Support resources for families dealing with cancer and other serious illnesses

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.

fadedtrucker5 you doing okay now? 😘

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. 😍

fadedtrucker5 said:I’m doing great! 😘 Working, hanging out... just living life like anyone else. 😍 Had a headache for a couple of days which made me panic a little, even though it didn't feel like my old headaches. But people around me keep insisting their heads hurt too, even though they don't have my diagnosis... I obviously just ignore them. 🙂 I can't wait to get my next MRI just to be sure everything is fine. I think this will be my life from now on—always being on edge and questioning myself—wondering if my head hurts because of the weather or if I actually need to worry...

All in all, I'm good. I've got some jitters about the new chemo because I know how those first few days go (me and my friend playing the lead roles in a bathroom comedy), but it's just part of the process. 😍

Glad to see you're still staying so positive. 🙂 How many rounds of this new chemo do you have left?

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.. 🙂

SC- if you don't mind me asking, what was your actual diagnosis?
so they're suggesting Temozolomide?
it was the exact same story for us, but we’re down south where they won't even listen to the name of it (honestly, I’d pay out of pocket for it myself, no question)
and I'm a little lost on the treatment plan—was it a combo of radiation and chemo? How does that actually work, if you don't mind explaining?...
- because over here, they told us it would be one or the other, not both...

fadedtrucker5 Asks:
Six left to go. I did one round with radiation, now I’m on double doses, then a month off, followed by five rounds of triple doses with month-long breaks in between. Honestly, I don't know what to expect, and maybe it's better that way. Before my first chemo, I read up on the side effects of Temozol and I was absolutely terrified. But none of that actually happened. My hair fell out right where I had the radiation—which, in my case, means part of my head—but all my other hair stayed put since Temozol doesn't cause hair loss. 😉
Look, at the end of the day, it’s all about the people. Honestly, the way you have to navigate the healthcare system just to get Temozol is more exhausting than the actual chemotherapy itself. It’s infuriating. 🙂

I hear you loud and clear. 😢

I really hope you don't end up dealing with any nasty side effects or nausea right now. 😘

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 get it. Completely. 😢

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

I suppose I hope so too... 🙂

Ugh... we ended up heading down to San Diego because the doctors back home basically told us there was no point in waiting any longer to start radiation...
so that's why we're here. If you don't mind, could you shoot me a private message with the diagnosis? I'm trying to figure out if it’s related to what my brother went through...
So far, none of the oncologists have given us a straight answer, even though we've seen several people who suggested a combo approach—you know, doing the radiation, then the MRI, then the chemo...
Honestly, it just leaves me with so many questions spinning in my head... 😢
Please, if you can, DM me the diagnosis and the doctor's name... maybe someone like Miller, Thompson, Frontier... or Bean?

fadedtrucker5 said:Honestly, I'm doing great! 😘 Just working, hanging out... living life like anyone else. 😍 Had a headache for a couple of days which made me start panicking a bit, even though it didn't feel like the headaches I used to get. But people around me keep insisting they have headaches too, even without my diagnosis... Of course, I just ignore them. 🙂 I can't wait to get my next MRI just to be sure everything is okay. I think this is how it'll be 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 something I actually need to worry about...

But overall, I'm fine. A little nervous about the new chemo because I know exactly how those first few days go (me and my best friend basically becoming one with the toilet), but that's just part of the deal. 😍

Yeah, that's exactly it. My parents and I have been jumping at every little thing for 15 years now.
Whether it's just slightly swollen lymph nodes or anything else.
Though, in a way, it can almost be a relief to have something to focus on.😁
I just hate that waiting game and having a thousand questions racing through my head—especially the worst one: am I going to have to go through all of this all over again?

I'm just hoping the chemo goes smoothly and I don't get hit with any brutal side effects! 🙂

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.. 🙂

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.🙂

Props to you, fadedtrucker5, for trying to be reasonable..
but it’s just not okay.. dropping news about Elizabeth Perez33 on me like that.. mentioning Temozol.. and some professor from the Frontier.. that I actually spoke with.. and leaving it at that...
"not fear".. I don't know.. I guess you're probably younger than I am... but my brother is 30. In situations like this, every single bit of valid, helpful information is literally life or death... if you want to send that stuff over via DM, go ahead, because I'm not exactly going to be walking around town broadcasting it...
I wasn't asking for a million bucks, either...

fadedtrucker5 said:I know how you feel... Just not having to go back to the hospital again... That's what really broke me. If they try to hospitalize me again, I'll lose it. Everything else is just a minor inconvenience compared to that.😍
The chemo will pass too; it’s not that bad. When you're healthy, everything else feels much easier to
handle 😁

And thanks for following the blog, sending love!🙂

Yeah, just not the hospital... It's not that I'm scared of hospitals per se, but going back there means revisiting those early childhood days that should have been spent somewhere much better. No matter how proud I am of them, I never want to relive that, and I wouldn't wish that experience on any child or anyone else.
I truly admire everyone going through this. Most of all, I admire the kids who manage to stay smiling despite everything, walking through life later with their heads held high and full of pride (because they deserve it and they have to be). I also admire the strength of their parents.
I also admire people like Lili and her husband, who take care of her father-in-law and cherish every single day with him, just like how Kate James38 looks after her brother, tetaSlava cares for her dad, and m@m@ cares for her friend... all of you!

I admire you too, fadedtrucker5, because you've accepted your situation, you handle it, and you actually enjoy YOUR life. You're a wonderful woman, seriously. 🙂

I'm so glad that Jane Doe and drhrvoje take some of their time to offer professional advice here on the forum; it means a lot to people. Thank you both!

My heart goes out to everyone for whom this illness has taken their loved ones...

(I've been following the SC Blog for a while now, but I only realized today that I see you here too. The blog is 👍)

fadedtrucker5 said:I’m not comfortable posting a specific diagnosis on a public forum, but my oncologist did suggest Temozol...
Radiation therapy and Temozol chemo really need to be done in tandem; otherwise, the whole thing feels pointless. Basically, you take the Temozol on an empty stomach, and then you get the radiation done within an hour of that. You usually get a corticosteroid injection during the process too, though that's secondary to what we're discussing. In any case, I don't see the logic in doing radiation first and then starting Temozol later, but hey, I’m certainly no doctor, let alone an oncologist..
Regardless, my advice is to move the treatment process over to Washington, D.C., as soon as possible and just be a constant nuisance until they finally admit you. From what I can tell, being incredibly persistent is the only way to actually receive decent healthcare in this miserable country of ours.. 👎
To give you some perspective, while I was undergoing radiation at Mayo Clinic, there were easily twenty other people sitting in the waiting room every single day, and I was the only one from the D.C. area. There were people there from all over the United States, even from major cities like Seattle and San Diego.. What I'm trying to say is, the entire country seems to converge on Washington, D.C., where there are only two head radiation machines available—one at Mayo Clinic and the other at the Institute.. It's absolutely disgraceful..

That's interesting. ☕
Where are you getting that information?
In my experience, I didn't receive Temozol and radiation as a combined treatment plan, because I underwent radiation a full year after the tumor was first discovered, and I had the "pleasure" of taking the medication only when the first recurrence happened. If I recall correctly, my oncologist told me that once I finished that initial round of radiation, I wasn't allowed to undergo it again for another five years.

Kate James38 said:SC—if you don't mind me asking, what exactly was your diagnosis?
So they recommended Temodar to you?
We had a similar experience, but since we live down South, they won't even entertain the idea of using it here ( I wouldn't hesitate to pay for it myself, honestly ). Also, I’m a bit confused regarding the treatment plan—was it a combination of radiation and chemo? How does that work exactly? Please clarify if you don't mind.
- Around here, they told us it would be one followed by the other...

It definitely isn't cheap.
For me, this whole ordeal cost just under fifteen thousand dollars... and let me be blunt—it didn't help at all. 😢

feralridge3 said:It’s definitely not cheap...
I picked up that whole hobby thing for just under fifteen hundred bucks... and let me tell you right off the bat—it didn't do a damn thing for me... 😢

I know it’s a massive hit to the wallet, but honestly? I'm just grasping at straws here...
The only real struggle is trying to figure out what’s actually okay and what isn't...
So, I was looking through some old hospital records from back in the day...
And yet, even at three, they aren't...
I’m really torn here... I just can't decide which way to go...
My current oncologist won't even listen to a word about Temodar...
I’ve been digging through some international studies that were sent my way, and honestly, based on this diagnosis, we really should be getting access to Temodar here in the States too... But neither I nor the friend who forwarded me these papers—who happens to be a molecular biologist and has already gone over the cytogenetic results—would claim to be an expert in this specific field...
😢
I don't know... I'm just stuck on what to do next...

So, what makes you think it didn't work for you??... 😢

Alright, let’s clear the air here first.
Not every brain tumor is cut from the same cloth, which means treatment protocols vary wildly. Even when dealing with the exact same type of tumor, there's a massive difference between using a drug as a first-line defense versus a second-line option. Plus, you have to account for physician autonomy—doctors have the professional discretion to decide what works best for a specific patient's unique situation.
Regarding Temodar, clinical studies show it hits hardest when paired with radiation, but specifically for MF glioblastoma. While Temodar is FDA-approved and on the standard list for glioblastoma, it isn't registered for other types, like ganglioglioma. Getting a drug registered is a long, grueling marathon run by big pharma companies. Once they get approval for the indications that make them the most money, they rarely bother fighting the uphill battle for other uses, even if there are studies proving it works just as well, if not better. From what I’ve gathered through my contacts with oncologists we work with, it isn't registered for those other indications anywhere in the world. However, that doesn't mean the science isn't there. If studies confirm efficacy for a different indication, doctors can prescribe it "off-label." This is a completely standard and acceptable medical practice worldwide—in fact, that’s exactly what Kate James38 has already secured, and you should view that as a major advantage! In the US, Medicare typically only covers drugs that are officially registered for a specific indication.
The stuff you mentioned about them throwing death rates and side effects in your face? That’s nonsense. It’s just a way to deflect when they're backed into a corner. They don't want to take these cases to a formal review board because they don't want to be held accountable—they'd rather not have to pull funding for treatment out of their own meager hospital budgets. And sure, there are side effects, but they aren't any worse than what you'd see with any other chemo regimen.
In my opinion, the smartest move is to demand a written opinion from Rib regarding the treatment plan, as well as a second opinion from a top-tier global center, something like Dana Farber. Do your own research on the diagnosis; if you find a study confirming efficacy (and there definitely are), print everything out. Take that stack of papers to the clinic and put the pressure on. Don't hold back. Cite the standard practice of off-label usage.
If you still hit a wall after that and feel you need to take more decisive action, reach out to our association so we can map out a strategy.

Unfortunately, Temodar isn't some magic wand that guarantees permanent remission. When a relapse happens, it happens. That’s just the nature of this disease, and frankly, modern medicine hasn't found a definitive answer yet.

Angela Wright said:Alright, let’s clear some things up first.
Not every brain tumor is built the same way, which means treatment protocols vary wildly. Even when you're dealing with the exact same type of tumor, the approach changes depending on whether it’s the first line of defense or the second. Plus, there’s this thing called clinical autonomy—basically, doctors have the right to judge what works best for a specific patient's unique situation.
Regarding Temodar, studies show it hits hardest when used alongside radiation, specifically for MF glioblastoma. It's officially approved for glioblastoma and I think one other tumor type, which is where its registration lies. From what I’ve gathered from the oncologists we work with, it isn't registered for other indications anywhere in the world, but that doesn't mean there aren't studies proving it works for other things. In those cases, Temodar can be used "off-label," which is a totally standard and accepted practice in the medical community.
That stuff Kate James38 told you about—all that talk regarding deaths and side effects—is just nonsense they use to dodge uncomfortable conversations. They don't want to take the liability and get burned. And yeah, there are definitely side effects, but they aren't any worse than what you deal with during long-term chemo.
Honestly, the smartest move is to get a written opinion from a specialist like Dan Farber, or maybe seek a second opinion from another top-tier global center. Then, Google the diagnosis. If you find a study confirming effectiveness, print everything out, take it to the clinic where the treatment is happening, and really lean on them to make it happen.
If you still run into walls after that and decide you need to take the next step, reach out to our association so we can map out a plan together...

Thanks for putting in the work.
I actually have a written opinion regarding Temodar from the specialist, but the doctors in Miami won't acknowledge it...
sorry if I'm being a pain...