Support for families dealing with cancer and other serious illnesses (Part II)

Hey >, just so you know, there's an oncologist over in Chicago who does chemo privately. It's pretty pricey, but yeah, just wanted to give you the heads up.

placiddrifter19 said:Thanks so much for the advice.

I was hoping maybe Avastin might be an option. The radiation oncologist says they can't target the lungs because the metastases are too widespread. My only remaining move might be to ask if Gamma Knife surgery is possible in the short term just to clear a path for chemo. As for seeking treatment abroad, honestly, I haven't had a chance to look into it yet. I was secretly hoping we wouldn't have to go that route, and frankly, I wouldn't even know where to start.
I don't know—did we have any options here in the States to take on chemo at our own expense and responsibility, and would any local oncologist actually sign off on that? To be honest, I didn't even know what "off-label" drugs were, let alone which ones might apply....

Thanks,

Best,

To undergo any kind of oncology treatment, a person needs to be in decent physical shape. Unfortunately, based on everything you’ve described, things aren't exactly leaning in that direction. I’m no doctor, but I think you absolutely need to seek out a second opinion. It’s purely to rule out the potential fallout an oncologist at a major hospital might face if they dare to prescribe an expensive therapy to a patient with advanced disease and a very uncertain prognosis... I hope you understand where I'm coming from. In our healthcare system, there's a lot of pragmatism involved; people tend to pinch pennies when it looks like a situation is sliding downhill.
It isn't just about taking personal responsibility; it’s about medical ethics and whether it’s clinically justifiable to give someone a treatment that, in a doctor's view, might cause more harm than good regarding their quality of life—which is always the number one priority. Don't get me wrong, I'm referring specifically to therapies like Sutent or Nexavar, which generally aren't used once brain metastases occur or if the patient suffers the kind of complications your dad is facing. Sometimes the benefit does outweigh the risks, and those cases are reviewed individually, where the patient signs off acknowledging the dangers. Still, the ultimate moral and ethical weight rests on the physician managing the case.
Regarding off-label use—that refers to using medications that are FDA-approved for one condition but have studies proving they work for other diagnoses. In those instances, a doctor can prescribe them if there is a legitimate, justified reason.
You won't get anywhere without a second opinion. Dr. Miller is solid; you can start with him, and he’ll give you his straight opinion on whether anything makes sense. Once you have that, take that perspective back to your primary oncologist and neurosurgeon to see if they agree and if that surgery can be moved up.

I am sending you so much strength and courage, but I also want to warn you: you might not get the answer you're desperately hoping for. Unfortunately, navigating life in these situations often means making those hard calls and accepting reality. You surely realize by now what this disease entails, and I'm sure you've already done your homework. Given his diagnosis and the available treatments, your dad has held up incredibly well for a long time—kudos to him for his grit, to the doctors for managing the treatment well, and to you all for being such a great support system. I hope he gets more quality time with you, whatever that looks like, even if it means pivoting to palliative care. If the curative specialists take that stance, please don't mistake it for giving up on him. It isn't.

Thank you so much
We are fully aware of the situation and the current circumstances, but honestly, finding the strength to surrender is proving quite difficult. We intend to seek a second opinion from Dr. Miller...

Gary Thomas13 said:They basically hit him in the head, which solved some issues—like his vision, I guess—but he’s still mostly out of it. He’ll be sweet and affectionate one minute, then acting totally drugged up the next. When he really snaps, he just rolls out of bed wanting to use the bathroom, and we have to help him, but then he wants to go right back to bed—and he does this like ten times in a row. There are moments when he’s almost lucid, but he constantly calls us by the wrong names—calling me by my brother's name, or calling my brother someone else entirely. We try telling him it isn't us, asking him to focus, and sometimes he recognizes us, sometimes he doesn't. We were actually at Mayo Clinic about ten days ago because they wanted to scan his hip to see if there was any change in his head or pelvis, but he just couldn't settle down—they failed six attempts over three days. They give him something to calm him down and he falls asleep, but as soon as they get him down to the CT scanner, he starts acting restless again.

I feel for you, truly. Especially those sudden "ideas" about needing the bathroom or whatever. We're basically on call 24/7 ourselves. By morning, I already know he'll probably have sat up and laid back down 10 or 20 times. It’s like he has no concept of time or even who we are—everything is just a blur to him. It looks like the new target might be the frontal lobe too, since the seizures have started.
He's supposed to go in for a CT tomorrow, but honestly, I think that mission is pretty much impossible :/.
(By the way—small cell lung cancer, metastases in the adrenal glands, brain, and starting in the liver)

Hang in there.

Yeah, I was with him all night—he was super restless, honestly just wore us both out. He’s barely sleeping, maybe thirty or forty minutes max before he's wide awake... and that's been the pattern for a while now. We got him a catheter set up today, so hopefully that helps since he’s struggling with urination. He can't really control it, but at the same time, he refuses to use a diaper because he’s terrified of them—so he just holds it until the absolute last second when it starts leaking anyway. What hurts the most is seeing him decline so fast every single day—like, his ability to answer basic questions or even follow what we're saying is just slipping away. Nobody has it easy, especially him, but honestly? Last night wasn't even about being tired... it was just gut-wrenching watching him struggle like that when there's nothing I can actually do to help. :+

@ Michelle Kelly4

Sad is cool, honestly

@ John Foster38 and Angela Wright

I want to express my deepest gratitude for all the advice provided. We have scheduled a consultation with Dr. Miller for this coming Monday, and we are waiting with bated breath to hear their professional opinion.

I find myself compelled to ask one further question. Given that Afinitor and Votrient were added to the Medicare coverage list just last month for the treatment of advanced kidney carcinoma—and assuming that perhaps no one in the States has even utilized them yet—do you happen to know if they are permitted for use in cases involving brain metastasis? I ask because I understand that Sutent and Nexevar are strictly contraindicated in such instances. Furthermore, our oncologist, whom we visited at the beginning of the week, ruled out Sutent, Nexevar, and Avstin as chemotherapy options, yet these two specific drugs were not even mentioned... which has left me wondering...

Thank you so very much

Hard to say for sure, placiddrifter19. You really need to run this by your doctor. It’s easy to throw words around on a forum like this, but none of us can actually give you the help you need... even though we all wish we could...

If my memory serves me right, drugs like Nexavar and Sutent can mess with the blood vessels in the brain, which might complicate things. You can verify this by digging through PubMed for published studies or just checking the manufacturer's own documentation.
Make sure you ask Dr. Miller about these newer medications. Honestly, you're the first person I've heard mention them. Regardless, if there's a valid medical indication, he'll recommend them—and once you have his professional opinion in hand, use it to push back against the oncologist at the hospital.

That is essentially my intended course of action. It appears that Sutent and Nexavar contribute to the destruction of blood vessels within the tumor, which can trigger bleeding. However, if I have correctly interpreted the information regarding these two newer medications, they actually function by blocking the specific protein necessary for tumor angiogenesis—the formation of those blood vessels. It seems to me that their mechanism of action is quite different from the former.

Thank you

feralsurfer72, how's your old man doing? Hope he's feeling even a little bit better.

Hey everyone,

It’s actually kind of tough for me to show up here on the forum—honestly, just skimming through your posts brings back all that uncertainty, fear, stress, and those endless questions that were keeping me up at night until very recently.

My dad passed away from esophageal cancer, and it happened way too fast.
It was basically a month from the initial diagnosis to him being gone. The disease just moved through him with this terrifying speed, day after day.
The doctors didn't give us any hope or even a fighting chance, so unfortunately, my dad is gone.

Just like all of you here, we didn't throw in the towel until the very last second. That’s why I really want to wish you all so much strength and grit—please, never give up!

Since conventional medicine wasn't offering us any real options or hope, I really wanted to look into some alternative solutions. But because my dad’s condition became so critical so quickly, we barely had time to try anything. So, I can't really sit here and tell you which specific methods or supplements work or don't work.

But, I did want to mention—if anyone here is already familiar with Graviola, I can help you get a hold of it for way cheaper than what they charge in the States.
See, I'm living in Indonesia right now, where 50 grams of Daun Sirsak (Graviola) costs literally $1.75. Meanwhile, I noticed that over in the US, people are paying as much as $67 for 100 grams.
So, yeah, if anyone wants me to mail some to you, we can make that happen. You’d just cover the cost of the Graviola and the shipping—I don't want anyone thinking I'm trying to turn a profit off this.
It honestly just breaks my heart seeing how much money people are forced to shell out for these things...

Anyway, I'm wishing you all nothing but luck, strength, and success in your fight.

Angela Wright said:If I recall correctly, Nexavar and Sutent can affect the blood vessels in the brain, which might complicate things. You can find published studies on PubMed or check the manufacturer's websites to confirm.
Make sure to ask Dr. Miller about these newer medications. Honestly, you're the first person I've heard mention them. If they are indicated for this case, he'll suggest them, and then you can take that recommendation straight to the hospital oncologist to push for it.

The new drugs on the high-cost specialty list are pazopanib (Votrient) and everolimus (Afinitor). Pazopanib is listed for first-line treatment of metastatic renal cell carcinoma—meaning it has the same indication as Sutent. Everolimus is typically used after Sutent for patients without brain metastases. As it stands, the patient doesn't qualify for either of these under their current insurance coverage.
By the way, I'm an oncologist.

Kate Wells44 said:The new drugs hitting the high-cost lists are pazopanib (Votrient) and everolimus (Afinitor). Pazopanib is indicated for first-line clear cell metastatic renal cell carcinoma—essentially the same use case as Sutent—while everolimus can be used following Sutent treatment in patients without brain metastases. As things stand, this patient doesn't qualify for either of these under current American insurance coverage or Medicare guidelines.
By the way, I’m an oncologist.

Finally! It took seven long years! 🙏
Don't you dare walk away now and leave this hanging 🙂

@placiddrifter19/">@@placiddrifter19
Don't forget that last sentence I dropped in my previous post to you... stay focused.

Kate Wells44 said:The newer drugs on the high-cost medication list include pazopanib (Votrient) and everolimus (Afinitor). Pazopanib is indicated for first-line treatment of metastatic renal cell carcinoma—essentially serving the same purpose as Sutent—while everolimus is typically used after a patient has finished Sutent, provided they don't have brain metastases. Consequently, at this specific moment, the patient does not qualify for either of these medications under Medicare coverage.
By the way, I am an oncologist.

Thank you so much for providing that clarification. Is it not utterly disheartening that despite the vast array of brilliant, cutting-edge drugs registered to combat kidney cancer, my father is unable to access even a single one? 😢

Thank you.

Linda Patel21 said:@feralsurfer72/">@@feralsurfer72, how is your dad doing? I really hope he's feeling even just a little bit better.

I didn't manage to check in sooner. After that emergency room visit last Sunday, the doctor from Mayo Clinic stopped by on Tuesday and told us to stick to just dressings—and some chamomile tea. There was fluid leaking everywhere, and we were constantly changing bandages... By Wednesday, he came back and changed course, telling us to use Rivanol instead. Then, around 5 p.m. while I was still at work, he hooked him up to an IV. (I scribbled down exactly what was in the bag somewhere, but I don't have it handy right now.)
I actually went into the clinic after my shift that evening for a quick "consultation," just so they could explain how to shut off the IV and safely remove the needle.
That night, I had to stay awake right by his side just to make sure he wouldn't accidentally pull it out in his sleep... The IV was barely dripping, maybe one drop every fifteen seconds. At one point around 10 p.m., it just stopped running entirely, and I felt completely lost. Luckily, I ran into a nurse who wasn't even involved in his case, and she was kind enough to come over and get everything sorted and reset. I ended up pulling a vigil until 5 in the morning.
The swelling in his legs has finally gone down, though the skin is quite dry and cracked now, peeling away in patches in certain spots.
We’re still waiting on the results from the pathology lab. I'll have to chase them down sometime next week.
As for me, I've been feeling utterly exhausted and low lately—just a complete collapse of energy while juggling way too many responsibilities. There have been several nights when, as I lay down, I’ve thought about how much easier it would be if I simply didn't have to wake up at all.
Hopefully, things will turn around soon.

feralsurfer72 said:Lately, I’ve been feeling absolutely drained and depressed—my energy levels have completely bottomed out, and my to-do list is just relentless. There have been several nights where, as I'm lying there, I’ve honestly thought about how much easier it would be if I just didn't wake up at all.
I guess things will eventually turn around.

Hang in there. Honestly, even my own husband and kids push me to that edge sometimes, so I can only imagine what you're dealing with right now, but you just have to pull yourself together and keep pushing.
You handled that whole situation with the nurse pretty well.
And let's face it, we're pretty screwed when you try to get medical help in this country at 3 p.m. 😢

feralsurfer72, I feel you. Honestly, I don't even know what to say—it sucks that you're basically on your own through this. Just try to get some sleep before you crash and get sick too. Hang in there! Your dad has to be incredibly proud of you. Wishing you guys nothing but the best in this fight. And man, our healthcare system is a total joke, honestly, thank God for the rare exceptions.

feralsurfer72, brisklynx51, placiddrifter19, cosmiclynx14... how’s everyone doing? Anything new on your ends?

Things are pretty brutal over here lately. My dad is in constant pain, so he’s on Tramadol. He’s a bit disoriented, his blood pressure is bottoming out, and he’s basically stuck in bed most of the time.

We’re just waiting on the call from the oncology department for the next check-up and a plan of action, but honestly, based on how things went last time, we aren't holding our breath. Because of his overall condition and some bad kidney results, the doctor didn't extend his chemo. His general health is just much worse now, and we're seeing improvements inch by agonizing inch.

He can barely eat anything—maybe three tiny meals a day plus some Ensure. We haven't even managed a walk in three days, and before that, "walking" was maybe ten steps before he had to sit back down.

In the meantime, we've ended up in the ER three times because he was struggling to breathe. Last time, they had to drain fluid from his abdomen, though thankfully there was way less than the last time, which was nearly two months ago.

He got those pain patches yesterday, but since the Tramadol is still doing the job, we just set them aside for now.

All in all, it's just grim.

And me... God, I'm just screaming and tearing myself apart inside. I’m helping my mom and spending every spare second with Dad. I massage him, we watch TV when he's up for it, we talk when he can... we even manage a laugh here and there... but I spend every single moment away from him just weeping. I can't pull myself together. I do everything I need to do like some kind of robot—I don't fail at the tasks—but inside, I am completely falling apart. This helplessness is just killing us.

@feralsurfer72/">@@feralsurfer72 🙂 I feel what you said in your last post so deeply. It’ll get better...