Support resources for families dealing with cancer and other serious illnesses

I just realized I misspoke earlier:
So, Temodar is approved here in the States for both MF glioblastoma and one other indication, but Medicare only covers it for glioblastoma.

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...

Kate James38 said:I get that... I just don't think anything is going to come out of the hospital in Split regarding this. They wouldn't even let me sit down with the head oncology director. They simply don't recognize or accept this kind of off-label use in their practice here...
-it feels like I'm slamming my head against a brick wall...
-I'm going to try reaching out to another clinic out of state on Monday to see if they can offer any recommendations.
-but then I have to restart the whole process with the rib—honestly, I'm not even sure how I'd go about that.
Right now, I'm completely lost on the timeline for what comes after radiation before starting chemo.
-all I know is that it's covered by Medicare for glioblastoma, but the oncologist who wrote the prescription for my brother mentioned that while nobody calls it a miracle cure, it's worth a shot since younger patients with grade 2 and 3 tumors are taking it.
-And why wouldn't they? It makes total sense to me that it shows better results for grades 2 and 3, because if you don't catch it there, you're looking at grade 4 anyway.

You need to go loud. Bring in the journalists, patient advocacy groups, the news—you have to be assertive. But listen, you absolutely must have everything I listed in black and white so you can demand straight answers. Tell them you understand the hospital budget is tight and they can't fund off-label treatments, but make it clear that as a family, you are fully prepared to shoulder the costs yourselves. You have to stay on his toes; that’s just how guys like him operate. Show up every single day until they give you an audience. Be a persistent nuisance. There’s no other way.

feralridge3 said:Interesting. ☕
Where did you hear that?
I didn't get Temodar and radiation together. I was radiated a year before the tumor was even found, then had the privilege of taking the meds when the first relapse hit. If I recall correctly, my oncologist said I couldn't undergo more radiation for five years after the first round.

That’s what I was told about my own situation. I guess that's why I hate giving people advice based on my own experience; everyone feels the need to compare their case to someone else's, but every tumor is different—different location, size, malignancy, and so on.
I'm sorry you had such a rough time with Temodar, but so far, it seems to be working for me (or at least not making things worse).

Kate James38 said:Respect to you, SC, if you think this is fine..
but it isn't..throwing a scare in my face..mentioning Temodar..and that professor on the frontier..who I actually spoke with..and leaving it at that...
It's not about fear..I don't know..I guess you're just younger...but my brother is 30. In cases like this, every single bit of info matters, even if it's just a lead...if you send it via DM, I won't go around broadcasting it...
I wasn't asking for millions of dollars...

I'm 27. My diagnosis doesn't mean anything to you, it won't help you, it’s nothing like your brother's, and the grade isn't even the same, so please, just respect my decision.
It might be smarter to pack your bags for a major US city and knock on every door possible, just like I did before things got real. 👍

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... 🙂

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...

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

http://www.ldninfo.org/

Kate James38 said:Fine. No big deal.
As for being in the city, I guess you’d have better luck getting an audience with the Pope than with certain professors there...

Just do what I did. Every Tuesday and Thursday, show up at the waiting room and beg the nurses to put your paperwork at the bottom of the pile. And just wait. 🙄

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...

Kate James38 said:we're from Zadar... and I just can't make it all the way to Chicago... just waiting and waiting...

I don't really get what you mean by "tricks"... I guess. Some girl I used to hang out with was also from Zadar. Why is she able to see someone on the frontier while you aren't? 🤷

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...

Kate James38 said:I’m not moving into an apartment upstairs just to deal with some guy picking up paperwork twice a week...
And another thing... we're currently getting radiation therapy in Split...
Besides, I closed his door because Split was faster... so we canceled everything up there.
- And didn't you hear how arrogant they are? Like their egos are just massive.🙂

There's no point in arguing.

Look, I don't want to sound rude, but a lot of doctors have huge egos and a bit of a God complex. It's just reality—you need him, not the other way around, so if he's needed, you wait, just like me and everyone else. That "gentleman" handling the papers isn't a professor for nothing—that's why people come from all over the US to see him. Once he explained why he was recommending Temodar, I didn't have any more questions.👍

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...

Kate James38 said:Honestly, I wish they’d actually stick to the Hippocratic Oath for once (though they just go through the motions—I guess Hippocrates has been dead a long time)
- they aren't gods. They're just doing a job they picked... if they aren't there because they actually care about people, then maybe they should just drop the titles. Titles don't mean much if there's no humanity left. Everyone makes their own choices, I suppose...
- let's not put them on Olympus....that's why things are the way they are :P
- fine, if he explained it, whatever. I talked to him myself, and he didn't give me any answers... or maybe he just didn't like my temperament and the fact that I was demanding answers....

It’s obvious you aren’t sick. If you were, you wouldn't have all this "temperament"; you’d be smaller than a grain of sand, praying to God that someone would just give you a single minute of their time to explain something. Wishing you both luck with the rest of your treatment.. 👋

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...

Kate James38, trust me, we all get why you're so frustrated. I am too. Honestly, I think we’re all collectively fed up with this healthcare system of ours. It feels like if you have the cash or the right connections, you actually get decent treatment, while the rest of us just take whatever we're handed. Believe me, I've been bouncing from doctor to doctor for four years now. I've seen it all, and frankly, it makes me sick just thinking about the fact that I'll be trekking through hospitals and checkups for the rest of my life (I've got a few chronic issues myself).

Kate James38 said:I realize it’s an enormous expense, but I’m just grasping at straws here...
The real issue is trying to distinguish what actually works from what doesn't...
In one hospital stay, they were considered for...
and they weren't even considered in three others...
I am truly torn on which path to take...
My current oncologist won't even entertain the idea of T.
Now I'm looking through some international studies that were recommended to me, and apparently, for this specific diagnosis, Temodar should be administered here in the States as well... (though neither I nor the friend who sent me these studies—who happens to be a molecular biologist and reviewed the cytogenetic results—claimed to be an expert in this particular field)....
😢
I honestly don't know... what should I do?

How do you mean he didn't help you? / 😢

It didn't help because I'm right on the verge of a second recurrence.

Hey 🙂

I could really use some advice here:
I’ve been through the ringer myself with a nasty diagnosis (Non-Hodgkin—appendix, deep in the pelvis, bladder area), chemo, being bedridden for six months, sepsis from a poorly cleaned catheter, even clinical death. I totally get why people get so frustrated with our doctors; between the blatant money-grabbing, the arrogance, and nurses who act unprofessional or take their issues out on patients—though there are plenty of exceptions 🙂 (it's just the bad ones that stick in your mind). It’s been ten years since all that happened. Anyway, wishing you all a speedy recovery.

The thing is, a relative of mine has fallen ill. She isn't originally from around here, so I've been visiting a lot lately, trying to stay positive for her. She has uterine cancer that has spread to the colon—not a great spot—and she's undergoing radiation and chemo. But her mental state is just terrible 😢 I'm at a loss for how to help. She hasn't slept properly in three weeks, she’s depressed, and she’s basically preparing everyone for her death. She’s a middle-aged woman (53), so this isn't just some kid dealing with this. No matter how much I try to encourage her, she stays upbeat while I'm there, but the second I leave after an hour, it's the same dark talk again. I think maybe I've become a bit hardened because of what I went through, so I keep pointing out that getting worked up doesn't help the illness—it actually makes things worse. I was thinking about lending her an "optimistic" book about healing or something along those lines to give her something to focus on.
If anyone has any recommendations for a book or tips on how to "distract" her, I’d be super grateful, because I'm running out of ideas.

She’s acting like she’s already terminal (which she is, obviously, but there are much worse cases than hers). She won't get out of bed or even take a short walk, and she cries constantly (several times a day, ever since she found out a few months back). She can't sleep, and when her doctor mentioned seeing a psychiatrist, things got even worse. She started sobbing just at the mention of it—she's from a small town, so I think she has that mindset that only "crazy people" see a shrink. I don't know what else to do. It’s hard watching her destroy herself like this. There could actually be a good outcome, but if she keeps this up, she’s going to drag me down into depression too. 😢