My husband went through three bottles. We actually drove out to St. Louis just to meet the man who makes them in person. He seemed decent enough—didn't make any wild promises. His take was pretty blunt: some people respond, some don't. According to him, you should see results after about three bottles, so he isn't trying to trap you into buying them forever. He even gave us one of those three bottles for free.
Unfortunately, the lung scans (my husband has small cell lung cancer) showed no real movement, so we stopped the drops. However, we kept up with our usual regimen: Beta Glucan 1,3 D (he hasn't missed a dose in 15 months), Noni, beet juice, and various vitamins from time to time. For the most part, his blood work has remained excellent. That said, we've learned firsthand that blood counts aren't always the ultimate indicator of how the body is handling a primary disease. 😢 Still, we're just glad that at least some things are holding steady. 🙂

Hey everyone, I’m honestly at my wit's end here. 😢
My dad has started acting completely out of character. He's rambling on, pointing fingers at his doctor, and convinced that his medication is messing him up. Now he's flat-out refusing his treatment...
Two days ago, he was totally fine. Just normal.

Does anyone here actually know what the side effects for Kaplan are?

He just had an MRI of his brain about two weeks ago, and everything came back perfectly clean.
Is it even possible for things to spiral that fast, or am I looking at some crazy drug reaction? Or what else could this be???

😢

casualrider21,
I don't really have any firsthand experience with this—so I'm just hoping maybe someone else here has been through it and can offer you some guidance.
All I can really do is hope and wish that things pass quickly for you...

mistyridge5 said:casualrider21,
I honestly don't have any firsthand experience with that—I'm just hoping someone here might have some insight that could help you out.
The best I can do is keep my fingers crossed and wish you all the very best... hope it passes quickly...

First off, I want to send my best wishes to everyone here—wishing you all strength and success in your healing journeys.
I actually have a question for the group—has anyone here used any of those supplements from Dr. Myko san? They focus on mushroom-based wellness, and the company is based out of Chicago.
Thanks in advance for any info!

Ivanicapeca,

I think I completely understand where you're coming from.

But, if I may, I’d like to offer a perspective for those on "the other side" of this conversation as well.
If I recall correctly, I first posted here almost a year ago.
Back then, I was struggling with so much anxiety and bitterness because of everything my mother was going through.
It is actually quite difficult to stay silent for so long—especially since, at the time, I didn't really have a place to talk about it—and now, trying to begin... well, it's hard to know where the beginning is, where the end lies, or even what constitutes the middle part...

I only had my own feelings and memories to lean on—some were worse, some were better, I suppose.

I am truly glad that this thread was started, and even more so that an association has been formed; I've lost count of how many times I've wished something like this existed a few years ago.

I believe my life might have been a bit "easier"—meaning, I would have had a way to vent—and perhaps I could have lived a bit more "healthily."

I say this for everyone who is lurking here, too—those who might not yet feel they have the strength to speak up, to admit anything, or to share their stories.

I honestly thought the whole saga regarding cancer was over, until it hit me again. It struck close to home, affecting someone dear to me once more...
And sometimes, I must admit, it is difficult to face new stories like this, but I know—and I truly believe—that by speaking out, through verbal support first and then tangible help, we can make a difference for others who are still staying silent among us.

It might be a sad reality, but cancer is a constant presence in so many lives today, and I feel we should strive to provide adequate support to those fighting it, as well as to their families and friends.

These pages have helped me confront some of my own fears, let go of the bitterness and anger, and try to transform all that pain and sadness into something constructive—something for a better tomorrow...

Michelle Kern54 said:Watching this video above has left me completely speechless.👍
There is so much abundance available, yet so many people let it slip through their fingers—including myself, since I’ve been stuck in this endless cycle of eating nothing but fruits and vegetables.

Dear Rinaf,
It isn't strictly about whether you are consuming fruit and vegetables or not.
The real key lies in the unprocessed state of your food—meaning it needs to be raw (at least 80% of the time).
And it isn't limited to just produce; you should also look into nuts, grains, and legumes (though those can be lightly steamed).
Do you happen to own the Fit for Life cookbook?
If not, I would be happy to mail you a photocopy if you are interested in pursuing this style of nutrition.
Here is another excellent cookbook (unfortunately it is in Mexican), but I suggest focusing on recipes that utilize as many raw ingredients as possible.
Best wishes, stay strong.
PS
Ps Loraine day, take a moment to sit down with some paper and a pen, write down everything she practically suggests, and stick to that plan with the unwavering determination of a seasoned politician.
Success is waiting there.
Everything is simply too straightforward for the masses to actually believe, but the method works 100% of the time.

casualrider21 As if anyone actually cares what they have to say?

Does anyone happen to be aware of the potential side effects associated with Kaplan?

Perhaps you should consult a pharmacist instead. They often possess a much more thorough and practical understanding of how a medication actually functions than doctors do, don't they?

Has anyone actually tried using products from Dr. Myko san before? I’m feeling a bit hesitant here—has anyone else had experience with them? I’d really appreciate some honest feedback so I don't end up throwing money down the drain... we've already spent quite a bit on this journey, and I'd love to avoid any more wasted effort. Sending my best to everyone, and please, stay strong with your treatments!

I am unsure how much value I have provided, but I felt a need to share this with you all. I wish healing for everyone here, and for your loved ones as well.

You were certainly helpful. Thank you for reaching out and sharing this information with me and the rest of the group. It is important to know everything and to read and consider every piece of advice.
Much of your post radiates optimism and hope. I find myself needing that right now to gather more strength and to continue trying to help him.
To be honest, I haven't found many accounts from people dealing with melanoma, aside from the most tragic stories. It seems few people choose to share their journey toward recovery with others. Perhaps that isn't surprising, given the nature of this diagnosis.
Thank you once again. I wish you the best.

casualrider21 said:Do you happen to know if anyone has tried those KANCIST drops?

Hello.

I read about one man with lung cancer who managed to recover. There aren't many other reports. On the other hand, some people believe it is just straight-up propaganda. I am not particularly bright. I will think on it and let you know what we decide.

Angela Wright said:I can't help but notice lately how certain people join the forum by mentioning they've been reading our posts for ages and finding them helpful, finally deciding it's time to speak up...

I feel compelled to say how glad I am that people are finally sharing their stories. At the same time, I find it strange how many people read us without ever saying a word; there are far more silent observers than active writers. I understand that opening up isn't easy. However, when dealing with such devastating illnesses—where we often feel our hands are tied—it is vital that information flows and that people connect. We need to know we aren't alone and that fighting is still possible.

I started this thread (and later worked with others to form an association that pushes for real changes for cancer patients) because I felt a duty to those who have been or will be in my position. I wanted to provide the insights I had to learn through immense struggle, hoping to spare others from unnecessary suffering.
What I mean to say is: please do not be the final link in the chain. If you receive information, support, or positive energy, do not just hold onto it. Pass it on. That is how things grow larger and more powerful than cancer itself. It also brings a sense of purpose to see how what happens to one person can benefit another. You don't have to write here if you aren't comfortable. Not everyone is a writer. But please, do not remain passive, or the entire purpose of a community like this is lost.
What you choose to pass forward is entirely up to you. There is always time; we mostly just waste it on trivialities.

I agree, and I commit to posting. You hit the nail on the head. Opening up was difficult for me. Anything I learn that might help, I will share here, though everyone must make their own decisions.

Anthony Rodriguez9 said:Is it possible nobody else here has tried Dr. Myko san's products? If anyone has, please help me out. I don't want to make a mistake with this purchase, especially since we have already spent so much. Best wishes to everyone, and stay strong with your treatments.

We have no experience there. Only with Immunomax capsules, as I mentioned before. In my opinion, they were quite beneficial.

Well... everything looks perfect. All the tests came back clean, the check-ups are done, and I’ve finally had six months of peace. Heh. My oncologist actually looked at me and said, "Listen, kid, people come and go, but you? You've been sticking around us for nine years now." Honestly, everyone, just keep smiling 🙂 and have faith that things are going to get better. Because they will be 🙂

@Anthony Rodriguez9/">@@Anthony Rodriguez9 I don't personally know anyone, but I've heard plenty of stories about mushroom and algae diets working wonders. A colleague’s aunt was basically given a 0.025% chance of surviving cervical cancer, and yet here she is, still kicking twelve years later.
Everyone's body is wired differently, and people react uniquely even when they have the exact same diagnosis. Just do everything you possibly can. Good luck!

@slyjackal38/">@@slyjackal38 Thnx, definitely keep me posted. Hang in there!

@Grace Stewart6/">@@Grace Stewart6 I'm going to schedule a sit-down with my doctor and grill them with questions. Hopefully, I actually get some straight answers out of them.
Keep me updated on how things are going on your end.

@Olivia Miller/">@@Olivia Miller Thank God! I'm so glad to hear someone is seeing progress!
Let's keep pushing!

Later, everyone...

I just finished a consultation with an oncologist in Chicago, the same one we visited last year. Her assessment was that his primary doctor followed every standard protocol to the letter. It wasn't particularly comforting to hear her say their hands are tied. It feels as though they have essentially given up on him. She also mentioned there is no certainty regarding any benefit from taking Nolvadex orally for melanoma.
It seems our only remaining path is to explore alternatives—to try things we haven't attempted yet.
Has anyone here had any experience with aloe vera or noni? I am looking specifically for positive accounts.

My mother passed away five days ago... the doctors were right about everything.
It’s a small comfort knowing she didn't have to suffer through intense pain.
I want to thank everyone for the kind words of support. Unfortunately, her cancer had progressed too far; even though she was a fighter her entire life, she just didn't get the chance to fight this one.
To everyone currently in the ring: I wish you all the luck and strength in the world. Fight this monster—do it for yourselves, for your loved ones, and for those who weren't given a fighting chance.

Anthony Rodriguez9 said:First off, I want to wish you all the best with your treatments.
I have one question for everyone: does anyone have experience with Dr. Myko san's products? They focus on mushroom-based health and the company is based out of Chicago.
Regards and thanks in advance.

Dear Anthony Rodriguez9,
Sorry for the late reply; I had some personal issues come up and couldn't get to this immediately. My wife and I have been using products from Myko san. Her diagnosis—a malignant brain tumor, specifically glioblastoma—was on September 3, 2006, and she underwent surgery four days after the diagnosis. Right after she was discharged from the hospital following the operation, I contacted Myko san based on a recommendation from a close friend. I sent them her discharge papers and diagnosis, and we started therapy with Agarikon and Lentif immediately. This was all before radiation and chemotherapy began. She is still taking them today, 27 months after the initial diagnosis.
Per the recommendation, for the first 80 days, she took 0.75L of Lentif and 0.3L of Agarikon daily. After that, she moved to cycles:
- 30 days: 0.3L Agarikon daily
- 10 days: 0.75L Lentif and 0.3L Agarikon daily
After the first year, she takes a double dose of Agarikon in cycles every three months for 10 days.
Looking back at everything we’ve navigated over the last 27 months, I can tell you that in my wife's case, these mushroom extracts are something that can be taken alongside both radiation and chemotherapy. Their purpose is to bolster the body's immune system, and they also possess the ability to slow tumor growth. I've read several English-language studies regarding the effects of PSK, beta 1.3, and 16 glucans from mushrooms, and these properties are noted everywhere. These substances have been used for many years in China and Japan.
Of course, since mushroom extracts haven't undergone rigorous medical trials and oversight, they cannot be classified as official medicine.
The price for these mushroom preparations is certainly not cheap, but the people at Myko san have always been willing to adjust the dosages based on financial circumstances to ensure we still receive an effective amount. Regardless, these supplements cost us quite a bit, especially during that first year. But I can honestly say I don't regret spending a single cent when I see that my wife is a completely normal woman again. Along with the mushrooms, she takes dozens of other supplements, so I can't claim with absolute certainty that the mushroom extracts alone are responsible for her excellent condition, but I firmly believe they made a massive contribution.
From our experience, taking mushroom extracts and other supplements does not interfere with the official medical protocol at all. On the contrary, it complements it.
Because of all this, I can tell you to feel free to contact Myko san without hesitation. Based on your test results, they will recommend specific types and dosages.
As long as your finances allow for it, take what they recommend, follow their advice, and believe that it will help. Just as we believe it is helping us.
Best regards, and hang in there.