Hey, Tyler Rogers3, my story follows a pretty similar path to yours.
He’s still here, still fighting. Most days he’s exactly who he’s always been—brave, strong, and sharp as a tack—but physically, he's just failing him. He tries so hard to walk, but his body just won't cooperate anymore.
The bigger challenge right now, honestly, is my wife. She’s at a point where she's ready to jump into some kind of treatment because she's having such a difficult time coping with everything.
No. Up until yesterday, his bathroom habits were actually quite normal—urination and bowel movements were steady. But today, unfortunately, things have taken a turn for the worse. He hasn't been able to eat or drink anything at all; he’s strictly on IV fluids right now. We are doing everything in our power to make him comfortable alongside the nursing staff, but I find myself constantly searching for any small thing I might still be able to do for him. He is incredibly brave through all of this. Sometimes he’ll even crack a joke, asking us, "What did I ever do to you guys?" or checking in to see if we've eaten yet... Honestly, anyone following this thread knows exactly how heavy this feels.
So, today I had the Matrifen 25 patch—not a huge amount, but it wasn't really necessary at this stage—plus a Ketoral injection. This morning, I was given an IV of Medrol and Zofran. Last night, I also had the Medrol via IV. I’m currently sitting here debating whether I should try combining Dex with Mannitol tonight, or if I should just stick to Dex alone. I think I’ll just monitor how I'm feeling for a little while longer before making a decision.
I’m aware of Draskovic and Dr. Loncar. Thank you. I plan to follow up on Monday—I already have the referral ready—because things have truly spiraled out of control despite the anti-edema therapy we’ve been so carefully titrating (I even consulted with the oncologist yesterday just to double-check the titration protocol). It seems he stays stable for a few days on a new dose, only for things to take a turn for the worse again. I have some Matrifen on hand (though my experiences at the Vinogradska Clinic, and with the Vinogradska area in general, haven't been great), but he’s currently on the lowest possible dose since he hasn't really been in pain or needing it until now. I'll need to head in to get that dosage adjusted.
Truly, thank you all for your answers and for taking the time to help.
In the meantime, I managed to have a conversation with an incredibly kind, compassionate, and truly wonderful oncologist (we spoke through a connection—it’s honestly such a shame that you often need a "way in" just to get clear answers). She suggested that, given his specific situation, the primary care physician might be hesitating when prescribing the necessary treatment because they simply don't have all the clinical data from her side. She even mentioned that the doctor could potentially prescribe the Matrifen as well. Just before receiving this insight, the local clinic (or rather, their substitute staff since everyone is out on vacation) informed me that they aren't authorized to prescribe any medications without a specialist's approval, let alone adjust dosages.
Time is slipping away, and his condition is steadily declining while we're stuck playing this game of telephone with doctors passing around half-truths and incomplete information.
I’ve spent some time trying to dig through the legalities regarding palliative care laws here in the States, but I haven't come up with anything conclusive yet. To be honest, I hadn't even realized until now that this specific issue might not be clearly regulated. That said, I am absolutely going to do a deep dive into the Patient Bill of Rights to see what our options are.
Are oncologists actually obligated to provide care for a patient they’ve essentially turned away? I’m talking about cases where they decide further oncology treatment isn't indicated, yet there’s still a clear need to adjust the current therapy to manage symptoms—something they haven't bothered to do. If a patient is being left in limbo like this, what legal protections can they lean on? Specifically, under any US patient rights laws?
Thankfully, I’m not dealing with any pain, but the itching? It is absolutely maddening. It’s enough to drive a person up the wall. Is anyone else experiencing this constant itch, or is it just me? Also, has anyone here actually tried Pilex?