Posts by Kate James38

Brenda Jackson said:Unfortunately, here I am too, hanging out in this thread. It’s not like anyone comes here to brag, but sometimes you just need a kind word, some comfort... anything, really... even if it doesn't actually change the reality of things, unfortunately 😢

My mom had a stroke exactly one year ago, and thank God she survived it. Things were absolutely catastrophic. It hit the left side of her body, and for 20 days she couldn't walk normally... control her bladder... move an inch out of bed... of course, all of that dragged on for months while she worked to recover both physically and mentally. And honestly, all of us did too. But now... she's heading back to the hospital soon. They're doing a follow-up via a femoral artery catheter to get images of her brain again. It's dangerous, obviously. I'm terrified. We dealt with complications last year, and after they cleared her to go home, she suffered another stroke that very same night. Not at the hospital, but at home! Right after they let her go and told us everything was fine. We begged them to give us the blood thinners the doctor said she absolutely had to take every single day for three months, but the nurses wouldn't release the meds. And that's when it happened, that stroke right there at home 😢(
I don't think anyone can truly wrap their head around a shock like that. And don't even get me started on what it's been like for me, or the kind of pain we've endured.
The worst part is that she has to go back to the hospital now. I honestly don't know if I have the strength to go through the same nightmare again, or God forbid, something even worse. 😢
I feel so incredibly sad and lonely—lonely in that way where no one who hasn't lived through it can ever truly understand. It's a specific kind of ache... not to mention the constant dread of thinking my sister and I might also carry a hereditary condition—dilated brain aneurysms. So now you just live... you work, you study, you struggle... trying to exist alongside the fact that my mom could pass away any given day 😢( It's evil. My sister is only 15, and I'm not much older than that...
I really wouldn't wish our situation on anyone 😢 What kind of luck is this? What kind of fear? Mentally, I'm just done. Life has this way of just breaking you sooner or later, no matter how hard you try to fight it

Brenda Jackson, hang in there... having the same history doesn't mean you definitely have the same genetic predispositions. Don't spiral thinking about that right now; you can always get tested, both of you...
...what you're going through is just horrific... unfortunately, I know that feeling personally, and so do many others, which is why you're here... why we're all here for you... just try, in those moments when you can, to keep up with the little daily routines, just to distract yourself for a second... stay strong

Hey everyone... hope you're all hanging in there... and staying strong...
I really need some help here,
right now, Natulan-Prokarbozin is completely out of stock in the US, Canada, and Mexico. It’s been ordered from Germany,
but there's no way it's going to arrive in time for the chemo session currently underway,
so if anyone happens to have this medication on hand—I'd need 200mg, which is enough for two days—I'll pay you back, please...

Angela Wright said:It doesn't matter. I’d always choose the facility that offers better medication and, more importantly, one that doesn't deny my right to make my own decisions about my treatment based on solid medical reasoning.
And all that talk about how there are no issues and doors are always open...🤣...to hell with the Association, what was even the point of starting it then?

As for the doctor, I honestly thought that’s what it was all about. 🙄

I know it’s an issue, but since we were already accepted there, we should have the right 😉 to go back, I guess. I know it’s tough, but that’s exactly why we have the Association, and I’m just glad it exists.
-Going back to what I said before, if we hadn't had any choice in the matter, I would've been knocking on every door in every city trying to get a radiation appointment between July 25th and August 29th. When we finally got in with Tomislav Omrčen, I really have to hand it to him... he actually went out of his way for us and lent a hand. The Mayo Clinic was constantly lagging because everyone was basically on vacation in August... 🙂 summer vacation is sacred, I guess 🙂
-Getting the radiation done was the priority. Now we have to think about the next phase, which means actually doing something about it...

Angela Wright said:Seriously, can you please tell me which doctor thinks they can just ignore patient rights and decide on a course of treatment without even asking the patient first?

Tomislav Omrčen

It’s blindingly obvious what’s going on here. There is zero chance that someone working at the Mayo Clinic—someone who actually specialized in cases exactly like this and is probably one of the top two oncologists in the country dealing with rare tumors—is getting it wrong while the folks over at ST are right. It’s just impossible for the exact same diagnosis to be treated differently within the same country under the same healthcare system. I don't think you fully grasped how serious I was being when I suggested heading back to the city... once you start treatment at ST, it becomes a nightmare to pivot. Everything gets bogged down by the system...

I reckon they're from the same generation, too. They won't admit his findings are correct... but honestly, that's beside the point now...
we had to go to Miami because we couldn't afford to wait even one more day for radiation!! There was NO choice in the matter...
-- What does it matter now? Where would we even go?
-- They told us it wouldn't be an issue since the healthcare system is the same all across the country.
-If I have to, I'll show up and knock on their door and wait for hours... they won't just shut me out...

Angela Wright said:Honestly, I think you guys gave up way too early without doing your homework. If you’d just bothered to Google some studies, it’s blindingly obvious that for his diagnosis, Temodal is the gold standard for first-line treatment—provided you're dealing with doctors who actually care about patient outcomes rather than just guarding the hospital budget or Medicare funds.🙄 Even freaking Wikipedia backs this up with actual evidence: http://en.wikipedia.org/wiki/Oligodendroglioma
Says here:Because of the indolent nature of these tumors and the potential morbidity associated with neurosurgery, chemotherapy and radiation therapy, most neurooncologists will initially pursue a course of watchful waiting and treat patients symptomatically. Symptomatic treatment often includes The Use of anticonvulsants for seizures and steroids for brain swelling. PCV chemotherapy (Procarbazine, CCNU and Vincristine) has been shown to be effective and was the most commonly used chemotherapy regimen used for treating anaplastic oligodendrogliomas,[13] but is now being superseded by a newer drug: Temozolomide. Temozolomide is a common chemotherapeutic drug to which oligodendrogliomas appear to be quite sensitive. It is often used as a first line therapy, especially because of its relatively mild side effects when compared to other chemotherapeutic drugs.[14]
So, basically, they want to wreck a person's gut and stomach first, wait for them to have a miserable reaction, and then spend forever debating whether or not to act while the tumor just keeps growing... until they eventually decide it's not worth the trouble. That's the classic scenario right there.
This is honestly the worst possible mindset you could take. Your brother deserves the best available treatment, and that is Temodal. You need to fight tooth and nail to get him that because it is his right! He can't be expected to battle through bureaucratic red tape regarding treatment options right now—that's your job. You have to do it for him.

Whether you like it or not, he's an adult who is fully conscious, and as such, he has the right to make his own decisions about his life, whether that sits well with you or not. Try to put yourself in his shoes for a second. All you can really do is give him all the info so he actually has a choice to make.
As for those dietary supplements, there's no way any living human can digest that much stuff at once. Let him pick maybe two or three things max and stick to them. Shoving all that down his throat is going to do more harm than good.
Regarding everything you mentioned about patient rights and staying informed—you have to stand your ground against the doctors and demand it. Your rights are guaranteed under the Constitution, so print out copies of those and hand them to the physicians to look over, along with the studies proving Temodal's efficacy in cases like this and demand a written explanation if they insist on anything else.
And yeah, half the time it feels like you're just tilting at windmills. You knock one down and another one pops up, but there's no other way. That's just how it goes. Forget any illusions about a quick fix; it'll be easier if you go in knowing it's a grind.
You have to go full throttle. From experience, I can tell you that the more aggressive you are—especially when you show up armed with evidence and ways to make their lives difficult during election season (that's when they're most desperate to look good)—the more they'll fear and respect you.
Definitely reach out to the Association so we can see what we can do together. Don't throw in the towel right at the start!

Yeah, yeah, I hear you...
me too...
The doctors were basically useless...
I haven't given up, and I’m not about to. I printed out everything, gave them every single bit of data—three different studies... but he just told me he wasn't interested, and that was it. Period.
Honestly, this is more about convincing my brother... I'm going to send him a link to a clinic in Boston
They do specialized screening, and it should be wrapped up in about two weeks, once the shipment gets sent up there tomorrow...
So, we should probably aim to meet up north by early November.
To be real with you, I'm done messing around with these people. I don't feel like getting into a shouting match with some doctor just to get what we need. Fighting is exhausting and honestly just a waste of time; I'm not going to beg for care. I'm going where I'm actually welcomed.
I'm just waiting on this test result, then I'll check in once we're up there.
thanks

Angela Wright said:The issue isn't about having enough space for Hospice facilities. It’s way easier to just build a house or repurpose an existing facility—I mean, look at that new hospital over there being used as a warehouse instead of actually treating people.
The real headache is finding the actual staff to run them. Palliative care is its own specialized branch of medicine (distinct from preventative or curative fields). They only recently established a palliative care department at the medical school in Chicago, so we basically have zero specialists ready to step up right now. That goes for doctors, but it hits the medical technicians even harder, since they're the ones doing the heavy lifting with patients on the ground.
And honestly, you can't lump geriatrics in with palliative care. An elderly person reaching the natural end of a long life has completely different needs than someone fighting a terminal, aggressive disease.

Angela... maybe that’s why there’s such a massive push for caregivers at the Bureau... I mean, they seem to be taking in anyone who shows interest, regardless of their educational background. As long as they sign up for whatever course they're running through RK and pay the monthly tuition plus travel costs...
maybe that's how they're trying to manufacture a workforce... doesn't really matter what kind of profile these people have, because if you go by the psych tests, it looks like they'll take pretty much anyone :P

vividsailor7 said:That vomiting thing... it’s tied to both the physical stuff going on with his organs and his mental state.

I gotta say, it’s already been two weeks since my brother finished head radiation. The doctor told us we wouldn't see him again for six weeks—which honestly makes zero sense to me. Why wait six weeks if the standard window is supposed to be two to four? I don't get how our doctors make these calls, especially since my brother handled the radiation pretty well...
Anyway, chemo is next on the menu, specifically CCNU and Vincristine...
The other option isn't even officially on the table yet; it's just hanging there in mid-air...
-They basically told me this is the only viable path for brain tumors... hm...
🤷
To me, it feels like... we're just treating him however we can, with whatever we know, and then... well, we'll see what happens...
He's scheduled for an MRI, but our local clinic sent him out to some small town in the Midwest—anyone have experience with those places?
--I honestly think the only reliable, fast option is the Mayo Clinic...
-So there's really no other way... and I don't know how he or I am going to survive the waiting game while we wait for the results to come back... He knows more than he lets on, but he just denies everything... you can feel it in the way we talk...
I'm 😢 just completely exhausted by the system and everything else...
It's a constant battle against the healthcare system, and a battle within the family too... 😢 His issue right now is taking anything—milk, propolis, beta-glucan, turmeric oil, Tegretol... he's on Dex injections now... for another two weeks, at least. /Like he said, we won't know the full story until month four...
I know it sounds pathetic, but when you have to do it, you do it...
Sometimes I feel like I'm just tilting at windmills...
...When I suggested seeing a psychologist, he just told me I should go instead... 😢
I'd love to... if only I had the cash 😉 for all of it...
-We've had some nasty blowouts because he refuses to listen to certain things... or because he thinks the doctors aren't actually doing their jobs properly. A patient needs to be kept in the loop, but instead, it's always "this is for you," without any explanation of why...
-I need to get one more test done on my own initiative, and if it comes back positive, then I'm going to really lean on the insurance company 🤣 to make things happen...
..Honestly, I'd leave this country in a heartbeat if I could just find somewhere else to go...

feralridge3 said:Honestly guys, I was such a skeptic, but here we are. 😉
If you don't recall, back in May I had a brain MRI, and the results were pointing straight toward a recurrence. They even prescribed chemotherapy for me. Well, this past Friday, I paid for another scan, and the metabolites have shifted—it’s right there in black and white: no sign of any recurrence on the horizon.
I honestly don't even have the words to describe the sheer relief I felt when they told me those malignant cells had backed off. 🙂🙂

Man, it feels so good to hear news like that... 🙂🙂🙂🙂🙂

Angela Wright said:Give her a call; her husband actually went through with CyberKnife out abroad.

I'll do that, thanks... I just don't get why nobody thought to suggest that to my brother, especially since those other particles are under 0.5cm... hmm...

Also, what do you guys think about this article?

My brother's dealing with some weird symptoms lately.... at this point, I can't even tell what's normal and what isn't anymore...

Angela Wright said:I'm hoping there's still enough left for the Gamma Knife. If it's even an option, I think that could really help her out down the road...

What's considered small enough for Gamma Knife? Are we talking under 1cm, or even less than that?

Kate Brooks2 said:I haven't been around for a few days, but man, you guys really got talking without me... 🙂 It’s honestly good to see some of the old faces popping back up here to show some support. Even better, though, is hearing that people are actually doing alright... like fadedtrucker5 and the rest of them...
Kate James38, I get it. I really do. It’s heavy, and honestly, if you're feeling like the doctors aren't cutting it, you're probably not alone—most of us feel that way. We’re stuck depending on them whether we like it or not, so if we can't beat the system, I guess we just have to learn how to play the game... My father-in-law went through the exact same thing. There was a stretch where he was so weak he couldn't even dream of dragging himself from one hospital to another or hunting down info. My husband and I had to step up and knock on every single door we could find. We spent countless hours praying, waiting, and chasing down people just to get a straight answer or some kind of lead... It’s just the way it goes. If you don't roll up your sleeves and fight for it yourself, you can bet nobody else is going to do it for you...
You’ve got some truly incredible people in this group, like Angela Wright and vividsailor7, who actually take time out of their lives to help us out, and I really am grateful for that. But let's be real—you don't find that kind of kindness everywhere. Most of the time, you're just left on your own to fight the battles and figure everything out yourself...
As far as our situation goes, things are holding steady. My brother-in-law is actually feeling pretty great—he even headed out to get his blood work done on his own today. His white blood cell count took another dip after the therapy, which was expected, but at least now we know exactly how to get those numbers back up quickly... 🙂 We’re all in this fight together, just trying to scrape by and maintain some semblance of a normal life—if you can even call it that anymore. I'm keeping my fingers crossed for every single one of you. Just listen to what these smart, capable people have to say... hopefully we'll be talking again soon... 🙂

Hey there...

Yeah, I get it... honestly, I haven't even had a second to catch my breath before being accused of having a heart attack... :🙂 From July 25th through August 29th... it’s just been one thing after another. Between losing my job, leaving the kid with our parents, people knocking on the door at all hours, literal foot-stomping frustration... just endless waiting. We were basically living out of our phones, juggling international calls and running ourselves ragged between different cities across the US, bouncing from hospital to hospital and train station to train station, constantly calling, checking, praying. Dealing with nothing but empty promises while watching our parents try to hold it all together... it's heavy. It's their kid we're talking about—my only brother, my little brother...
And then there’s my own mess... dealing with the American legal system. Between guardianship issues, alimony, and all those other bureaucratic nightmares... I won't even get into the rest of it...
Well... only partially...
Hey... just dropping in to say hi...

Look, I’m sorry if I stepped on anyone's toes here...
Since when does someone have to be deathly ill just to earn the right to fight back?!?
If my brother doesn't have the strength left in him, and if he's just letting the doctors call all the shots... then someone has to step up and fight for him, and not just for his sake either...
This is just the reality of the world we live in today... and
you never know when it's going to be your turn...
- I'm not trying to lecture anyone, if that's how it's coming across, I was just saying I'm looking for HELP... which basically means I want to share anything I find if I think it might actually help the guy...
I feel bad that this is being taken as an attack, because that really wasn't my intention...

Look, I wish they’d actually stick to the Hippocratic Oath for once (instead of just going through the motions—Hippocrates has been dead a long time now)
- They aren't gods. They're just doing the job they picked out for themselves; nobody's forcing them... if they aren't there because they actually care about people, then they should just take off those white coats. As for titles? They don't mean much to me if the person behind them isn't human. At the end of the day, everyone makes their own choices...
- Let's not put them on Olympus... that's exactly why things are the way they are :P
- Fine, if he explained it, then whatever. I talked to him myself, and he didn't give me any real answers... or maybe he just didn't like my temperament and the fact that I was pushing for answers...

fadedtrucker5 said:I honestly don't get what the deal is here... I just don't follow the logic. One girl I used to hang out with back in Zadar was dealing with the exact same thing. So why is she able to get treatment out on the frontier while you're getting the runaround?... 🤷

I mean, there's no way I'm renting that apartment upstairs just so I have to trek up there twice a week because some gentleman needs to pick up paperwork...
Anyway... we're over here in Split getting through radiation treatments...
Anyway, I just slammed his door shut. Things were moving way too fast in Phoenix... so we ended up calling the whole thing off upstairs...
Wait, didn't you hear? They’re all incredibly arrogant... like, their egos are just massive... 🙂

None of this is even funny...

fadedtrucker5 said:Just do what I used to do... Every Tuesday and Thursday, you show up at the waiting room and beg the nurses to just slide your paperwork to the top of the pile... then you just sit there and wait. 🙄

Look, we're coming all the way from Zadar... we can't afford to keep driving back and forth to Chicago just to sit around and wait forever...

I haven't really heard of that medication before... As for you

http://www.ldninfo.org/

fadedtrucker5 said:Look, I'm 27. My diagnosis doesn't mean anything to you, and it’s certainly not going to help you out. It isn't the same thing your brother is dealing with, and it's not even in the same league, so please... just respect my decision...
Honestly, you’re better off just packing your bags, heading to the city, and knocking on every single door you can find—exactly like I did before things went south for me... 👍

Alright, no problem at all...
Honestly, when it comes to life here in the States, I feel like I’d have better luck getting an audience with the Pope than actually getting a meeting with certain professors around town...

Angela Wright said:Threaten them with journalists, patient advocacy groups, the media—you’ve gotta be assertive. But listen, you need everything I mentioned documented in black and white so you can demand straight answers. Tell him you get it, that the hospital budget is tight and they can't fund off-label treatments, but make it clear your family is ready to foot the bill yourselves. You have to stay on his toes; that’s just how guys like him operate. Show up every single day until they actually see you... be a total nuisance, there's really no other way.

Some pretty solid advice right there... 🙂

Angela Wright said:I just realized I misspoke earlier:
So Temodar is FDA-approved for MF glioblastoma and one other indication, but Medicare only covers it for glioblastoma.

Yeah, I get that... I just feel like we aren't going to get anywhere with the doctors in Los Angeles. They wouldn't even let me sit down with the head oncology director... they just don't recognize that kind of usage in their practice.
-It feels like I'm hitting a brick wall...
-I'll try to reach out to another clinic out of state on Monday to see if they can recommend anything.
-But then I have to start from scratch again—opening up the ribs (honestly, I'm not even sure how I'd go about that).
Because right now, I don't even know what the timeline looks like for starting chemo after radiation...
-All I know is that it's on the Medicare list for glioblastoma, but the oncologist who wrote it down for my brother said nobody claims it's a miracle cure, though he thinks it's worth a shot since younger patients are using it for grades 2 and 3.
-And why wouldn't they? It makes sense to me that it shows better results for grades 2 and 3, especially since they usually progress to grade 4 glioblastoma anyway...