Resources and support for families dealing with cancer and serious illness

Linda Peterson37 said:[ If you want, I can give you the full rundown via DM.

Hey everyone, stay strong!!!!

Come on, just write it out, please?

Angela Wright said:Those sound like tremors. It’s also possible they could be seizures. Was her dad on an anti-epileptic medication like Phemiton?

@everyone

Honestly, you guys barely show up to the association's forum anymore☕. You really need to step it up and start posting over there too. If we all contribute, we can actually build a real database through these shared threads—something that will actually help newly diagnosed people by putting everything in one central place so they aren't left wandering aimlessly. For some reason, everyone seems obsessed with this specific thread and treats it like their home base, while basically ignoring the other section. Sure, a few people just copy-paste their posts, but most of you are completely bypassing the main site. That wasn't the plan when we all agreed we needed a dedicated "hub" to tackle these issues head-on.

He isn't taking any medications except for pain management. This has been happening for the last few days. He’s seeing the doctor at the end of the week, but for what? They’ve basically given up on him. They see him every two weeks, but the travel wears him out so much that after ten minutes of talking, they just send him straight back home...

I check the notifications regularly and read everything, but I just don't have the time to write, and honestly, it’s becoming too emotionally draining to type it all out..

Amy Hayes28, your inbox is totally slammed—I can't get a message through to you.

gentlemoose62 said:Your story really struck a chord with me. Being only 24... that is just devastating.
It’s wonderful that you're trying to help, and I can only imagine how incredibly heavy things feel for the whole family right now.
As far as I know, there aren't any medical professionals among us here, so it's hard for anyone in this group
to offer specific clinical advice. It is true that with Crohn's disease, there is a significantly higher risk of developing colon cancer, and I know that leads to very frequent check-ups, so I struggle to understand how this wasn't caught sooner. But, what's done is done; there isn't much point in dwelling on the past.
If I understood you correctly, the PET scan didn't show metastasis in the liver,
but rather just small spots in the intestines at 1.5 cm and the lungs at 1.2 mm, while everything else remains uncertain. If that's the case, from my layman's perspective, it doesn't sound quite as bleak as it could. He is so young, and seeing him immobile like this is heartbreaking—perhaps it would be worth pursuing a second opinion based on his latest results just to see what else might be possible.

I know how difficult this all is. Please stay by his side if he seems to find comfort in your presence; try to offer him whatever optimism and hope you can. Maybe share some of your thoughts or future plans with him, because when someone is sick—especially when they are bedridden—it can be deeply empowering to see that someone is still fighting for them and looking for answers, no matter how dire things seem. Just keep helping him in whatever way feels right and as long as he and his family are comfortable with it.
Hang in there.

I truly believe he is in good hands, though there is always room for improvement...
But what worries me is that it's an adenocarcinoma (if I recall the term correctly)—they say that's one of the toughest kinds. It often feels like many doctors, without even diving deep into the charts, strip away all hope the moment they hear that diagnosis, almost as if everything were simply in Godly hands or something along those lines....
I can't help but wonder if things are being kept from him—whether from the doctors or perhaps even from his parents (though I doubt that)... I just don't know....

We just have to take it day by day, month by month... maybe there is still hope after all....

My mom is back on chemotherapy again—taking 120mg of CCNU every six weeks—after we managed to go almost a year without any treatment at all. She’s been through this exact same regimen before, and I remember how every single day she was on the CCNU (along with her Reglan tablets) was just defined by brutal nausea and vomiting; even back then, she still had some mobility and was doing relatively okay overall. This time around, we decided to try something for the nausea called Kytril, which we picked up at the pharmacy—it comes in a small box of 10 tablets $227—and honestly, it turned out to be a total game-changer. She took one Kytril about an hour before the CCNU, and then another one twelve hours later, just following the instructions provided. The nausea and vomiting didn't even touch her. I can't help but wonder if our focus on keeping her diet really light helped too, since we've been sticking to mint tea, ginger tea, and very mild foods that don't have any overwhelming smells or flavors. She’s also taking Medrol, which I recall reading somewhere might actually assist with the process.

rapidseal49 said:I really believe he's in good hands, though there's always room for improvement...
But I'm honestly worried because it's adenocarcinoma (if that's the right term)—they say that's the toughest kind. It feels like so many doctors strip away all hope the second they hear that diagnosis, acting like it's all up to God or something...
I can't help but feel like something is being hidden here, whether from the doctors or maybe even his parents (though I doubt it)... I just don't know...

Just taking it day by day, month by month... maybe there is still hope...

He’s definitely in Godly hands, but we can't let that kid lose all hope. I don't know...
I'm not sure what to tell you, especially if things aren't being fully shared. Seriously, looking at the PET scan, things don't seem nearly as bad as they could be. And from what I understand, adenocarcinoma isn't necessarily the worst type—I actually dealt with IIIc adenocarcinoma myself, but
it really all comes down to the level of differentiation...

Everyone handles these situations differently, and it's so tough when you're stuck in this spot... you're terrified of influencing someone to make the wrong move, but you don't even have the full story. He's just so young...

Help,
Does anyone happen to have a connection at a wellness resort or a medical spa—doesn't matter which one—that includes a dedicated rehabilitation or hospital wing? My mom will likely be discharged from the hospital this week, so we are urgently looking for a facility where she can be transferred to help her get back on her feet.
Every single place I've called has a waiting list of at least two months.🙏

Hi everyone. I’m new to this thread, so I want to wish you all the best with your treatments. Both of my parents battled cancer—my mom had breast cancer and my dad had abdominal cancer. Mom had surgery in late '99, went through a cycle of 6 rounds of chemo and 36 radiation sessions, and was clear for 8 or 9 years with regular checkups. Dad got sick in June 2006; he went straight into surgery, took 11 rounds of chemo plus an unknown amount of radiation, and unfortunately passed away in the summer of 2007.
Does anyone here know anything about leiomyosarcoma (abdominal)? That’s what my dad fought, and I can’t find much useful info online. According to his doctors, it’s one of the worst kinds—extremely rare, too. Right after surgery, the prognosis was grim, maybe 2–3 months to live. We fought alongside him, though, and he managed to hang on for just over a year. When they first found the tumor in his abdomen, it was about 23 cm. They managed to surgically remove about 85% of it, then tried to wipe out the rest with chemo. But even the strongest drugs couldn't touch it; that remaining 15% just started growing uncontrollably, and there was nothing left to do.
I still struggle with the thought of how long that thing was sitting inside him before we caught it. Does anyone have experience with this specific type of cancer or know anything about it?

urbanbison70 said:Hey everyone. I’m new to this thread, so I want to wish you all nothing but the best with your treatments. Cancer runs in my family—my mom fought breast cancer and my dad dealt with abdominal cancer. Mom had surgery in late '99, went through a round of six chemo sessions and 36 radiation treatments, and she was clear for about 8 or 9 years, provided she kept up with her checkups. My dad got sick in June 2006; he went under the knife immediately, had 11 rounds of chemo plus an unknown amount of radiation, and unfortunately passed away in the summer of 2007.
I’m trying to find information regarding leiomyosarcoma (abdominal). That’s what my dad had, but I can’t find much useful info online about it. According to his doctors, it’s one of the most aggressive types out there and incredibly rare. Right after the surgery, the prognosis was grim—they were looking at maybe 2 to 3 months. We fought right alongside him, though, and he actually managed to hang on for a little over a year. When they first found the cancer in his abdomen, the tumor was about 23 cm. Surgery managed to remove roughly 85% of it, and then they tried to wipe out the rest with chemotherapy. But honestly, even the strongest chemo couldn't touch it; that remaining 15% just started growing uncontrollably again, and we ran out of options.
I can't help but wonder how long that thing was actually inside him before anyone caught it. Does anyone here know someone who dealt with this specific type of cancer, or have any insight into it?

Here you go, this link has more info on leiomyosarcoma.
It’s a very rare type of soft tissue sarcoma.

Angela Wright said:Check this out, here is more info on leiomyosarcoma.
It's an incredibly rare kind of soft tissue sarcoma.

Thanks a lot for the link.

Angela Wright said:@everyone

It feels like you guys aren't really making it over to the association's forum very often lately☕. Could we all try to be a little more active there? If we can all contribute, we can turn those separate discussion threads into a massive, organized database that will eventually serve every newly diagnosed person—giving them everything they need in one single spot so they don't have to wander aimlessly looking for answers. It seems like everyone has grown quite attached to this specific thread, which is why you all tend to pop in here so consistently. While a few people just copy and paste their thoughts from elsewhere, most of you seem to bypass the other site entirely. But wasn't that the whole point when we first agreed that we needed a central "hub" to tackle these issues together?

As I’ve been skimming through the various threads, I realized that you’ve become "our doctor"—I mean, I might be flattering you a bit, but it truly is such a pleasure to see you back here again. Even though I'm still quite new to all of this, being the daughter of a patient diagnosed with small bowel cancer (she had surgery, though unfortunately with metastases in the liver and peritoneum), I feel like I've already learned so much from all of you. Honestly, you all provide more genuine help and support than any doctor ever could. 😉Regarding that "central hub" idea, since we aren't all living right here in Washington, D.C., it would be impossible for us to meet up on a national level. That’s why, for those of us living far away from the capital, this forum feels like such a soothing balm for our wounds.
Angela, a special hello to you! Pusa Fiza, Sandra Evans13 (dear sis), and a huge thank you to everyone else for all the help and support you provide!👍

Hey everyone,

So, like I mentioned before, my coworker’s daughter (born in '82) is battling osteosarcoma in her right knee. She’s been getting treatment at a major hospital in Washington, D.C. under Dr. Shante. It started with chemo, then she had to go under the knife for a total knee replacement—because the tumor actually caused the bone to fracture—followed by more chemo. Everything seemed to be heading in the right direction, or so we thought. But then, last December, a PET scan came back showing a recurrence of the sarcoma. Now they’re looking at aggressive chemo and radiation, but if that doesn't do the trick, they're talking about amputation.
Everyone is absolutely reeling because she's so young; she has her whole life ahead of her. Look, I get that having a healthy mind is the most important thing, but man, it’s just devastating to face the reality that this girl might lose her leg....

On another note, I stumbled upon something called ISCADORA, which is based on ivy. Apparently, it’s supposed to be incredibly effective when dealing with cancerous diseases.

Has anyone here actually tried it? Or does anyone have any general experience or advice regarding this brutal kind of tumor...

I actually did some digging online for my coworker, looking up this specific type of sarcoma, and everywhere I looked, it said a full recovery (with the prosthetic) is possible in over 80% of cases. But then you see how harsh and unforgiving the actual reality can be....

Hang in there, everyone. Wishing you all the absolute best in your own battles against these nasty illnesses...

Thanks in advance for any insight you can share...

jadetinker42 said:Hi everyone,

So, I’ve been hearing about this holly-based remedy called ISCADORA, which is supposedly incredibly effective at treating tumorous diseases.

Has anyone here actually used it? Or, more broadly, does anyone have experience dealing with this kind of nasty tumor...

I was pulling up some data online for a colleague regarding this specific type of sarcoma, and everywhere I looked, it suggested that a full recovery (with an endoprosthesis) is possible in over 80% of cases. But, of course, real-world practice is often much harsher and more brutal than what you read on a screen....

Wishing you all the very best in your battles against these terrible illnesses...

Thanks in advance for any insight you can offer...

Sarcomas are primarily treated with cytostatics, and ISCADORA isn't a cytostatic. My guess is that ISCADORA might be used as a supportive therapy. Sarcomas—specifically osteosarcoma—are among the more common cancers seen in children. It’s the most well-known type of sarcoma.

Treatment is quite advanced these days. However, there are certain types that are far more aggressive and prone to recurrence, much like the situation with the little girl.

It is vital to realize that sarcomas most frequently metastasize to the lungs. If you are dealing with a particularly aggressive strain, you really have to follow every single measure the doctors recommend. No doctor would suggest an amputation without good reason. I hope you understand where I'm coming from.

Dr. Shante is an exceptional physician and a true expert; please try to talk with him and listen closely to his advice... no matter how difficult the decision may feel...

rustyscout31 said:Regarding the idea of a "central hub," let’s be realistic—not all of us live in Washington, D.C. It would be practically impossible to coordinate meetings on a national level. That’s why, for those of us living outside the metro area, this forum feels like a lifeline.
Angela Wright, a special shout-out to you! Sending love to Pusa Fiza, Sandra Evans13 (my dear sister), and everyone else providing such vital support.👍

Angela Wright was actually referring to the association's forum. Our community space was designed specifically to bring together people from various cities, small towns, and even different states. I think you might have misinterpreted her invitation.

Hey everyone, old friends and new alike!
Hang in there and don't lose heart. Let's lend a helping hand to those who are struggling. We're always stronger together! I'm just sitting here waiting on my marker results and trying to stay sane, but I'm staying hopeful...

My brother and I finally managed to talk Mom around to moving to the facility in Springfield. She actually took it surprisingly well—she even called the doctor herself to request the referral. I also had a long conversation with the professor today to make sure they keep her hospitalized until she’s officially admitted in Springfield (most likely this Friday); otherwise, they would have just discharged her tomorrow. On top of everything, she was vomiting twice again today. Does anyone happen to know what might be causing that? The professor claims this is just a standard part of the recovery process, though I did point out that it feels like things are actually regressing. I suppose he knows best, and God willing, he's right. I hope I don't sound terrible saying all this, but the reality is that I simply am not in a position to provide the level of care she needs to get back on her feet. I'm really hoping they can get her stabilized there. Once she's better, she'll want to head to a spa resort, and we’ll make sure that happens too.

Hey everyone. We just got hit with some brutal news—my dad’s dealing with a brain tumor and lung cancer. 😢😢
The doctors couldn't operate on his lungs, but they did a Gamma Knife procedure on his brain at a clinic in Washington, D.C.
He started chemo, and he's already on day three. The first day, the infusion took six hours, and then he was just puking little bits all over the place after. Today, he's been hiccuping constantly all day long. I have no clue if it's from the chemo or what, or how to make it stop. 😕
We are seriously terrified... 😢

rapidbear8 said:Hey everyone. We just got some devastating news—my dad's been diagnosed with a brain tumor and lung cancer. It's a hell of a blow. 😢😢
Surgery wasn't an option for the lungs, so they ended up performing the brain procedure using Gamma Knife over in Washington, D.C.
He started chemo three days ago. On the first day, the infusion dragged on for six hours, and he was dealing with constant bouts of vomiting right after. Now, he’s been hiccuping all day long. I honestly can't tell if this is just a side effect of the treatment or something else entirely, and I have no clue how to make it stop.😕
We’re all just paralyzed by fear...😢

It’s possible this is just a side effect from the chemo, but since hiccups are essentially a neurological trigger, we can't rule out that they might be a symptom of some kind of neurological glitch caused by a brain tumor.

I know some people swear by Coca-Cola as the ultimate remedy for easing chemo side effects. Personally, I’m healthy, but whenever I get hit with a bout of hiccups, a little Coke does the trick for me. One good burp and the whole thing clears right up. Honestly, someone should give it a shot—it’s definitely not going to hurt them. Check out this link.Increased CO2 levels in your bloodstream can actually help kick a hiccup spell, and thank God there’s plenty of that stuff in Coca-Cola. So, honestly, you might as well just chug it.
I’ve got this nagging feeling that even something like a muscle relaxant—take a sedative like Normabel, for instance—might actually help. It works by physically loosening up your muscles, which could be exactly what's needed here.

Hey there, my fellow warriors!!!
I’m reading and following along with you guys every single day, though—I’ll admit—I rarely jump in to say anything.... So, it’s been six weeks now, and I’m gearing up to head back to Germany this Sunday for immunotherapy... things are mostly going okay so far... the aftermath from the last surgery and chemo is hitting me a little harder than before, but hey, it isn't totally unbearable.....

P.S. Nancy Thomas18—hang in there, things have to get better :-)
gentlemoose62—I hope you’re doing well and staying upbeat; honestly, I’m a little jealous of all those amazing scents you get to enjoy out in California :-)

And to EVERYONE, EVERY SINGLE ONE OF YOU, whether you're a new fighter or an old hand, I'm crossing my fingers for you and I truly believe you'll win this fight against that "jerk"

Sincerely yours, Dina

Grace Fowler said:Hey there, my fellow warriors!!!
I read everything you guys post every single day, though I have to admit I rarely jump in to say anything... So, it’s been six weeks now and I’m getting ready to head back to Germany this Sunday for immunotherapy... things are mostly looking up... the side effects from my last surgery and chemo are hitting me a little harder than before, but nothing I can't handle.....

P.S. Nancy Thomas18—hang in there, things have to get better! :-)
gentlemoose62—I hope you're doing great and staying positive, honestly I'm a little jealous of all those amazing scents you get to enjoy out in California :-)

And to EVERYONE, old and new fighters alike, I'm rooting for you and I know you'll beat this "monster"

With love, your Dina

I just wanted to say how much I always love seeing you pop in here.
Sending you some virtual vibes of pine trees and ocean breezes from my home in California, and I truly hope
that this round of immunotherapy helps you just as much as the previous ones did.
I'm not worried about you one bit—you've got this, because you know these are just the leftovers from the surgery and chemo, nothing else.
Take care, we're always right here with you.