Posts by fadedtrucker5

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.. 👋

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.👍

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? 🤷

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. 🙄

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. 👍

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).

Elizabeth Perez33 said:Yeah, precisely. My parents and I... we've been jumping at every little thing for 15 years now.
Whether it's just some swollen lymph nodes or whatever else.
Though, I suppose, there's a certain thrill to it, maybe. 😁
I just hate that waiting period. All those questions spinning in my head. And the worst one; do I really have to go through this all over again?

Hopefully the chemo goes smoothly and without any terrible side effects. 🙂

I know how you feel... Just not having to go back to the hospital... That broke me. If they hospitalize me again, I think I'd just wither away. Everything else is nothing compared to this.😍
The chemo will pass too, it isn't that bad... As long as I'm healthy, everything else is easier to
handle.😁

And thanks for following the blog.🙂

No, seriously, I’m not out here handing out diagnoses on this forum, whether it’s in public or via DM... And honestly, it doesn't even matter because every patient is different, and doctors just suggest whatever works best for the individual.
My oncologist is from the Frontier, and she wouldn't recommend Bean due to some personal issues.
In any case, I’d suggest Washington, D.C., because from what I hear, that's the only place where people actually get treated properly.. 🙂

melloworca6 said:I get it. Completely. 😢

Hopefully there aren't any nasty side effects or nausea right now. 😘

I suppose I hope so too... 🙂

Kate James38 said:SC—if you don't mind me asking, what was your diagnosis?
so they recommended Temozol?
it was the same for us, but we're down South where they won't even acknowledge it exists (I'd pay for it myself, honestly, no problem there)
and I'm just confused, did they do combined radiation and chemo? How does that work, if you don't mind explaining?
- they told us over here that it's one then the other...

I wouldn't put a diagnosis on a forum, but my oncologist suggested Temozol..
Radiation and Temozol chemo have to happen together, otherwise it's pointless. Basically, you take the Temozol on an empty stomach and get the radiation done within an hour. You get a corticosteroid injection in between, but that's probably not relevant. Anyway, I don't see the point in doing radiation first and then starting Temozol later, though I'm no doctor, let alone an oncologist..
In any case, I'd suggest moving the treatment to Washington, D.C. as soon as possible and being a total nuisance until they take you in, because clearly, that's the only way to actually get decent medical care in this pathetic country.. 👎
I mean, while I was getting radiation at the Mayo Clinic, there were always about 20 people in the waiting room, and I think I was the only one from Washington, D.C. There were people from all over America, even from big cities like Seattle and San Diego.. What I'm trying to say is, the whole US comes to Washington, D.C., which only has two head radiation machines—one at the Mayo Clinic and one at the Institute.. It's a disgrace..

melloworca6 said:I'm glad you're still staying so positive. 🙂 So, how many more rounds of this new chemo are you facing?

Six more. I had one round alongside radiation, now it's a double dose, then a month off, followed by five triple doses with month-long breaks in between. I don't know what to expect, though maybe it's better not to know. Before the first round, I read about the side effects of Temozolomide and was terrified... But none of that actually happened. My hair fell out where I had radiation—which in my case is my head, or part of it—but all my other hair stayed because Temozolomide doesn't cause hair loss.. 😉
I'm telling you, all of that is manageable for people. To me, just the way they handle getting Temozolomide and the whole way our healthcare system functions is much worse than the chemotherapy itself.. 🙂

melloworca6 said:fadedtrucker5 are you doing okay now? 😘

Oh, I'm just fine! 😘 Working, hanging out... basically living like any other normal person. 😍 Had a bit of a headache for a few days, so I started to panic a little, even though they aren't the same kind of headaches I used to get. People around me insist their heads hurt too, even though they don't have my diagnosis... I just ignore them, obviously. 🙂 I can't wait to get another MRI just to convince myself everything is actually alright. I suppose it'll be like this for the rest of my life—always being on edge and second-guessing myself—wondering if a headache is just a headache or if it's the weather or if I should actually worry...

But overall, I'm great. I've got some nerves about the new chemo because I know how those first few days go (me and my friend playing the lead roles in a tragic comedy), but I guess that's just part of life. 😍

Kate James38 said:Sorry, fadedtrucker5, what’s your diagnosis? Since you're on Temozolomide, I was wondering if you're in Washington, D.C....
We've seen at least 3 oncologists, and I even have info from a 4th...
I'm glad things are working with the Temozolomide 🙂
Honestly, I don't know who to trust anymore.. or where to turn... there's just no time left for wrong moves..

I don't have glioblastoma, but I bought Temozolomide. I assume that's what you're interested in.. It's all just so sad.. Sooo sad..
I am in Washington, D.C.

Reading all these stories about medical negligence... honestly, it makes me sick. I can't stop thinking about when I showed up at the ER with a headache so bad I was vomiting for five days straight—all because of a massive tumor and even worse edema—and they wouldn't even run a CT scan just because of the cost. 🙂
I suppose I just feel for anyone going through that kind of mess.. 😢

So, I saw my oncologist on Tuesday with my bloodwork. Everything looks fine, I guess, and I start my first of six rounds of Temozolomide monotherapy this Saturday. 👍 Since this treatment is twice as intense as the radiation therapy I had, I expect things to get much worse. I won't be working during those days; I'll take medical leave just to have a chance to recover.. 😉

Anyway, ever since I stopped the Dexamethasone, I've been sleeping like a baby.. 😍 Actually, I could probably fall asleep right now just leaning on my chin—trying to make up for that month where sleep wasn't an option..

I have two pieces of advice for everyone here—stay positive at all times and believe in your recovery. And if you suspect your doctor isn't doing everything possible for you—find someone who will. This is my third oncologist, and I've already sought out four different pathology opinions..

Kate Brooks2 said:It’s good you started working again; I guess getting back to your old routine is encouraging.
I'm just not really feeling those shakes yet... what can you tell me about them?

They're basically small protein shakes with a mild flavor that are super nutrient-dense. I suppose one would be enough since they act as a meal replacement, providing about 300-500 kcal each. There are various flavors, and they're mostly meant for people who are undernourished or can't handle solid food. It might be worth a try, I guess.👍

🙂

Kate Brooks2 said:Maybe I should update everyone on our situation... My brother-in-law feels pretty good, no nausea or pain or insomnia, but the appetite thing is still an issue. He tries, but he just can't swallow solid food—not that it hurts to swallow, his body just won't take it. He manages maybe 10 bites of solids a day, but he drinks plenty of beet, carrot, lemon, apple, and grapefruit juice. He’s also drinking Noni and orange-lemon lemonade and royal jelly (he likes the royal jelly best, though I worry he might be overdoing it). On top of that, he takes Propolis, Glucan, Selenium, Lana oil, and some vitamin/mineral pills with iron and iodine. We started giving him one glass of liquid nutrition daily yesterday because we're worried about weight loss. Looking at it all, I guess it isn't terrible since he gets what he needs, but without solids, his stools are just liquid and it's a struggle 😢 I read somewhere about a syrup that only a doctor can prescribe which supposedly works miracles for appetite. It's usually given to people with anorexia or those who
suffer from these nasty diseases and AIDS. If anyone knows anything about it, let me know... we need to do something about this. Our patient looks healthy but is just incredibly thin,
especially now that he's only 67 kg at 1.82 meters.

Maybe try Resource shakes? 🙂

Edit: Started working, so I can't get on the forum as much as I'd like!
Big hugs to everyone fighting and to those supporting someone who is. 😘
Praying for you all, you're in my thoughts and I'm sending hope and positive energy! <3

Kate Brooks2 said:As far as appetite goes, neither Multi Sanastol nor pikovit seems to help. 😢He eats just because he knows he has to, I guess. Though he drinks a lot since that’s easier. Beet juice, lemonade, Noni, various vitamins and minerals... it's all good, maybe, but it isn't slowing weight loss or providing any strength. Still, I suppose we're glad he's slightly better than a few days ago. We just keep fighting and trying to keep him entertained. He actually went outside today just to get some Air and walk around.

Bravo, I guess you deserve credit for how much you care. 🙏 Just keep going. 👍

Good morning, everyone. Just checking in from the coast to wish you all a decent day filled with some positivity and laughs. I guess we should be grateful we actually woke up today; remember, every day is a gift, not an obligation. Keep fighting, life is actually pretty beautiful. Sending love to you all, Nana.
🙂

Packing up for a beach trip, but I should probably mention that my blood work looks just like a healthy person's! 🎉 My glucose levels are even low, considering how much dex I'm on!
Platelets went from 109 up to 148, and everything else is within the normal range... White blood cell count is fine 😲 I guess my CBC is better than back home 🤣
Recovering slowly, I suppose. It seems these supplements I’m taking really are the right formula for immunity!

People, don't give up, just stay positive and keep pushing forward! And my apologies to the newcomers, I'm in a rush so I'm just checking in like this, but I'm praying for you all!
Heading off to enjoy myself now, 😘 everyone!

😢

Nobody wants to be a burden, especially not to the people they love most.
I suppose you just have to stay even tougher for his sake. You have to keep insisting that every single day gets better—that this is just a short episode, and soon he'll be back to doing what he loves. Does anyone happen to have any info regarding the possibility of a new surgery? 🙂

EDIT: I had blood work and a urine test done yesterday, so I should get the results today. 🙂 Thank God everything is fine. I feel great, actually, and I've started sleeping better (about 6 hours if I take a pill). My head was aching a bit yesterday, but it's about 100 degrees out there, so I guess I can't really complain. Today I feel wonderful. I'm looking forward to getting back to work; my next chemo starts on September 17th. 👍