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...
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??... 😢
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...
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?
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...
Angela Wright said:Kate James38, I’m traveling right now so I’m just tapping away on my phone. As soon as I can get to a laptop, I’ll give you a proper answer, either later tonight or tomorrow morning.
Thanks... hang in there everyone... ladies, guys... but seriously, I feel like I've hit a brick wall... and then today they tell me they can't even ship samples through Washington, D.C. 😢 I mean, honestly... it's pathetic. On paper, everything sounds like a masterpiece, but in reality, it's a total joke... like watching the Olympics😢
Sorry, fadedtrucker5, but what’s your actual diagnosis? I'm asking since you mentioned being on Temozolomide, and are you currently out in Washington, D.C.? We’ve already bounced between three different oncologists, and I actually have some intel on a fourth one too... I’m really glad to hear things are moving along with the Temozolomide 🙂 But honestly, I don't even know who to trust anymore... or where to turn... we just don't have the luxury of making any more wrong moves...
thanks for getting back to me so fast... So, here's the deal. After the MRI and SPECT scan on August 11th, we had the consultation. Dr. Miller said it isn't operable, and Dr. Keros backed him up on that. Neither of them even brought up Gamma Knife; they just recommended oncology treatment—specifically immediate radiation. We started that process down in Miami. There’s zero coordination between Miami and Washington, D.C., if you know what I mean...😢 I tried talking sense into them, but nobody's listening... Between the doctors here in Miami, the ones in Seattle, and the MD Anderson Cancer Center in D.C., they’re all saying no to Temozolomide—apparently, it's only used for glioblastoma, which is the only thing Medicare covers. We couldn't go with the Mayo Clinic because of the scheduling; they could get us in for radiation much faster here in Miami... and when you're in this position, every single minute counts. - Regarding the PhD findings, I actually have four (two from a Suburban neighborhood clinic, one from Mayo Clinic, and one from the center in Vienna—which was incredibly precise with the diagnosis). - However, I didn't realize at the time that I could actually influence the treatment plan by consulting with them directly. (Everything I'm saying is just based on what I've gathered; I'm obviously not a doctor, otherwise I might have known all this sooner 😢 but yeah... everything just feels like it's moving too slow anyway) - Is what I have enough for the folks in Vienna, or should I try using the info you provided? It seems really helpful! - I know that the specialist out on the Frontier sends samples abroad from the Mayo Clinic... he's the only one with official ties over in Europe... but since we aren't patients at Mayo, those doors are slammed shut right now. - And if things are being sent overseas, my experience tells me the hospital has to handle the shipping (I'll cover the costs), otherwise, it won't clear customs. Does anyone know how that works? - Also, how on earth do you book a consultation with Dr. Henry? I assume the waiting list is massive. - Same goes for the MRI/SPECT scans; if we don't go private to the Neighborhood, our next insurance approval isn't until February 2012 :P / Of course, I'm maxing out credit cards just to make sure I don't lose my brother.
I really need some advice here. We went through surgery on June 20th, 2011—right side frontal lobe. The final diagnosis came back as grade 2 oligoastrocytoma and grade 3 oligodendroglioma. 😢 We finally started radiation on August 29th, but the MR spectroscopy from eight months ago shows there’s still something there, specifically in the left temporal lobe and the corpus callosum, measuring about 5 mm. My question is, once the radiation is done, should we be looking to schedule a Gamma Knife procedure with Professor Henry over at the Mayo Clinic after repeating the MR spectroscopy? Or does he need to be cleared by a neurosurgeon first? Honestly, we’ve just been bouncing between hospitals constantly. We live in a suburban neighborhood, but since there isn't an oncology department nearby, we're currently stuck in Miami for the radiation. It's my younger brother we're dealing with, he's only 30. Also, what’s the typical protocol for getting chemo started? Is it usually standard stuff, or do they send samples out to specialized labs? (They don't handle it here in Miami, which is a huge headache because while Miami follows a standard drug protocol, the Mayo Clinic is mentioning Temozolomide... Please, if anyone can help me out... I’m reaching a breaking point because I don't trust anyone anymore. Between all this endless running around with a sick guy 😢 and the fact that radiation didn't even start until day 73—which is insane, since it usually starts within a month—I just want to get those samples sent off to a major institute somewhere else... if anyone knows how to make that happen, please... -any way you can help... 😢(