Resources and support for families dealing with cancer and serious illness

Linda Peterson37 said:I’ve been lurking here for quite some time, reading through everyone’s posts, and I have finally gathered enough courage to contribute a few words of my own...
My family and I are also currently fighting a battle against a tumor—specifically, my father’s recurrent brain tumor. He first underwent surgery for it back in 1999, only for his follow-up MR scan in December 2006 to reveal that the tumor had returned. Because of the specific treatments he received in 1999, conventional chemotherapy or radiation simply weren't options anymore, and surgery was out of the question too, so we turned toward alternative methods. Regardless of what anyone might think about such paths, I can say from our direct experience that they truly helped my father; in fact, when we looked at his November 2007 MR, compared to the previous results from a year prior, the tumor hadn't spread or grown at all. I don't even need to explain how much that single finding meant to us...
Still, there are days when my father feels significantly worse than others, and he is never, ever alone for even a single minute. Someone is always by his side, and occasionally—though certainly not always—we have to step in to assist him with meals or other basic needs...
I want to thank Angela Wright for starting this thread, because the truth is, those who haven't walked this path cannot possibly understand, no matter how much goodwill they may have.

Unfortunately, it is impossible for anyone to truly grasp this unless they wake up every morning gripped by fear and a desperate, driving will to live...

I am so relieved to hear that an alternative approach helped stabilize the tumor! Just stay brave and keep moving forward... kisses

Linda Peterson37 said:He has an astrocytoma, which is the kind of tumor that tends to relapse more than most.
After the initial gut punch back in December 2006—finding out the tumor was back—it actually gave me this surge of determination to find anything and everything that might help my dad. After endless hours of scouring the web, talking to cancer survivors, and digging through books, we started him on macrobiotics.
Michia Kushia’s book about using nutrition to fight cancer and leukemia was a huge help to us. Unfortunately, Dad couldn't stick with macrobiotics for more than six months; he was constantly complaining about the food, and since we weren't by his side 24/7, we couldn't monitor every single bite, so he’d end up eating things he shouldn't have. Beyond the diet, he started using a Rife machine—a device that uses specific electrical frequencies tailored to combat different illnesses—along with a variety of immune-boosting supplements.
I recently heard that holly extracts are really effective, so I'm wondering if anyone here has experience with those, or maybe shark cartilage capsules? I've heard that helps too, so if anyone knows anything...

Regarding the Rifer machine, I know slyseal28's husband used it, and he's a true believer who swears by it.
As for shark cartilage, I've also heard it works wonders against tumors. The idea is that sharks are one of the few animals that seemingly don't get cancer, supposedly because of something found in their cartilage.
Please, if you don't mind, sign up for the association's website (just click my signature below). slyseal28 wrote about the Rifer machine over there, and honestly, we need as many stories as possible in one place so people can actually find reliable information.

Hello, everyone.

I just wanted to say how incredible the work being done on this subforum is; you truly deserve all the praise. I stumbled upon this community by chance about a month ago, and I’ve been impressed ever since. It has taken me some time to gather the courage to finally post a few words.
My father lost his eight-year battle with multiple myeloma three months ago. There were so many times when neither my mother nor I could talk to our close friends about it, simply because they couldn't understand—only those who have lived through it can. We had no one to provide reliable information; we were essentially stumbling in the dark and just pushing forward. I spent my time reading medical texts, scouring the internet, and chasing down doctors. I am relieved to see that there is finally a dedicated website available with all the necessary information regarding myeloma.
We had to learn everything the hard way. This disease is brutal, but if I can assist anyone through advice, shared experience, or even just psychological support—which is ultimately what everyone needs most—I will gladly do so. A person facing illness requires every possible form of assistance and support.

Stay strong, everyone. Don't let this break you. There are many of us who understand exactly what you are going through, and you are not alone. Take it one day at a time. Even knowing his condition was incurable, my father never once faltered; he possessed an incredible faith and a profound will to live. Keep fighting. I wish you all strength and success. 👍

redharbor23 said:Hi everyone.

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

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

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

Hi there.

My dad has been battling sinus carcinoma for about a year now. Honestly, most people reading this probably haven't even heard of this specific type of cancer. That was my first reaction too—sinus cancer? Does that even exist?
Unfortunately, it does.
It’s nearly impossible to spot early on because there aren't any obvious outward symptoms. It just mimics chronic sinusitis.
So, these supposed "infections" dragged on for years. An antibiotic here, another one there, nasal swabs, more antibiotics, endless bottles of nasal sprays... It went on like that until, after months of sleep deprivation caused by a constantly blocked nose, my dad finally went to see an ENT specialist at a major hospital in Chicago to discuss surgery.
That’s when we got the truth: he has nasopharyngeal carcinoma. It had already progressed so much that it caused bone destruction in the skull and filled all his sinuses. The prognosis was grim. They prescribed the most aggressive therapy possible—I’ve lost track of how many rounds of chemo and radiation they scheduled. His doctor actually told us that, in his experience, only one patient had ever survived that specific regimen.
But, thank God, we made it through the treatments. It was an agonizing process, but we endured.
After three months, the CT scan showed the treatments had done their job; the tumor had shriveled as much as it could. It’s still there, but it's significantly smaller. We were set for a follow-up CT in six months...
That milestone date was January 15th of this year. We got the results back from the doctor yesterday...
The CT shows a new mass that wasn't visible on the previous scan. Naturally, the doctors don't know what it is yet, but they've scheduled a surgery—specifically a biopsy that has to be performed under general anesthesia because the location is so difficult to reach.
This news hit me incredibly hard... So, I decided to reach out to this group, knowing you all might understand.
If anyone here has dealt with this specific type of carcinoma, please, if you have any wisdom or advice to share, let me know. If not, just keep us in your thoughts. If the biopsy shows the worst-case scenario, I honestly don't know how we'll find the strength to face more treatment...

@Amanda Nelson54/">@@Amanda Nelson54

I was aware this specific type of cancer existed, but honestly, I haven't heard a single real-life account of it until today.
Even if this turns out to be the worst-case scenario, your dad is going to fight, and you all will be right there backing him up, no matter how much it hurts. Don't let fear take over; fear just feeds the darkness of this whole situation. The fight continues!

This news hit me so hard... So I decided to open up to this group because I know you all will understand...
"If anyone has experience with this type of cancer, maybe you have some wise advice... please reach out! If not, just keep your fingers crossed for us, because if the results show the worst, I don't know how we'll handle more treatments..."

SUNFLOWER

Sadly, I don't have any expert advice to give. All I can do is cross my fingers and hope the results aren't the worst-case scenario. You already know that with any kind of cancer, anything can happen. It's just human nature to jump to the darkest thoughts when we're scared, but it doesn't always turn out that way! Let's really hope that's not the case for you...
I know waiting for biopsy results is agonizing, but right now, there's nothing to do but hope for good news—or at least hope it isn't the absolute worst!
Hang in there... 👍👍👍

redharbor23 said:Hello, everyone.

I simply wanted to express how wonderful the work being done on this subforum truly is; it deserves nothing short of immense praise. I stumbled upon this community quite by chance about a month ago, and I have been so impressed that I’ve been slowly gathering the courage to finally contribute a few words...
To be honest, my father lost his eight-year battle with multiple myeloma just three months ago. There were so many times when neither my mother nor I felt we could even talk to our close friends about it, because, unfortunately, this is something only those who have walked this path can truly grasp. We had no one to turn to for information, so we were essentially stumbling through the dark... I spent my time devouring medical texts, scouring the internet, and constantly chasing down doctors. I am relieved to see that there is finally an American website available with all the necessary information regarding myeloma...
We certainly had to learn everything the hard way—this disease is anything but easy—but if I can offer anyone some advice, share my experience, or even just provide a bit of psychological support (which, ultimately, is what everyone needs most), I will do so gladly. A person facing illness requires every possible ounce of assistance and encouragement...

Stay brave, everyone; don't let this get you down. There are many of us here who understand exactly what you are going through, and you are not alone. Just take it one day at a time. My father never once faltered, even knowing his condition was incurable, because he possessed such incredible faith and a profound will to live. Keep fighting, and I wish you all much success and strength... 👍

Greetings to you as well, redharbor23...

Thank you for this post and for the support you've offered. It is truly heartening to hear from someone who understands and knows exactly what you are enduring...

On this subforum, one finds stories and advice that encourage you to keep believing. For me, it helps every single day, providing answers to questions I have no one else to ask... We are all fighters here, full of faith...

kisses

Hi everyone!

So, I just got some news from Germany—before the first injection, they ran a PET/CT scan to get a baseline of everything, and we actually got the results back about half an hour ago.

There was some "activity" showing up in two spots: at the surgical scar on the lower leg (where the surgeons already told us they couldn't get everything out, so that’s expected) and in the groin area, which was also operated on; interestingly, the pathology report from three months ago showed that area was completely clear.

Now, since the very first PET/CT also picked up some nodes that turned out to be totally clean on pathology, I’m not taking this result as absolute gospel, though it's pretty clear there's a strong chance this is the actual reality of things.

Part of me is incredibly relieved and happy because all his other organs still look clean, with no signs of metastasis. On the flip side, I'm a little worried because there's the possibility that some of the tumor survived the surgery in the groin and is continuing to spread.

Then again, he hasn't even received his first dose of DCvax yet, and it wouldn't have been realistic to expect any kind of spontaneous remission or anything like that quite this early...

I honestly don't know whether I should be celebrating or feeling depressed. Regardless, the fight continues, and we’re looking forward to winning the next round.

Also, someone asked how we ended up coming all the way to Germany—on my own initiative, I tracked down the doctor's address online and sent him an email, and he responded the very same day, so that's how this whole journey started.

Sending love to all my fellow warriors, and I'm wishing us all plenty of strength for the battles ahead!

Elizabeth Gonzalez55 said:Hello!

I just received some updates from Germany—before the very first injection, they performed a PET/CT scan to establish a baseline, and the results came back just half an hour ago.

There was some "activity" showing up in two spots: at the surgical scar on the lower leg (where the surgeons already admitted they didn't manage to get everything out, so this was expected) and in the groin area, which also underwent surgery, though the pathology report from three months ago showed nothing there...

Now, since the initial PET/CT also picked up some nodes that ultimately turned out to be completely clear on pathology, I’m not taking this finding at face value, but it is quite evident that there is a significant possibility this reflects the actual situation.

I am relieved, certainly, because all the other organs still appear clean, with no signs of metastasis. On the flip side, there is a lingering worry that perhaps some of the tumor survived the surgery in the groin and is continuing to spread...

Then again, he hasn't even received his first dose of DCvax yet, and it wouldn't have been particularly realistic to expect any kind of spontaneous remission or anything of the sort just yet...

I'm honestly not sure whether to celebrate or descend into despair... Regardless, the fight continues, and we are anticipating a win in the next round.

By the way, someone asked how we ended up in Germany—personally, I tracked down the doctor's address online and sent him an email; he replied the very same day, and that's how it all began.

Sending strength to all my fellow fighters; I hope we all find the energy needed for the battles ahead!

Don't let yourself slip into depression, nor should you lose yourself in pure celebration; try to remain an optimist and keep the faith. Believe, just as you wrote yourself: the fight goes on! Just stay brave and persistent... You're already winning this round—just keep pushing toward that final victory! kisses

Elizabeth Gonzalez55 said:Hey there!

I’m stuck... should I be celebrating or just spiraling into a depression? Either way, the fight continues, and we're looking for a win in the next round.

Don't do either. Just stay grateful that you still have the chance to keep fighting.

Elizabeth Gonzalez55 said:Hi there!

So, I just got some updates from Germany—right before the first injection, they did a PET/CT to get a baseline, and we just got the results back half an hour ago!

There was some "activity" in two spots—one at the surgical scar on the lower leg (where the surgeons already told us they didn't get everything, so that’s expected) and in the groin area, which was also operated on, and the pathology report from three months ago was totally clear there.

Now, since the very first PET/CT also showed some nodes that turned out to be completely clean on pathology, I’m not taking this result as gospel, but it's pretty clear there's a huge chance this reflects the actual situation.

I'm so happy and relieved that all the other organs are still clear, no metastases! But on the flip side, I'm a little worried because there's a possibility the tumor survived the surgery in the groin and is still spreading.

Then again, he hasn't even had his first DCvax shot yet, and it wasn't exactly realistic to expect any spontaneous remission or anything like that...

I don't know... should I be celebrating or feeling down? Either way, the fight goes on, and we're looking for a win in the next round!

Oh, and someone asked how we ended up in Germany—personally, I just dug up the doctor's address online, sent him an email, and he replied the very same day, so that's how it all started.

Sending love to all my fellow warriors, and wishing us all tons of energy for the battles ahead!

Oh honey, you have every right to be happy that all the organs are clear. That is such good news!
You're a smart, grounded woman, and with a disease like this, you can never let your guard down.
Like you said, the results are pretty much what you were expecting, and that change in the groin doesn't necessarily mean a pathological change, just like you noted!
For now, the most important thing is knowing it hasn't spread anywhere else—it could have gone that way, right?
Now it's time for DCvax, and we're crossing our fingers👍 that it does its magic!
We're right here with you.

Linda Peterson37 said:He has an astrocytoma, a type of tumor notorious for recurring.
After the initial shock hit us in December 2006 when we realized the tumor had returned, it actually gave me a strange kind of resolve—a drive to scour the earth for anything that might help my father. After endless hours spent digging through the internet, talking to survivors who have beaten various cancers, and devouring books on the subject, Dad first turned to macrobiotics.
We found Michia Kushia’s book on diet-based cancer and leukemia treatments to be incredibly helpful. Unfortunately, Dad eventually threw in the towel on macrobiotics after six months; he was constantly complaining about the food, and since we couldn't hover over his plate every single second, he would inevitably slip up and eat things he shouldn't have. Beyond macrobiotics, he started using a Rife device—a machine that emits specific electrical frequencies tailored to combat different ailments—alongside a variety of immune-boosting supplements.
I recently heard that mistletoe extracts are highly effective, so I was wondering if anyone here has experience with them, or perhaps shark cartilage capsules? I've heard those can help too, so if anyone knows...

Regarding mistletoe extracts, my mother used them via injections.
The injections are called Iscador, though there is also Helixor; I believe they come in series 0, 1, and 2. My mother took Helixor based on her oncologist's recommendation. In places like Austria and Germany, this is considered standard practice alongside chemotherapy. It acts as an immunostimulator, and its anti-carcinogenic properties are well-documented.
One caveat: you shouldn't administer the injections if there is active bleeding or a fever. After finishing a box, you take a one-week break, and if you are on series 2, you wait two weeks. As a precaution, it's best not to give them within at least 48 hours of a chemotherapy session. Each box contains seven injections, which are administered in sequence (they are numbered accordingly). A typical reaction is some redness and swelling at the site, which is perfectly normal, provided the reaction isn't excessive. If the reaction is too intense, you should halve the dose—essentially putting half the contents in one syringe for the injection, then filling a second syringe with the remaining half, placing it in the refrigerator, and using it two days later. Aside from that, there aren't many side effects; at least, my mother didn't experience any. I still have a few boxes at home that we picked up in Vienna, so if you need them, I'd be more than happy to give them to you.

Linda Campbell, that would be amazing and truly kind of you! Just let me know how we can get in touch...
We picked up some shark cartilage capsules in Chicago today, and as soon as they arrive tonight, Dad's going to start taking them.
But unfortunately, Dad's condition has taken a turn for the worse all of a sudden... he was doing great for a long time, almost like he wasn't even sick, and then out of nowhere he loses feeling in his left arm, then his speech gets difficult, and then after two days it stabilizes into him being unable to stand... I don't know... honestly, I'm desperate!
Desperate!
He was doing so well, no problems or issues at all, and now.... I hope and believe the shark cartilage will help him...
I don't know what else to do..
Sometimes the sadness just overwhelms me—this immense sadness because I want to help him but I can't... anger, despair, helplessness, sadness, rage, and apathy toward everything else are constantly swirling together, and even though I know it doesn't help, I can't stop it...

@ Linda Peterson37 Check your PMs, I sent you a message.

Angela Wright said:Regarding Rifer, I know slyseal28's husband used it; he’s a huge believer and swears it really helped him out.
I've also heard shark cartilage works wonders on tumors. Apparently, sharks are one of the few animals that just don't get cancer, and people assume it's because of something specific inside their cartilage.
Do me a huge favor—if you don't mind, go ahead and log onto the association's website (just click my signature below). slyseal28 posted about Rifer over there, and honestly, we need as many stories as possible so people can find everything they need in one spot.

And goats don't get cancer either, plus transplanted cancer cells can't even survive in their systems!

Linda Peterson37 said:Linda Campbell, that would be absolutely wonderful and truly kind of you! Just let me know how we might get in touch...
We picked up some shark cartilage capsules in Chicago today, and as soon as they arrive this evening, Dad is going to start taking them.
But, unfortunately, Dad’s condition has taken a turn for the worse, and it all happened so suddenly... he was doing well for such a long time, almost as if he weren't even sick, and then all at once he can't feel his left arm, then his speech becomes difficult, and after two days, it stabilizes into him being unable to stand... I don't know... honestly, I am desperate!
Desperate!
He had been feeling so good, without any issues or discomfort, and now.... I hope and believe that the shark cartilage will help him...
I just don't know what else we can do..
Sometimes sadness just overwhelms me, an immense sadness because I want to help him so badly and yet I can't... anger, despair, helplessness, sorrow, rage, and apathy toward everything else constantly swirl together, and even though I know it doesn't help, I simply cannot change it...

Once again, my comment has vanished into the void of this virtual world.

Do not let the sadness consume you or make you feel powerless. Every time the weight settles on your mind and the tears begin to fall... just stop for a moment and breathe, and remember how much you are doing for your father and how much he needs you to stay composed. My brother would tell you right now: "There is nothing to be gained from tears; they only weigh you down and help no one. Smile and find some humor. Find a way to make him laugh, and it will be easier for both of you."

Stay strong, and I truly hope the shark cartilage provides some relief.

kisses

cosmicsailor91 said:Even goats don't get cancer, and if you try to transplant cancer cells into them, they just don't survive in their system!

Oh, really😲? I'll go ahead and Google that one🙂.

Don't let the sadness take over or start thinking you're helpless. Every single time those heavy thoughts hit and the tears start coming... just stop for a second and breathe. Think about everything you're doing for your dad and how much he needs you to stay composed. My brother would tell you right now: "There's no good in crying; it just weighs you down and doesn't help anyone. Smile and find some humor. Find a way to make him laugh, and it'll be easier for both of you."

Stay strong. I really hope that shark cartilage helps.

Thanks so much!

Hi everyone,

I’m just checking in today because I wanted to share some of my current thoughts and how I’ve been feeling lately.

I’ve been spending a lot of time following the American forums for melanoma survivors, and every single day, you see people popping up who have fought through this—people who managed to pull through and are living 5, 7, 10, 16, 28, or even 35 years after receiving the most terrifying diagnoses imaginable. If I didn't take the time to read all those individual stories and life journeys, I might actually start thinking that everything is lost and that hope has run out.

In a way that might sound a bit masochistic, I’m almost glad that we were hit with melanoma specifically, since it's the kind of cancer that can't just be tackled with standard chemotherapy or radiation, leaving us to rely heavily on our faith and our hope.

So, to everyone reading this: keep believing, keep hoping, and please, don't you dare give up or falter. Don't let the opinions of people in white coats get to you when they tell you it's over, because honestly, they have no way of truly knowing what lies ahead. When I first joined this forum, Angela Wright told me something so many times that it became an absolute truth for me: no matter what happens, do not be afraid. Fear only feeds the beast and gives it strength. Because no matter how difficult things get, these are precious moments where we can fully commit ourselves to our loved ones and pour all that necessary positive energy into them.

So, my fellow fighters, keep your heads up and stay brave. I am convinced that one day soon, a cure will be found, and we will end up being the pioneers of a whole new era in human history. Until then, we still have plenty of work to do—I don't know about you, but I’ve already got my application and paperwork ready, along with the determination to get involved with the New Day Association, and I really hope we’ll all be able to meet there together very soon. :-)