Posts by fadedtrucker5

Angela Wright said:Did they give you hot compresses?

No, though I guess doing that now would just be torture, since I'm still recovering from those massive surgeries. My physical therapist showed me some exercises... it’s all about reminding my brain that my limbs actually exist. It’ll get there eventually, I suppose. Things are moving along okay, considering I couldn't move a muscle before. Being home is everything, though—my family is stepping up to help. As skilled as the nurses at the hospital were, having to call someone just to go to the bathroom was driving me insane. That level of dependency on strangers... it's too much. And being stuck in that bed for nearly three months? It absolutely killed me.🙂

Angela Wright said:Oh my God! Well, I guess it doesn't matter that you came out on top again. Just... maybe try being such a terrible woman from now on?😍
How are you doing? Any side effects yet, I guess?

This trip took my left side away from me. I'm still relying on help to walk and my left arm is pretty weak, but... maybe things will improve with time. 😉 I'm alive and I don't have any pain, which I guess is the most important thing. 😁

Hey everyone. Here I am again, facing my fourth tumor and seventh surgery.
I was wondering if anyone here has ever tried Graviola, and what your experience was like?

🙂 Hi

Angela Wright said:You might actually get access to cutting-edge treatments. If you end up needing lifelong medication, the pharmaceutical company running the study usually picks up the tab, even after the trial wraps up. Since you're dealing with a rare tumor, finding studies is tough—there just aren't many patients. When they do run them, the whole goal is to recruit enough people to make the data actually mean something.
In the US, signing up for clinical trials is pretty standard. I know plenty of people with aggressive tumors and terrible prognoses who have managed to live for years because of these trials. They practically live from one study to the next, and honestly, it works.
Here is the site where you can find basically every active study out there: http://clinicaltrials.gov/

Oh, thanks. I had absolutely no idea about any of this. 🙂
Unfortunately, since everything started falling apart, my husband and I have had to basically teach ourselves everything about medical jargon and tumor types just to hold a coherent conversation with doctors, ask the right questions, and try to grasp what they're telling us. In all that chaos, I never stumbled upon what you mentioned. Our only focus was just surviving and trying to figure out what was happening. I suppose I'll look into it, since my case seems to be such a curiosity, though nobody can give me a straight answer on what I actually have. The diagnoses have been all over the place—everything from PNET and kidney carcinoma to astroblastoma and choroid plexus carcinoma, until the final word from the specialists in New York that it's an anaplastic ependymoma with a proliferation index north of 70%.

Jesse Roberts79 said:I haven't checked in here for a while... been tied up with family stuff and, naturally, my dad's condition. He got back a week ago after five days of chemo at the Memorial Sloan Kettering hospital. It went poorly, obviously. He’s struggling to keep food and fluids down. He dropped another 2kg, so he’s sitting at 61kg now, down from 80kg before surgery. His lips look like those of some famous fashion critic—all cracked and burned. He’s being a bit difficult, too. Stubbornness is part of the illness, I suppose. I'm frustrated because he hasn't even tried to stay hydrated. He's been on an IV drip for two days now. He’s acting a bit erratic. He even started drinking raw eggs!
By late May, he needs to go see the doctor about a 35-day treatment plan at the radiology center near Dr. Peđa's clinic. Does anyone know if that's located at Memorial Sloan Kettering or somewhere else? Also, I have no idea how to handle housing for 35 days in New York City. He refuses to go to a place like Osijek, which is what I suggested. So, I need to find a place for him and my mother near the hospital for that month. Does anyone have leads on rentals in that area? Honestly, I'm just worried about how he'll manage both radiation and chemo for a full month. I'm afraid they might just send him home after a few days. Any advice? Thanks... hang in there and fight...

I think we might cross paths since I should be undergoing radiation around that time. There should be plenty of rentals nearby; maybe check Zillow for listings. Radiation doesn't hurt, so that shouldn't be an issue, though everyone reacts to chemo differently. If he can't eat, he really ought to try protein shakes to get his nutrients and calories up. Good luck!

Angela Wright said:fadedtrucker5, maybe try getting into a clinical trial over there. I guess you’d be a solid candidate given how this disease works. Just Google it and pester some Americans until they point you toward a study. Hang in there!

I don't really follow... just tell me what I'm supposed to get out of it?
Thanks 🙂

Hey everyone, checking in after getting back from yet another surgery. The tumor came back for the third time, just above where the second one was. The first two sites are totally clear now, which is honestly just confusing my doctors and neurologists... I guess because this kind of metastasis isn't even how brain tumors usually behave.
I’m sitting here with seven different diagnoses (PhD level stuff) now, including the latest one from Memorial Sloan Kettering in New York, where we paid $4,000 just for the consultation.
The tumor is aggressive—terrifyingly so. It grows incredibly fast, doubling in size in just a month. This time, it hit the dura mater too, which they removed during the procedure. Luckily, my neurosurgeon is incredible; he always comes up with a plan and manages to get the whole thing out. I feel fine right now, but there's full-body radiation and a mountain of chemo ahead. Honestly, I'm used to the chemo by now, so that's not the hard part. The real issue is the recurrence—having to go under the knife again so soon. My second surgery was in January, the third in April... I don't know how much more my body can take, even if I am young. My doctor promised to keep operating as long as it takes, and I'm just so grateful for that.
The bureaucracy makes everything harder. The waiting lists for MRIs are insane, the staff is completely burnt out, and you can really feel the budget cuts in the healthcare system. It feels like if you aren't persistent enough, or if you don't have the money, you might not stand a chance. Let's be real—who can actually afford $8333 for a second opinion or $1167 for a cervical MRI? It's a grim situation for patients.
On a brighter note, the neurosurgeons and nurses at the hospital in Washington, D.C. are amazing. They are probably the only light in all of this. I haven't met so many dedicated people who clearly view their work as a calling rather than just a job.
The hospital just got a new linear accelerator, which should help cut down the wait times for radiation at the local clinics and the major cancer institutes, so that's a plus.

Anyway, I still love life. I'm happy every morning I wake up. I'm surrounded by people who love and support me, and I think everyone fighting this knows how much that matters. Sometimes, people just need love.

One more thing—preparing for radiation, I started taking two new supplements from Solgar, the V formula (basically massive doses of vitamins and minerals that give me energy) and an antioxidant formula. They're pretty pricey for a month's supply, but they seem to be working. Maybe it's the high vitamin intake, but my appetite is good, and the antioxidants seem to be flushing toxins out.

Best to you all, hang in there.😍

Kate Brooks2 said:Greetings to everyone, especially fadedtrucker5. 🙂 Glad to hear you're doing okay. Just keep pushing forward, I guess. It’s been a while since I checked in, but here I am with some actual good news. The tumor shrunk by 5 cm. Yippeeeeee! We’re just so relieved there was progress again after those three cycles. My brother-in-law is feeling great—he actually gained 13 lbs, which is huge because he lost so much weight at the start of this whole ordeal. His bloodwork looks solid now, so we’re ready to tackle the next three prescribed cycles and see where things go from there. He feels like his old self again. It makes us all so happy. Don't give up; maybe there really is hope. Best wishes.

Well, bravo. Fantastic news. I guess credit where it’s due—your resolve and commitment are impressive. Someone like you might actually get someone healthy in no time... maybe. Bravo. 🙂

Hey everyone, I finally made it home from the hospital after 15 days 😍
The surgery went well, I guess. They took everything out, and the follow-up CT scan looks fine.
Anyway, I'm just glad to be alive, so we move forward...

Kisses to all 🙂

I

feralridge3 said:Greetings from my end. I don't follow this thread much—too heavy, and I suppose I'm just sensitive to that sort of thing—but amidst all the bad news, I figured I'd drop some good news here. 🙂
After 3 years, 7 months, and 6 days on medical leave, I'm finally back at work on light duty. For those who don't recall, it was a malignant brain tumor; one recurrence happened, and a second was caught early.
I'm not quite my old self, skill-wise. My optic nerve is damaged, and I've lost some hearing, but I'm not giving up yet. I guess I'm just living day by day, seeing how far I can get. 🙂 The specialists told me that, all things considered, I did pretty well. ☕
For me, being able to work matters. It means I'm not dependent on anyone, physically or financially. 🙂
I wish you all, or your loved ones, success in fighting the evil.🙂

Same diagnosis here. Just dealt with the first recurrence, and I'm hoping for a slightly longer stretch of peace now. I had one beautiful year between the tumors, and I'm praying we can stretch that out a bit more so I can keep fighting. Thank you for reaching out...
Sending big kisses to everyone, and thanks for being there for me. I'll probably head home this Friday, and I'll try to meet every morning with a smile, just like I have been. 🙂

Kate James38 said:Hi everyone... hope you're hanging in there... and staying strong...
I need some help,
right now Natulan-Prokarbozin isn't available in America, Canada, or Canada; it's being ordered from Germany,
but it won't arrive in time for my current chemo cycle,
if anyone happens to have this drug, I need 200mg,,that's for 2 days, I'll pay you back, please...

I have Natulan-Prokarbozin, so if you need it, send me a PM!

My dear friends... reaching out before heading to the hospital. So, I got my MRI results yesterday and it looks like I have another tenant in my head who refuses to pay rent. 🙂
The doctor is positive, and so am I. Surgery should be at the end of the week, and I guess I'm hoping everything goes okay. My main priority is just getting this headache to stop...
I'll check in once everything is over, but until then, sending hugs and warm wishes to you all. Stay strong through whatever you're facing. 🙂

melloworca6 said:Oh, I was just thinking about you the other day and wondering if you were okay. I see you're staying positive as always. 😍 🙂

I really admire people like that—when things are at their worst, instead of letting it break them, they lift everyone else up with their courage and optimism... Hang in there. 😘

🙂

Yeah, I am. Everything is fine. 🙂 Today marks exactly one year since this whole mess started. I can still vividly remember that headache waking me up at 4:30 AM; how I ate a banana just so I could take a painkiller, only to end up throwing it all back up later. Back then, they thought I had a neck injury because I’d slipped on some ice two days prior. I spent my days wearing a brace, just dying from the pain, until a nurse finally forced me to go see a private neurologist. 🙏
From Christmas through New Year's, I did nothing but sleep and run to appointments—X-rays, ultrasounds, you name it. Even riding an elevator or walking up stairs made my head throb, and I felt this intense pressure in my ears whenever I laid down. Even someone talking nearby would bother me; I’d have to rest my head and take deep breaths just to let the pain pass. Then, on January 3rd, they did an EEG and saw reduced brain activity. As soon as they called ten doctors into the office, I knew something was seriously wrong. The doctor managed to get me into the ER for a CT scan. I remember them being reluctant to do it because I looked "normal," and those scans aren't cheap. But once they saw the image... they just went quiet. They turned pale. The neurologist pulled me into a room and asked if I had any allergies. He explained I needed an MRI. I didn't have the slightest clue what that was or why I needed it.
In this tiny 2x2 meter room, he told me to sit down. His exact words were: "Look, Ms. C, this isn't good. You have a large brain tumor. Now, please change into this gown; we're going to do an MRI to see the extent of it." I sat there for a minute, paralyzed, and then I started undressing.
As I lay in the machine—which takes about thirty minutes and is incredibly loud while my head is absolutely splitting—my first thought was how perfectly logical it seemed that I had a brain tumor. I'm young, I've graduated college, I have my dream job, a family that loves me, wonderful friends, and a husband I adore. It felt too perfect to be true.
And then, I felt this sharp pang in my stomach. How was I supposed to tell them??
Personally, I don't care much about myself. But how do you tell the people you love that you might die? Believe me, setting aside the tumor and the life-or-death struggle, the absolute worst thing that can happen to you is seeing that kind of terror in the eyes of the people who mean everything to you.

Anyway, they admitted me to the hospital, gave me some space, and started treatment. A neurosurgeon (Sajko, who actually became a real friend later) from Vinogradska Hospital came to see me the next day to explain the situation and the plan. After moving around a bit, I ended up at Vinogradska where they operated on January 11th. They removed everything they could find. The MRI showed it was all clear. Recovery was fast, and I wasn't in any pain. By January 19th, I was already home celebrating my sister's birthday.😍

This isn't some heavy, emotional topic for me. I never cried, and honestly, I never once doubted that things would turn out okay. Every single doctor told me that my optimism and general zest for life accounted for about 90% of my recovery. I don't think I could have pulled through without the massive wave of love I felt from thousands of messages sent by everyone who knows me. I just felt this overwhelming surge of positive energy and affection.
I’m sharing this because I want you to understand what it’s actually like when you're sick. We hide the hair loss caused by chemo just so we don't depress the people we care about. It’s not because we're embarrassed or in denial; it’s just hard to look into someone's eyes and see nothing but pity and fear. So, if you know someone dealing with an illness, please offer them positivity and love instead of sympathy. People fighting these battles hate feeling like they're causing others to suffer.

Love you all 😘

Hey everyone, just checking in for a second. I’m doing alright, I guess. They switched up my chemo because I ended up having an allergic reaction to Temodal. I just finished the first of six cycles with this new regimen; it’s pretty intense, and each cycle drags on for about six weeks. The nausea is there, and my blood counts tend to drop, but nothing I can't handle, I suppose.

Anyway, I wanted to let you know I'm feeling okay and that I think of you all constantly. I haven't been posting much since things have been relatively stable. My next scan is coming up in January—it'll be one year since the surgery—so I'm just hoping everything turns out fine again. 😍

If you're fighting an illness, don't give up. And if someone you love is sick, please show them some compassion. That’s really all anyone needs when they're hurting—to feel loved when they can't even find any love for themselves.

Big hugs to everyone. 🙂

Kate Brooks2 said:Things are actually looking great here—maybe even too good given our diagnosis. His blood work is excellent... he’s eating like a horse, laughing, moving around, just full of energy like nothing is wrong. He even managed to gain 1.5 kg after losing so much weight at home. Of course, we’re thrilled and trying to keep it that way. We’ve stripped his diet down to the healthiest stuff possible, maybe making one exception a week if he really craves something. No fussing about it, and he drinks beet juice, Noni, teas... basically everything along with tons of fruit and veg. I just wanted to share this so you all don't give up; there might still be hope. Best wishes.

Bravo to all of you! 🎉

I'm fine, working and waiting for the next chemo cycle. My oncologist retired, so I have a new doctor now; we seem to get along well enough, I guess.
My blood counts dropped a bit, so we pushed back the next round of chemo at the hospital. Since I ran a fever and broke out in a rash last time, they want to keep a closer eye on me.
Anyway, I'm doing okay and everything will be just fine, probably..

Sending kisses and positive thoughts to everyone—hang in there..

Kate Brooks2 said:🤷Here, the temperature drops down to 36.8 during the day. We just use some Tylenol and vinegar in the evening. As night approaches, the fever starts climbing again, so we bring it back down, and it’s just a constant cycle. He eats and drinks normally, which makes the whole thing even more confusing, I guess. After the first cycle, we dealt with this same fever issue, and now it's happening again... maybe it'll settle down soon. Usually, it hovers around 99.3.

Mine hits 99.7. 🤷
I didn't bother checking the temperature during the first round of therapy, so I can't really compare...

Angela Wright said:That’s probably just a reaction you can manage with Voltaren. It's those fevers over 101.3 that won't budge that actually matter. Still, maybe ask the oncologist just to be safe. That's what they told me when Mom was on Temodar.

On my first day, I hit 102.2, but Voltaren knocked it down... The next day was 100.4, again handled by Voltaren. After that, it topped out at 99.7, and my doctor said there's no point even trying to break a fever like that since it's just the body fighting back.
The issue is my oncologist barely answers the phone, and honestly, he probably wouldn't bother dealing with this stuff over a call anyway. My hospital is all the way across town, and I can't get there until tomorrow—since that's his clinic day—by which time I'll likely be symptom-free. I finished my last chemo dose for this cycle today... I guess I'm just not sure what to do.😢

Angela Wright said:A fever over 101°F that won't budge even after taking Tylenol—especially while undergoing chemo—could signal an infection. It’s vital to get to the hospital immediately for antibiotics. If an infection takes hold, things could turn fatal fast.

One injection of Voltaren brought mine down... Now I'm hovering between 98.6 and 99.7... I guess maybe I still need antibiotics? I'm asking because my doctor doesn't seem to have a clue.🙂

Kate Brooks2 said:Everything seems fine on our end for now, but we just hit a fever of 102.2, exactly like yours. I have no idea if this is actually dangerous or what we should even do besides giving acetaminophen or maybe putting vinegar on the feet or something... Should we head to the ER?

Maybe the best move is to call 911 and ask... 🤷 I called around and eventually saw my primary care doctor, who barely even looked at me before saying it would pass. Apparently, it's just a normal reaction since the body is fighting back. Anyway, my temperature is sitting at 99.7 right now, and they told me not to break the fever until it hits 100.4 because the body needs to produce white blood cells...
You should probably call emergency services and ask what to do (just so dehydration doesn't set in or something). Good luck!

Kate Brooks2 said:We added a little bit of everything, I guess, and it actually worked. Last cycle, our white blood cell count plummeted from 6.4 down to a terrifying 0.6, but somehow we managed to pull them back up to 9.8 within about ten days. 🙂
She’s drinking Noni, some sort of juice blend—beet, carrot, lemon, apple, grapefruit—plus flaxseed oil and black cumin. There's native propolis, propolis mixed with honey and herbs, beta-glucan, ImmunoPower, even royal jelly (she takes that during her cycle too). She grinds up flax, black cumin, and pumpkin seeds to toss into soups, along with homemade bread and yogurt. Every day, she eats tons of fruit, mostly berries. We’ve loaded the diet with green veggies since they're supposedly the healthiest—spinach, peas, Brussels sprouts, broccoli, green beans... that sort of thing. Most of all, she loves thick soups made from all this stuff; we just throw a little bit of everything in a pot with onion and carrot, simmer it, season it lightly, then add ground seeds and some heavy cream and blend it. Even we started eating the soup because, I guess, it actually tastes good, though you wouldn't think so. 🙂

You really went all out on this—bravo. I guess hopefully things stay on track... maybe. 🙂

This new round of chemo is hitting me pretty hard, I guess. I've got this itchy rash all over my body—it's awful. I had it during the first round too, but it was way milder back then since I was on much higher doses of dexamethasone. On top of that, I'm running a fever of 102.2, so I'm just... 🙂
Maybe things will turn around. I guess it might get better. 😍

Kate Brooks2 said:I haven't been around for a few days. I guess you all really got talking. 🙂 It’s good to see some familiar faces coming back to offer support. Even better to hear that people like fadedtrucker5 are doing alright, I guess.
Kate James38, I imagine things are tough right now. Like most people, I guess you aren't exactly thrilled with the doctors either. We aren't exactly satisfied ourselves, but we're stuck depending on them, so if you can't beat them, you might as well just deal with it. My father-in-law went through a period where he was incredibly weak; he just couldn't be out chasing down doctors or hunting for info himself. My husband and I ended up knocking on every door we could find. We spent hours, sometimes even days, just waiting for calls or some kind of answer. That's just how it goes, I suppose. If you don't push for it yourself, nobody else is going to do it for you.
There are some truly decent people here, like Angela Wright and vividsailor7, who actually take the time to help us out. I guess I should say thanks for that. But you don't find this kind of kindness everywhere. Usually, you're just left on your own to fight the battles and do all the research.
As for us, things are stable. My brother-in-law is feeling great, actually—he even drove himself to get his blood work done today. His white blood cell count dropped again after the therapy, which is expected, I guess. But now...
Well, I guess we know we can get them back on their feet pretty quickly. 🙂 We're all just fighting this fight together, trying to maintain some semblance of a normal life—if you can even call it that. I guess I'm keeping my fingers crossed for everyone. Just listen to what these experts have to say, I suppose. Talk soon. 🙂

Well done. Truly impressive. 🙏
So glad everyone is doing well and that my father-in-law is feeling this good. It’s great news, I guess. Have you guys changed anything regarding his diet or treatment lately? Maybe?
Sending big, warm hugs to everyone. I guess. 🙂