Resources and support for families dealing with cancer and serious illness

Grace Fowler said:Hi!
I just wanted to chime in and say that throughout my own long years of battling this "monster," I’ve seen the best results using homeopathic products—specifically, Dr. Soltysek was a massive help to me. On top of that, I recently returned from Germany after finishing immunotherapy, which worked wonders; my immune profile is completely stabilized, and I have an operation scheduled for January 3rd, 2007, to finally finish this monster off once and for all.
Best, Grace

Man, that is fantastic news. 😍 It feels like I'm getting nothing but good news all day today.👍

Grace Fowler...... terrible news, Nancy Hernandez43!!!!!!!!!!!!!!!!!!!🙏 🙏 👍 😉

Wishing you all a pleasant holiday season—hope it's full of health, love, and peace. May 2008 bring you everything you're looking for.

I, too, find myself rejoicing alongside all of you over the good news from these past few days—truly, isn't it wonderful? 🙂 👍

Some seriously great news here. I’m really hoping this therapy turns out to be a massive success.
Hang in there!

[Thank you all so much for sharing your experiences with us. This has sparked so much interest, and hearing all this gives us so much hope!...
So please, keep updating us on everything you find out—don't hold back, we're soaking up every bit of info! This isn't about looking for alternatives, though I'm not against them; it's about finding concrete answers that matter to all of us.
What hits home for me most is how our own doctors and oncologists often aren't active partners in this fight. They don't always tell us about every option or what might actually help, even when they KNOW, just like in your example.
Then we're left to fend for ourselves, doing the best we can with what we know, but never quite as well as we could if they would just guide us—if they actually WANTED to or felt they were ALLOWED to?
It’s especially tough for those of us living in small towns. We don't have connections at the major hospitals in big cities where we get treated, so we end up less informed because our local doctors aren't always up to speed on the latest breakthroughs. It’s hard enough just getting referrals to the top-tier facilities in Washington, D.C., which are clearly the best equipped, but they rarely suggest a specific hospital or specialist for a certain type of cancer. So we end up searching, switching, and... mostly just wasting precious time that we simply don't have.
Because of all this, I’d love to see a list created based on your experiences—maybe a directory of hospitals or specialists for specific cancers who have truly gone above and beyond. In today's world, there's competition everywhere, and I don't think there's anything wrong with naming names. They aren't gods! We are fighting for our lives, and we have every right to demand they fight for us too—for the best care, the best treatments, and access to new clinical trials. It's common knowledge that here in the US, we still have so much work to do in the fight against cancer, and mortality rates can be higher than in many other places. Many doctors will surely be honored to see their names listed and will work even harder, while others might be nudged to step up and fight for us where it counts.
I'm confident our Association will work on this and focus on keeping everyone informed, hopefully alongside doctors who will join the cause. WE ARE SO PROUD OF YOU GUYS, no matter what you achieve!
As patients, we often lose hope and strength... we just get lost sometimes. That's why it means so much to see young, driven people stepping up with such passion, just like you. You truly... UNDERSTAND us!

I really agree with everything you said—we often find ourselves discussing how people living in rural areas, without reliable internet access and relying solely on local doctors, face much tougher battles, especially when they're also dealing with financial struggles. In a way, we were lucky that even amidst this nightmare, we had the resources to research our options and actually afford the treatment. However, I have to point out that even though we aren't from a major metro area, our local physicians played a massive role in our journey. To give you an idea, after the recurrence was confirmed via cytology, the oncologist at the Vinogradski clinic sent us straight toward scintigraphy and surgery, even though he knew a PET/CT scanner was arriving at his department in just a month. My goodness, he’s practically sharing an office with the program director, yet he didn't even suggest the scan as an option. It wasn't until a plastic surgeon in Cleveland mentioned reading about PET/CT scans in a medical journal that we were pointed toward Canada for testing. After returning from those scans, we did a scintigraphy that completely failed to show all the potential metastases that the PET/CT clearly indicated. The bottom line is this: if we had followed the oncologist's initial recommendation and gone straight to surgery without the PET/CT, there would have been no chance of removing all the metastases because we wouldn't have even known they were there. !!!!

Afterward, my gastroenterologist in Karlovac recommended we see Dr. Soltysek and provided us with his contact information. Honestly, if it hadn't been for her, I don't know if we ever would have found him, and as I mentioned, he walked us through every possibility, gave us contacts and recommendations, and advised us on our next steps. Most importantly, he was the first person to truly give us hope and tell us that something could still be done.

What I can promise is that I'll try to put together a brief summary regarding dendritic cell therapy for carcinoma.com, since no matter how hard I searched, I couldn't find anything useful written in American English about it. I also plan to post regular updates here regarding experiences from Germany and the latest results.

I believe everyone participating on this Forum is acutely aware of the systemic shortcomings within our healthcare system, and just how much of a difference our collective efforts might make... I want to extend my sincere gratitude to slyseal28 and Angela Wright for their immense dedication and for taking the initiative on this matter; we simply cannot afford to remain idle regarding your efforts.

We also come from small towns where resources are scarce—not just financially, but in terms of access to information... many parents don't even use the internet. For them, their only source of reliable information was a former school classmate who happens to be a doctor himself. If it weren't for him, they likely would have been left completely adrift...

And so... let us raise our voices so that we may all be heard!

Warm regards from San Diego!

Angela Wright said:Because this is such an incredibly brutal time—not just for those fighting the illness, but for their families and loved ones too—and because there's such a massive lack of real psychological support in our society, I decided to take matters into my own hands. Having gone through this nightmare myself, I started this forum so that we can look out for one another, offering advice and genuine support to anyone navigating these waters.

Please, feel free to share your story here. I promise I’ll always be here to reply, offer some guidance, or just stand by you. It's so hard, and sometimes being a caregiver or a bystander is even more exhausting than the fight itself.

I’ve been through hell personally, and honestly, I don't think anyone should ever have to endure this alone.

Sending huge hugs to everyone.

I am in a complete mess right now. I got stuck in a cycle of drug abuse, and I've been in outpatient treatment for a while now. But honestly? Being under medical supervision feels worse than when I was out on the streets using. I'm taking 18 heptanones, an antidepressant called CITALON, and a sedative called Prazine. Before that, along with the heptanones, I was taking ZAN to sleep and five 10mg tablets of Apaurin every single day. I used to stick mostly to heroin, but I finally decided to get help because I was terrified of catching HIV or Hepatitis. During my last overdose, when the paramedics were trying to bring me back to life right there on the street in downtown, I told them I'd had enough and that I wanted treatment. But man, these meds hit my brain so hard it's terrifying. I feel like a lab rat being experimented on until they finally stumble upon the right combination for me.

Anonymous said:I'm in a total mess right now. I got stuck in a cycle with drugs and I've been undergoing outpatient treatment under medical supervision for a while now. Honestly, I feel like these meds are hitting me harder than the actual drugs did when I was out on the streets. Currently, I'm taking 18 heptanones, an antidepressant called Citalon, and a sedative called Prazine. Before this, along with the heptanones, I was using ZAN to sleep and taking five 10mg tablets of Apaurin a day. I was strictly using heroin, but once I realized the risk of HIV and Hepatitis, I knew I had to get help. During my last overdose, when the paramedics were trying to bring me back to life right there on the street in downtown, I told them I'd had enough and wanted treatment. But man, all these medications affect my brain so intensely... it’s terrifying. I feel like a lab rat being tested on until they finally find the right combination for me

Hey everyone, and hey to you specifically, Danilo. It is so wonderful that you decided to seek treatment, but listen to an older woman who has seen quite a bit of life. A friend's daughter went through the exact same thing with heroin and started her recovery after several years. The first thing you need is a massive amount of willpower to build a normal life; without that drive, it won't work. Antidepressants are fine, and heptanones are okay if you gradually taper the dose, but stay away from Manditol—that's more for people dealing with schizophrenia, it just wipes your brain, and you definitely DON'T NEED that. Maybe something like Apaurin at night to help you sleep. My friend's daughter made it out; she's a beautiful young woman living a totally normal life now, and she managed to get off heroin in just two months using only antidepressants and heptanones. There's one more thing! GET AWAY from the people you used to call "friends" in the drug scene. Change your environment. Honestly, the best move might be checking into a rehab community for a while. Sending you so much good will and strength to hang in there and pull through...

Anonymous said:I am in a complete mess, totally stuck with drugs, and now I’ve been undergoing outpatient treatment under medical supervision for quite a while, but honestly, I feel like this is worse than when I was actually using and out on the streets. I’m taking 18 heptanones, the antidepressant CITALON, and the sedative Prazine; before that, along with the heptanones, I was taking ZAN to sleep and 10mg of Apaurin—five tablets a day. Back then, it was just heroin, but knowing the risks of HIV and Hepatitis is really the only reason I started seeking treatment. During my last overdose, when the paramedics were reviving me right there on the street in the middle of the city, I told them I’d had enough and that I wanted to go into rehab, but I don't know... all these medications affect my brain so intensely that it's terrifying. I feel like a lab rat being experimented on with different drugs until they finally stumble upon the right combination for me.

Hey,

DON'T THROW IT ALL IN THE TRASH! Sorry for shouting, but just hearing the word Prazine makes my hair stand on end. If you haven't been on it long, toss it all immediately, but if you've been using it for a while, you need to start tapering off slowly.
I have no idea how many heptanones you need or how they make a person feel; that's something only you can know, so trust your gut and do what you think is best.
As for antidepressants, I know it takes a really long time for them to actually kick in, and you really need one good antidepressant to pull through. Whether the one you're currently taking is any good—I honestly don't know. Unfortunately, you have to stay on them (this one or another one) for a long time before you can truly see results.
I also think you need something for calming down. You have plenty of options there, and your doctor chose Apaurin. It isn't necessarily the best or the only choice, but maybe it will help.
With things meant for calming you down, you usually find out pretty quickly whether they work for you or not; if they don't, ask for something else. If they won't budge, go see a different doctor.

Look, regarding the heptanones, just trust yourself. You can handle this. Aside from the heptanones (is there anything else?), if you can get a solid antidepressant and a good anxiolytic, you’ll make it out. Just watch yourself closely and pay attention to your reactions—are you feeling edgy, restless, panicky? How is your sleep?

Hang in there, observe how these meds affect you, keep working on yourself, and you will get through this! 👍 This is a battle you can win! 👍

Good luck!

Anonymous said:I’m in a complete mess. I got stuck in a cycle with drugs and now I’ve been in outpatient treatment for a while under medical supervision. Honestly? It feels worse than being out on the streets using. I’m currently taking 18 heptanones, an antidepressant called CITALON, and a sedative called Prazine. Before this, along with the heptanones, I was taking ZAN to sleep and five 10mg tablets of Apaurin a day. Back then, I was strictly on heroin, but once the fear of HIV and Hepatitis hit me, I knew I had to get help. During my last overdose, when the paramedics were trying to bring me back to life right there on the street in the middle of downtown, I told them I was done—that I wanted treatment. But man, these meds... they hit my brain so hard it's terrifying. I feel like a lab rat in some experiment where they just keep cycling through combinations until they stumble upon something that actually works for me.

I don't have direct experience working with addicts, but from what I see indirectly, people who go into residential rehab programs tend to have the best success rates with recovery.
I’ve spent a lot of time thinking about addiction, and it seems to me that it’s a byproduct of a specific lifestyle. Even though everyone's individual circumstances vary wildly, there’s always a common thread—some underlying pattern that pulls you toward that path. You’re looking at a brutal fight ahead of you. In my opinion, the first real step toward getting sober is to completely flip the script. You need to overhaul your entire existence, from your core worldview down to the most trivial, mundane daily habits. Since you’re feeling completely broken right now, I suspect you might lack the willpower or the strength to pull yourself together on your own. That’s why you need the kind of structured guidance you can only find in a dedicated rehab facility.
The first step is also arguably the worst: you have to grind through the withdrawal crisis in isolation and under supervision. Once you get past that, things start to move forward somewhat naturally, provided you’ve made a rock-solid, internal decision to end this madness once and for all. Keep that goal dead ahead of you, no matter what.
I have a hunch that these folks might be able to help you get the ball rolling:

Anonymous said:I am in a complete mess; I got stuck in a cycle of drug addiction and now I have been undergoing outpatient treatment under medical supervision for some time... yet, I have this unsettling sensation that being on these medications feels even worse than when I was out on the streets using. Currently, my regimen includes 18 heptanones, the antidepressant CITALON, and the sedative Prazine; prior to this, alongside the heptanones, I was taking ZAN to sleep and five 10mg tablets of Apaurin daily. I was strictly using heroin, but knowing the risks of HIV and Hepatitis, I decided to seek help. During my last overdose, while paramedics were trying to resuscitate me right there on the street in the middle of downtown, I realized I had reached my limit and needed treatment... but honestly, I don't know; all these drugs affect my brain so intensely that it's terrifying. I feel like a lab rat being used for experimentation until they finally stumble upon the right combination for me...

I cannot even begin to fathom the hell you are currently enduring. Personally, I am not addicted to anything, so I truly have no concept of what it means to be unable to function without a substance. However, I can say with certainty that the moment you realize these treatment methods are "working poorly," you must recognize that the road to recovery can often feel like an even deeper descent into purgatory than the addiction itself...

My brother passed away from an overdose two years ago, and all I know is that our family began to fracture under the weight of grief because, during his time in treatment, we had absolutely no influence over him—we couldn't reach him to spark any more will or desire to live...

FIGHT!!!! Do not give up!

Danilo, hang in there. You have to stay strong. Honestly, just talking about this shows you're aware of the problem, and that’s half the battle right there. We all on this Forum are dealing with our own heavy, messy situations that life decided to throw at us, so just stay far away from heroin and don't you dare give up. Life is actually pretty good, despite everything.

Danilo, I honestly want nothing more than for you to hold steady in your fight to beat addiction. Just realizing it’s even there—and actually taking steps to fix it—that's half the battle right there. Seriously, all of us on this Forum are rooting for you because we truly get what this kind of suffering feels like...
Best, Dan

Well, the Forum is finally up and running properly😉
Sending my best to everyone—I hope you're all having a peaceful holiday season.
Kisses to all, and try not to overindulge on the food!😛

Finally🙂 My dad’s condition keeps shifting constantly. The last few days have been rougher—he’s running a high fever and struggling to catch his breath... They’ve got him on an IV at home now, giving him something to help with the breathing... hopefully, it passes. I honestly don't even know what to do anymore. He can't get up, so we had to get him adult diapers since he can't make it to the bathroom in time. It's hard for him to deal with all this, but he realized it's just easier that way. Since mainstream medicine basically gave up on him, we started that B17 therapy; we're halfway through now, so we'll see if there's any actual progress once it's finished. We need to get a CT or an MRI done to see what's going on with his lungs. His left eye isn't functioning well at all, so the doctor (without even examining him) says that's most likely causing the fever and the shortness of breath... Has anyone dealt with anything similar?
Wishing you all a wonderful holiday season!🙂

Laura Kelly91 said:Finally🙂 My dad's condition is constantly shifting. It’s been getting worse over the last few days—high fever, struggling to breathe... They set him up with an IV at home and gave him something to help with the breathing... hopefully, it passes. I honestly don't know what else to do. He can't even get up, so we bought diapers since he can't make it to the bathroom. It’s all so hard for him, but he realized it's easier this way. Since mainstream medicine basically gave up on him, we started that B17 therapy; we're halfway through now, so we'll see if there's any progress once it's finished. We need to get a CT or MRI to see what's going on with his lungs. His left eye isn't functioning very well, so the doctor (without even examining him) says that's most likely causing the fever and the shortness of breath... Has anyone dealt with anything similar?
Wishing you all wonderful holidays!🙂

Maybe you should try getting him admitted to a hospital so they can stabilize him. When someone is that weak, they might have picked up an infection that needs antibiotics. Even if doctors have stopped treating his tumor, that doesn't mean they can't help him manage his symptoms. This fever and respiratory distress are serious red flags. He really needs oxygen and whatever else can make him more comfortable.
Ask his primary care physician to come by the house for a checkup and to write a referral for home health nursing—he’s entitled to that in his current state, usually for about 45 minutes a day. If the doctor refuses to visit (which happens more often than you'd think), don't take no for an answer; providing home visits is part of their job description as family physicians. If they still refuse, demand that they sign a formal statement stating they are declining the visit.
Hang in there, stay strong!

Thanks, Ivanica!
I totally forgot to mention a major detail—he’s been prescribed antibiotics. The doctor already stopped by, and a home health nurse is coming over tomorrow morning to administer his treatment via IV, along with some medication to help him breathe easier. He'll be on the antibiotics for five days, so we'll just have to wait and see how things go.

Well, I'm checking in too!
Not much has changed on our end. Mom is still doing things her own way. Even though she’s completely lost track of time—forgetting what day it is, whether it's a holiday or just a random Wednesday or Sunday... she actually went to a New Year's concert at the Lisinski last night. It was a huge wish of hers, so we had to make 😁
happen. If her blood work looks okay, she’ll be continuing chemotherapy this week.
Big hello to everyone, and I'm wishing you all a much happier New Year!

brightgardener8 said:Well, I'm checking in too!
Not much has changed on our end. Mom is just doing things her own way. Even though she’s completely lost track of time—doesn't care if it's a holiday, a weekday, Wednesday, or Sunday... last night she was at a New Year's concert at Carnegie Hall. It was one of her biggest wishes, so we had to make it happen 😁
If her blood work looks okay, she’ll be continuing chemotherapy this week.
Sending my best to everyone, and I hope you all have a much happier New Year 2008!

It’s really wonderful that she got to go. My mom used to love going to those big galas, too. My dad and Mom never really did the whole prom scene back in the day, so they always made a point of going to Carnegie Hall instead.
I really hope you managed to find a little bit of relaxation yourself.