Kate James38 said:It’s been two weeks since my brother finished his cranial radiation, and the doctor is telling us we won't see him for follow-up for another six weeks. I honestly don't get it. Why wait six weeks when the standard protocol usually calls for a check-in within two to four? What kind of math are these doctors actually doing when they make these assessments? Especially considering my brother handled the radiation remarkably well.
It’s mostly chemo—specifically a combination of CCNU and vincristine.
The second option isn't being recognized, so it’s just hanging there in limbo.
So, they told me this is the only viable good option left for brain tumors... hmm.
🤷
Honestly, I think you gave up way too early. You clearly didn't do your homework. If you actually bothered to Google the clinical studies, it would be painfully obvious that for a diagnosis like his, Temodal is the gold standard for first-line treatment. You should take that advice to doctors who actually focus on patient outcomes rather than acting like they're the gatekeepers of the hospital budget or Medicare.🙄 Even damn Wikipedia actually manages to provide text backed up by real evidence:
Oligodendroglioma is a specific type of primary brain tumor that originates from the oligodendrocytes—those specialized cells in the central nervous system responsible for producing myelin, the insulating sheath around our neurons. When these cells malfunction and begin uncontrolled growth, they form these tumors, which are classified as gliomas. From a clinical standpoint, these tumors are typically slow-growing compared to more aggressive malignancies like glioblastomas, but they still pose significant challenges. They are most frequently found in the cerebral hemispheres. One of the defining characteristics used by pathologists to identify them is the presence of a "fried egg" appearance under a microscope, caused by the way the cells are arranged and how they hold onto their internal structures. Genetic testing is absolutely critical for a proper diagnosis here. Specifically, doctors look for a specific mutation known as the IDH mutation and the co-deletion of chromosomes 1 and 6 (1p/19q codeletion). If a patient has that 1p/19q co-deletion, it’s a huge deal because it almost certainly confirms the diagnosis and generally indicates a much better prognosis and a better response to standard treatments. Treatment isn't one-size-fits-all; it depends heavily on the tumor's size, location, and genetic makeup. Often, the first line of defense is surgical resection—getting as much of the mass out as safely possible. Depending on what the surgeons can achieve, doctors might follow up with radiation therapy or chemotherapy, such as the regimen involving Temodal. In some cases, symptomatic treatment often includes The Use of anticonvulsants for seizures and steroids for brain swelling to manage the secondary effects of the tumor's presence.Kaže:
Since these tumors tend to grow slowly, and because surgery, chemo, and radiation all carry such heavy risks, most neuro-oncologists aren't going to jump straight into aggressive intervention. Instead, the standard move is usually "watchful waiting"—keeping a close eye on things while focusing on managing whatever symptoms pop up. In practice, this means symptomatic treatment often includes the use of anticonvulsants for seizures and steroids for brain swelling. When it does come time to hit it with chemo, the PCV regimen—a cocktail of Procarbazine, CCNU, and Vincristine—has proven itself effective and remains the go-to choice for tackling anaplastic oligodendrogliomas. However, there’s a newer player in the game that's largely taking over: Temozolomide. This stuff is a standard chemo option, and it turns out oligodendrogliomas are actually pretty sensitive to it. Most doctors go with it as the first line of defense, mainly because it doesn't hit you quite as hard as other chemo drugs tend to do.[14]It’s the classic playbook: first, you have to completely wreck a person’s nerves and stomach, leaving them in this state of total paralysis where they can't even react properly. Then comes the endless cycle of overthinking—endless deliberation, endless meetings, endless second-guessing about whether to pull the trigger or not. By the time everyone finally reaches a consensus, the tumor has already grown, and the inevitable conclusion is that it’s too late to bother. It’s a predictable, tragic script.
To me, it just looks like we’re doing whatever we can, using every tool in the shed... then we just have to sit back and see how it plays out.
That is easily the worst possible stance you could have taken.
Your brother deserves nothing less than the best treatment available, and that means getting him on Temodal. You have to fight tooth and nail to make sure he gets it because it is his absolute right. He’s in no position to be wrestling with bureaucratic red tape and deciding which medical protocols to follow right now—that’s your job. You need to step up and fight those battles for him. It’s blindingly obvious what’s happening here. There is absolutely no way that someone working at the Mayo Clinic—someone who literally holds a doctorate specializing in exactly these types of cases and is likely one of the top two oncologists in the country dealing with rare tumors—is getting the treatment wrong while the folks at ST are somehow right. It’s impossible for the exact same diagnosis to be handled 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 moving back to the city. Now that treatment has already kicked off at ST, making that move is becoming an absolute nightmare. Things have become systematically complicated.
He’s scheduled for an MRI, but our local clinic sent him over to a facility in rural Wisconsin—anyone have experience there?
--Honestly, I think the only reliable and fast option is Neuron..
-So there’s really no other choice... and I don't know how I'm going to survive the wait there while we wait for the results ...for him and for me... He knows quite a lot, but he refuses to face it and just denies everything... especially during our conversations..
I am 😢 and because of the system and everything else, I'm just done...
It's a constant battle with the healthcare system, and a battle within the family too... 😢 His issue is taking milk, propolis, beta-glucan, turmeric oil, Tegretol.. he's on dex injections now.. just two more weeks to go... /as he put it, we'll know everything in April....
I know it all sounds ridiculous, but when you have to, you have to...
Sometimes I feel like I'm just tilting at windmills...
...when I suggested seeing a psychologist, he basically told me to go by myself.. 😢
I would love to.. if only money wasn't such an issue 😉 for everything..
- We've had some nasty blowouts a few times because he won't even listen to certain things.. and then there's the fact that doctors don't always seem to be doing their jobs properly, and a patient actually needs to stay informed.. instead of this "it's best for you" attitude, but why?!
- I need to get one more test done on my own initiative, and then I'll really corner the insurance company 🤣 if it comes back positive...
..honestly, I’d leave this country in a heartbeat if I could find somewhere to go...
Whether you like it or not, he is a grown man who is fully conscious, and as such, he has the right to decide for himself what he wants and how he wants it, whether that sits well with you or not. Try putting yourself in his shoes. All you can do is provide him with all the information and give him the opportunity to choose.
As for dietary supplements, no living person can digest that many things at once. Let him pick a maximum of two or three items and stick to them from start to finish. This kind of constant pill-popping does more harm than good.
Regarding everything you mentioned about patient rights and being kept in the loop, you both need to stand up to the doctors clearly and loudly and insist on it. You can find patient rights guaranteed in the Constitution online, so print out several copies and hand them to the doctors to flip through, along with studies proving the effectiveness of Temodal in this specific case
and demand a written explanation as to why they are recommending something else instead of this.And yes, it often feels like fighting windmills; as soon as you knock one down, another one appears, but there's no other way, that's just how it goes. Forget any illusions about a quick fix to the problem right from the start; it'll be easier that way.
You have to go full throttle, and from experience, I tell you that the bigger you go—especially when you come prepared with evidence and ways to make their lives difficult during this election season (that's when they're most sensitive)—the more they will fear and respect you.
Be sure to reach out to the Association so we can see what we can do together, and don't give up right at the starting line!