Posts by Richard Smith31

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..

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?

Hey there, old friends and new🙂

Has anyone here dealing with brain tumors experienced facial twitching on one side?
What should I be looking out for?
Over the last two or three days, the left side of his face has been spasming several times a day...

Sending my best to everyone, hang in there🙂

Hey there, everyone—old friends and newcomers alike 🙂
We’re still stuck in this endless waiting game, and honestly, nothing has changed at all.
The new CT scan from the day before yesterday was just awful, so now we’re just sitting tight until Monday to see what the next move is...

Kate Ramos40 said:I’ve been following this forum for about a month now, ever since this illness hit our family—it’s a brain tumor.
I’m going to try to lay everything out in order. This involves my father-in-law, who is 64.
About a month and a half ago, a CT scan confirmed there was a tumor in his brain. At first, we thought it might be a metastasis, so they ran a chest X-ray immediately; those results came back clear. The doctor decided to move forward with surgery, which took place on February 7th, 2008. The procedure went well, and my father-in-law recovered beautifully. Seven days later, we had another CT. Everything looked good. However, we still didn't have an official diagnosis because we were waiting on the pathology report... and we waited... After a full month, we finally got it. It’s Glioblastoma Multiforme, Grade IV! We’re all back in a state of shock, scouring the internet and realizing just how brutal this is. My father-in-law is actually doing okay right now without any active treatment. Finally, last Monday, March 10th, he saw the oncologist with all his paperwork, and they recommended radiation starting in about a month?!
Is two months too long to wait, especially if it ends up being longer? What’s the situation like in Washington, D.C. regarding wait times? Where should we even begin?
Just to clarify, we are based out of Miami.

I am telling you from the bottom of my heart: get out of Miami!
I mean this with total seriousness. The absolute biggest mistake we ever made was relying on that Miami hospital!
Make exceptions only for the rare cases where people actually know what they're doing, but unfortunately, those people are just side characters there.
Wishing you the best. 🙂

brightgardener8 said:Where did all the 'old guard' users go? Dandelion, Blaise, Dina, Amy Hayes28... where are you guys?
Maybe they're hanging out on some association website... I can't keep up with everything online lately.

I'm still here, keeping an eye on the threads.🙂
Honestly, things just seem to be getting worse and worse.😢
He was sent home from the hospital, and his condition after the radiation hasn't improved at all—if anything, he's physically worse now. We have a follow-up appointment in a month.😂
Since yesterday, he's been in excruciating pain, so we're just waiting to see if the doctors tell us to head back in or stay put.🤷
The truth is, these "new" pains have absolutely crushed him mentally.
I am right on the edge of despair; I feel completely pessimistic about everything.👎
The hardest part is having to look him in the eye and tell him things will get better🙂—that empty, hollow "better"!
Realistically, "better" won't happen until he's gone, once he's finally spared from all this misery.😵
I'm being a total pessimist right now, I know. I’ve sunk into such a dark hole that I can't seem to swim my way out.👎

Love you all, hang in there.🙂

Linda Peterson37 said:My dear dad has been in the hospital since Friday... his condition took such a sudden turn for the worse that we were all caught completely off guard. Even though we already have a diagnosis, he had actually been doing okay, just dealing with occasional neurological episodes that stabilized pretty quickly.... It turns out he has brain edema, so I've been doing some digging here on the forum and all over the web to see what can be done. I've seen that many people have experience with Mannitol, and that's what they're giving him right now... Can anyone give me some specific insight regarding this medication? I haven't even had the chance to catch up on all the pages yet.....

I am just devastated. I break down several times a day, and my stomach is in knots because it's so incredibly hard to see him like this... I just want him to be able to get out of bed again..
We are also giving him some alternative supplements that some of the top experts in this field here in America recommended, but I can't shake the feeling that there is more that can—and should—be done...
I'm just so angry at everyone and everything because he's the one going through this...

He’ll get better. My dad went through similar "episodes," and his condition improved again. They drained the fluid for him, and he’s on Dexedrine which is really helping fix things!
I know how agonizing it is to see him in that state, but it is what it is. Hang in there and stay strong; my old man hasn't had any issues with edema for a good month now.🙂

Alex White6 said:Hi everyone. Honestly, this is the kind of thread I always hoped I’d never have to start, but unfortunately, here we are.
I recently found out that my aunt, who I've been living with for six years now, is battling stomach cancer. It was only caught in stage 4—it's already advanced. I'm moving through the stages of shock, grief, and endless crying, but now I'm hitting the anger phase. I'm furious—trying everything in my power to make her life easier right now—but I'm also just pure rage at this disgusting, sneaky disease that I want to crush alongside her. And finally, I am absolutely livid at this one highly acclaimed, famous, and "overly qualified" gastroenterologist in Washington, D.C. He was completely incapable of diagnosing a tumor that was already in an advanced stage, and he wouldn't even perform a gastroscopy despite her telling him for months that she wasn't feeling right.

Because of his total nonchalance and supposed "expertise" (she went to him for stomach issues, and he somehow "read" uterine fibroids and polyps on an ultrasound—which, of course, didn't even exist), the tumor perforated her stomach, and she nearly died from sepsis.

Thank God for the doctors at Rib who reacted so fast and saved her life. Her condition is critical, but we're hoping for the best possible outcome.

As for that "expert" gastroenterologist, all we can really do is look into a private lawsuit, but I'm terrified that given his reputation, it would be like tilting at windmills.

Hang in there, everyone. I'm heading off now to visit my dear aunt and try to make her laugh a little.

I am so incredibly sorry about your aunt.😢
Unfortunately, you won't achieve anything by staying angry; try to channel that energy into something productive instead, or just save it—you're going to need it!
I've snapped a million times myself, and if I could sue half the healthcare system instead of just biting their heads off, I would. But it is what it is, and hopefully, things will change someday! At the end of the day, doctors aren't gods either—especially when it comes to cancer—and they're often just stumbling around in the dark themselves.
Stay strong.🙂

mellowbadger5 and casualpanther1, thanks so much for the heads-up🙂
It sounds like a serious option worth looking into!
So, if I’ve got this right, I need to get in touch with them and fax over the diagnosis so they can map out a treatment plan? I'm going to give them a call first thing tomorrow morning—we've got nothing to lose!

Hey everyone🙂
Has anyone here actually tried products from Mykosan www.zdravljeizgljiva.hr??

Elizabeth Gonzalez55 said:I can give you the exact breakdown: the first cycle consists of 8 injections over a three-week period, costing $15,000. On top of that, we had to cough up an extra $1,000 deposit to cover incidental expenses—things like lab work, consultations, leukapheresis, and just the administration of the injections themselves.

If it actually works, you're looking at another $15,000 for the second cycle, and then about $2,000 per year for a single maintenance injection for the rest of your life.

Since he was seeing doctors in America, did you guys reach out to them yourselves?
Thanks

Linda Wright5 said:I can tell you about my sister's experience... About six months before her surgery, she started dealing with these intense cramping episodes. Her entire abdomen would just seize up in pain, and while it would pass after a day or two and she'd feel fine again, it was clearly a warning sign. During her exam, they found a cyst that turned out to be malignant...
Good luck with the surgery. I'm rooting for a speedy recovery and a full return to health 🙂!

Thanks🙂

Melissa Kim45 said:I won't list everything, but I'm rooting for everyone—stay strong out there. 😘

God, I love reading your quotes. I really wish you'd write when things are actually going better, but honestly, you still blow me away.🙂

Angela Wright said:Based on everything you've described, I'm pretty sure you're dealing with endometriosis. Welcome to the club.🙄 Look, you’ll be just fine, but you seriously need to ditch that stuff and focus on healing your liver. If you don't, you're going to end up dealing with those ab pulses, which put just as much strain on your liver while you're waiting to decide on having kids. Honestly, there's an entire section of the women's forum dedicated solely to endometriosis—you really didn't need this added to your plate right now.😳

Thanks for the warm welcome!😁
I’ve been taking this for years now, so we'll just have to wait and see when it finally kicks in. Honestly, part of me thinks it might actually work, but I can't shake this nagging anxiety about the ovaries. If they aren't functioning anyway, it’s probably better if they just get removed.🙂

Angela Wright said:😲What’s your deal now?

Honestly, I don't even know where to start—it's a long story involving everything I've dealt with "down there," basically a tiny little biological disaster zone.😁
So, I've been dealing with this grayish bleeding since October, which shouldn't be happening at all since I've been taking my supplements non-stop. I figured maybe it was just stress, but then the pain started—these constant cramps, let's call them—to the point where sex is completely off the table.😁
And then there's that ovary. By the way, it hasn't really functioned for a while because it used to have this cyst that basically "smothered" it. Now, it’s practically hiding, and my doctor says things look weird. My markers are up, too, though they say that doesn't necessarily mean anything malignant—apparently, those numbers aren't always a true reflection of what's actually happening. My doctors think the CT scan isn't giving them the full picture of what's going on "down there," so they're planning to just go in and clear everything out via laparoscopy.
On top of all that, my liver is swollen. I have an appointment for that on the 29th, and the surgery for the ovary is set for February 18th.
I mean, it should be fine. Why would I want to keep growing something inside me that serves no purpose other than causing me pain?

Hey everyone!!🙂>

casualpanther1, just like Angela Wright was saying, there’s been a ton of confusion because the doctors haven't been giving us much to work with—it seems like they were actually talking about Sutent!
Huge congrats on your wife's great results; honestly, seeing wins like that is the only thing that keeps me from spiraling into total gloom.🙂 Hang in there!

Anyway, I need to pick your brains on a few things!
Does anyone here have actual hands-on experience with Sutent??

Question for Elizabeth Gonzalez55: roughly how much does DCvax cost over in Germany?

For the ladies dealing with ovarian cancer—besides an elevated marker, did you notice any other symptoms? How did you first find out something was wrong?
I'm heading in next month to get my own levels checked.😁

Charles Newman said:Thanks for the support, everyone.
Things hadn't changed at all. When my dad asked if she wanted some water, she actually opened her mouth and sipped it from the syringe.
I couldn't bear to watch anymore, so I went to my girlfriend's place to sleep. This morning, she passed away.😢
Honestly, I don't even know what to say. I'm just numb.

My sincerest condolences.😢
🙂

Just wanted to drop in and say hello to everyone, both the regulars and the newcomers.
I’m still here, keeping up with all of you and reading everything. I also want to say thanks for all the private messages and the support you've been sending my way.🙂
As for things on my end, nothing has changed—it’s still the same old story over here...

My dad is being discharged from the hospital today and sent home.😢
They’re telling us that radiation therapy actually made things worse.
The tumor is just spreading, and on top of that, he’s dealing with burns and diabetes..
There isn't anything they can do anymore; whether he goes home or stays, what does it even matter? What's the point?
This is total bullshit... what are we supposed to do now???
It’s just like that—nothing left to do, he just goes home... takes his insulin and waits!!!
And then what?? Just wait to die or something???

Laura Kelly91 said:Hey everyone,
I’ve been gone for a while, and unfortunately, it’s because some truly terrible things have happened. My dad passed away on January 10th, after struggling through several days of agonizing pain. His condition just took a sudden, sharp turn for the worse... it was horrific, and honestly, it still feels that way. He left us only eight months after my mom, who fought a losing battle against cancer for twenty days. He was diagnosed with a tumor just three and a half months ago. At least they’re together now, though I am beyond heartbroken—to be honest, I feel completely numb.
Look, I want you all to know that I am standing right there with you in this fight. Despite everything we’ve been through, I honestly believe that winning is still on the table. We have to exhaust every single option and leave nothing on the field—there are just too many success stories out there to ignore. So, keep pushing, keep fighting, and whatever you do, never, ever throw in the towel!

Take my sincere condolences.😢