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

The mods asked me to kick off this second part because the original thread hit the 10,000-post ceiling—that's the admin limit before a thread gets locked down. Everything from the old thread is still here and readable; we’re just moving the conversation over here to keep the momentum going.

Here are the links to the first and last pages of the previous thread.

I want to take a quick moment to look back at where we started.

When I first pulled this together, I was in a truly dark place. I wasn't looking for answers so much as I was just drowning in my own desperation. I held onto this idea that if you put good energy out into the universe, God will return it tenfold, and I was praying He would pull me through my situation. And honestly? He did. This thread has brought a lot of good things into my life personally. Sure, some of those "big wins" ended up being massive disappointments, but I never wanted to stop writing here. It’s become a ritual for me. I still believe that helping others is a way to invite divine help for myself, but more importantly, this has become my way of finding some kind of higher purpose in all the chaos my mother and I had to endure together.

501 pages, 10,014 posts, and 1,338,026 views. Those aren't just statistics; they represent a mountain of grief, agony, and despair, but also a massive amount of insight, comfort, and healing. When I started this, I had no clue these numbers would grow like this, nor did I realize how many fundamentally devastating life struggles were hidden behind them. After seven years on this thread, I’ve gained an incredible amount of experience and wisdom. One thing I've learned is that if we don't pass our knowledge along—regardless of whether our own stories end in success or failure—we won't see any real progress. These numbers will just keep climbing because the world is getting older and more fragile by the day.
With that in mind, I’m asking everyone who posts: please come back once you've navigated your own crisis and help someone else navigate theirs. You don't have to be a fanatic like me, but think of it as a tribute—a way to honor the suffering of your loved ones or your own struggle. For those who lost their battles, it honors their souls; for those who made it through, let it be an act of gratitude. Personally, it gives me an incredibly powerful sense of fulfillment that I’d recommend to anyone. 😉

Let's get to it. 🙂

I just wanted to take a moment to say thanks again for all the support and the info shared here. My dad passed away about three months ago, and honestly, once the fight to save him was over, it turned into this internal struggle—just trying to wrap my head around the fact that he’s really gone. But, I guess that’s a whole different conversation.
Thanks to the encouragement in this thread, we’ve done our absolute best to navigate everything, basically learning as we go just to do what we could. And now, as hard as it is, we’re just pushing forward. I really owe a huge thank you to Angela Wright for everything!
I truly hope everyone else can keep their heads up and find the strength to carry on—that’s what matters most for the ones we love.

Just one more small detail, though it carries a lot of weight for me. This second part of the thread was started yesterday—the very day my mother would have been celebrating her 63rd birthday, if she were still with us.

Angela Wright said:Just one more little thing that hits home for me—this second part of the thread actually started yesterday, which would have been my mom's 63rd birthday if she were still with us.

🙂 I’m so sorry—that sounds like such a heavy day for you.

Thanks so much for getting back to me. My dad is the one who’ll ultimately make the call once the surgeon lays everything out for him this Tuesday.

From what we can tell by the test results, his heart seems to be doing okay. That drop in his overall strength is mostly coming from anemia—it looks like the tumor is bleeding, either intermittently or just constantly. 😢

It’s tough, really... but we're just taking it one day at a time. There isn't much else we can do.

Given the opening post and how many of us have had such heavy experiences fighting this brutal disease, I wanted to share some positive stories and success cases. My own father didn't get the chance to try any alternative treatments; he lost his battle before he could even start, passing away just a month after his lung cancer diagnosis. Since losing him, I’ve made it my mission to help anyone facing this illness—whether through advice or sharing links. I spent countless hours Googling and searching for answers, collecting a mountain of information that actually taught me quite a bit. This might be slightly off-topic for this subforum, but I think every single experience, especially the good ones, provides hope and strength to those still in the fight. So, here are three firsthand accounts from patients I stay in regular contact with...

A lung cancer patient was sent home with a recommendation for palliative care. He wasn't eating, couldn't get out of bed, had lost his voice, couldn't move his left arm, and was completely disoriented. After one month of taking Paw Paw, his condition stabilized with slight improvements. After two months on Paw Paw, his voice has almost fully returned, he uses his left arm nearly normally, he's walking, eating, has an appetite, and feels great...
A patient with lung adenocarcinoma had surgery several years ago and went through chemo. Then the cancer returned with metastases. After one month of taking Paw Paw, a man who had been bedridden was out shoveling snow in front of his house for three hours...
A breast cancer patient was considered inoperable due to the size of the tumor, and her chemotherapy had to be stopped because it severely impacted her heart function. After a month and a half of taking Paw Paw, the tumor shrank by a few millimeters. After two months, some of her markers are within the normal range, though others remain slightly elevated. They are waiting on more test results to assess the tumor's status, but she feels wonderful...
All of these patients took Paw Paw alongside cow's milk cheese with flaxseed oil and flaxseeds, while cutting sugar, meat, and flour from their diets and sticking to an alkaline diet.
I hope these results offer some hope to those suffering, and good luck to everyone in their struggle!! I read something on one of the links that felt very true: cancer is far too serious and heavy a burden to rely on just one method of treatment. Anything you feel might help, give it a shot!! 🙂

Grade 2 Oligoastrocytoma... Doctors say surgery isn't an option here, so they're recommending radiation instead. Does anyone have any experience with this?

restlessowl3 said:Oligodendroglioma, grade 2... Non-surgical, radiation recommended. Anyone have experience with this?

We’re looking at a slow-growing brain tumor here, but the catch is it can eventually morph into an anaplastic type that grows much faster. It’s a real shame it isn't operable, but at this stage, radiation and chemo are pretty much the gold standard options left on the table. If I were in your shoes, I’d push for a second opinion from a top-tier neurosurgeon, maybe someone over at Mayo Clinic. Because honestly, if Paladino says surgery isn't an option, then you've likely hit a dead end.

Angela Wright said:It’s a slow-growing brain tumor, but it can eventually progress into an anaplastic type that spreads much faster. It’s a shame surgery isn't an option right now, but radiation and chemo are really the best bets here. If I were in your shoes, I’d try to get a second opinion from a neurosurgeon over at Mayo Clinic. If Paladino says it won't work, then it probably won't.

We saw Dr. Darkness, but that was before they installed the new MRI machine. As soon as he realized how bad Mom's condition was, he basically said the whole thing comes down to whether she's even a candidate for surgery. Honestly, his bedside manner was a total disaster compared to last year. So, I’m going to respect her wishes and stick with the doctor who successfully operated on her twice back at Mount Sinai. But thanks for the input. 😘

restlessowl3 said:We saw Dr. Darkness, but that was before they installed the new MRI machine. As soon as he realized Mom was in such bad shape, he told us the real question isn't just about the surgery itself, but whether she can even handle it. Honestly, his bedside manner was a total disaster compared to last year. So, I’m going to stick to what Mom wants and follow the advice of the surgeon who actually performed her two previous operations at Mount Sinai. But thanks for the input anyway. 😘

It's likely the edema causing the issue. What's her daily dosage of dexamethasone? If the swelling is the only thing standing in the way of surgery, then aggressive anti-edema therapy should be able to stabilize her and get her physical condition back to a manageable level. Besides, with people dealing with brain tumors, those intense Southern heatwaves can literally push them into a pre-comatose state because of the massive blood pressure swings. I remember my own mother so clearly—we could practically sense a weather shift coming just by looking at how she was doing. Back then, we'd preemptively bump her dex dose up by maybe 2 mg just to help her ride out those rough patches more easily.

It’s been a while since I’ve actually posted anything—I still lurk here constantly, though. Honestly, reading through these threads helped me more than I can say when we first hit the wall with my dad’s diagnosis.

For those who haven't been following along, Dad has occult microcellular cancer. His lungs are completely clear, but he has metastases in his liver and bones. It was all caught by accident during an abdominal ultrasound back in the fifth month of last year. We got a biopsy done toward the end of the sixth month, and that’s when he officially started chemo using the PE protocol.

He just finished his eighth cycle this week. After the first six cycles, a follow-up CT scan actually showed some regression in the liver metastases and some bone repair, which felt like a huge win. That said, there are still quite a few lesions in the liver, so we’re sticking with the chemo for now.

The best part? He’s handling it incredibly well. No major side effects to speak of—he takes Ondansetron for the nausea, so he feels a little queasy but doesn't actually throw up. He’s eating everything in sight and is actually gaining weight now (he’s up about 20 pounds after having dropped 65). He even drives himself down to Washington, D.C. for his appointments. My dad is just such a fighter, seriously. 🙂

We finally took him off the pain patches this week since he isn't in any pain anymore. He dealt with a bit of a withdrawal phase for a couple of days, but he's over that hump now.

Looking back at where we started—after the initial shock, being told he had maybe a month to live, and getting discharged from the hospital to home palliative care—it’s wild. We pushed for a second opinion, finally got him started on chemo, and now he’s been fighting hard for eight months straight.

He stays positive through it all. Every single day, he goes for an hour-long walk, or he’ll play soccer with his brother in the living room using a tiny ball—he even goes for light jogs in the woods. We’re staying positive right alongside him, just hoping this stability lasts as long as possible.

If I can tell anyone anything, it’s this: just stay brave. Don't ever stop fighting for the people you love. Like someone once told me, as long as there's breath in your lungs, there's hope.

Sending love to everyone. :*

Angela Wright said:It’s likely the edema causing the issue. How much Dexa is she on daily? If the swelling is the only thing holding them back from surgery, some solid anti-edema therapy should stabilize her enough to get her in better shape overall. Honestly, with those intense Southern heatwaves, patients with brain tumors can drift into a pre-comatose state just from the pressure shifts. I remember my own mom clearly; we could tell when the weather was about to turn based on how she felt. Back then, we’d proactively bump her Dexa up by maybe 2 mg just to help her weather the change.

She’s on 4 mg of Dexa. She had that for a month, but since yesterday, they switched her to Medrol—two 32 mg tablets. They won't operate because the tumor is massive, plus she’s dealing with diarrhea and now there's a tumor cyst involved. What really eats at me is that despite all the Dexa, her condition hasn't actually improved. There isn't anything I can do for her; her left arm and leg aren't working at all.

Angela Wright😘 for all the kind advice shared here. I check this thread constantly just to read. Sadly, my dad lost his battle two and a half months ago.
From the moment he was diagnosed through our entire struggle, I was always here reading, though I rarely posted anything. I think I just needed time to process everything—to truly wrap my head around it all and accept it.
I’m sure there are others out there feeling just like me: dropping in, reading, searching for comfort or advice. We who still have the strength should—and honestly, we owe it to others—share what we believe might help someone else navigating this.

Here is the first piece of advice from our experience, something that truly helped my dad, myself, and our whole family:
We stayed positive. We talked about the diagnosis openly; Dad didn't hide anything, and neither did we. Even with the timeline from diagnosis to his passing, we had over a year filled with genuine joy. We never gave up until the very end. And even though there were metastases, he had a beautiful year with us, and we with him. He wasn't in pain. In his case, the 10-day radiation cycles and Temodal provided the best possible results. If anyone has questions regarding anything I mentioned, or specifically about a glioblastoma diagnosis, please reach out. I am here for you.

Wishing you all the very best.

silvercanyon7 said:Angela Wright😘 thanks everyone for the kind advice. I check this thread constantly just to read. Sadly, my dad lost his battle about two and a half months ago.
From the moment he got diagnosed through the whole fight, I was here reading all the time—just rarely ever posting anything. Honestly, I think I just needed the space to process everything and let it sink in.
I bet there are others feeling just like me: popping in, reading, looking for some comfort or advice. Those of us who actually have the strength right now, we owe it to each other to share whatever we think might help someone else out.

Here’s the first bit of advice from what we did—it really helped him, me, and honestly, all of us:
We stayed positive. We talked about the diagnosis openly; Dad didn't hide anything, and neither did we. Even after the diagnosis until the very end, we had over a year filled with actual joy. We didn't give up until the last second. And even though there were metastases involved, he had a beautiful year with us, and we had one with him. He wasn't in pain, either—the 10-day radiation and Temozolomide gave him the best results possible in his case. If anyone has questions about anything I mentioned, or about a NET diagnosis, just reach out. I'm here.

Wishing you all the very best.

I'm also a constant reader here (rarely post), and it gives me a sense of security and peace with how things are going.
My dad was diagnosed with Glioblastoma about six months ago. Dr. Hugh operated on him immediately and everything went smoothly. They removed part of the tumor, and by month 11, Dad started radiation and Temozolomide. No side effects so far—he walks at least 5-6 hours a day and sleeps like a baby. Since the tumor is near his speech center, talking is a struggle, but other than that, nothing. No pain, nothing. I'm trying to stay positive without losing touch with reality, you know? :/

restlessowl3 said:She had 4 mg of Dex, which she took for a month, but since yesterday she’s been on Methylprednisolone—two 32 mg tablets. They aren't going to operate because the tumor is massive, and now there's swelling and a tumor cyst. What's killing me is that her condition hasn't improved at all despite the Dex. There's nothing she can do herself; her left arm and leg are completely non-functional.

I actually looked into getting Methylprednisolone for my own mother because it seemed easier to manage the pill count than dealing with Dex, but her oncologist made it very clear that Methylprednisolone isn't an adequate anti-edema therapy for brain tumors—and I verified that with two other medical professionals. As for that 4 mg dose of Dex you mentioned, when the overall situation is already unstable, that dose is just way too low.
If I were in your shoes, I’d be asking serious questions about that anti-edema treatment and seeking a second opinion. Do it immediately, because if that edema spirals out of control, it becomes a nightmare to manage!
Also, she absolutely has to take Pepcid or Ranitidine for her stomach, otherwise those steroids will tear her stomach lining apart. Is she taking any anti-epileptics?

Angela Wright said:I was actually looking into getting Methylprednisolone for my mom because it seemed easier to give her the pill form rather than dealing with Dex, but her oncologist explained that Methylprednisolone isn't an adequate anti-edema therapy for brain tumors. I even double-checked that with two other specialists. As for that 4 mg dose of Dex, honestly, things look shaky—that dose seems way too low.
If I were you, I’d really dig into those anti-edema options and get a second opinion. Do it as soon as possible, because if that edema starts spiraling out of control, it’s going to be incredibly hard to manage!
Also, she absolutely needs to be taking Pepcid or Ranitidine for her stomach, because steroids will wreck it. Is she on any anti-epileptics?

She started Tegretol today. That Dex dose was prescribed at the emergency room at St. Jude's and then confirmed over at Mercy Hospital. Though, if you ask me, it feels like things were already starting to spiral. Was she doing okay after ten days on Dex before she took a turn for the worse again? I’m feeling a bit lost, honestly; they practically kicked me out of Mercy twice. Tomorrow, I have to meet with Dr. Radic at the medical center to finalize the radiation schedule.

And it’s on Pantoprazole, too.

restlessowl3 said:She’s switched over to Tegretol starting today, but they prescribed that dose of Dexamethasone at the ER, and then the doctors at the local hospital confirmed it. Honestly, it feels like things have just spiraled out of control lately. Did she actually feel better after those ten days on Dex before things started sliding downhill again? I’m at a total loss for where to turn, especially since the hospital practically kicked us out twice. Tomorrow, I have to meet with Jason Radic at the clinic to sort out the radiation schedule.

Jason Radic is a solid doctor. Just tell her you’ve been looking into it and heard from several sources that Methylprednisolone isn't really the best move for brain tumors. Ask her specifically for the Dex instead—mention how much better Mom responded to it. I’m willing to bet she’ll write the prescription if you push for it.

Wait, isn't it Dr. Radic over at the vineyard, the husband (if I recall correctly) of Dr. Radic from Mercury?

neonheron32 said:Isn't it Dr. Radic at the Vineyard hospital—the husband (I think) of Dr. Radic from Mercury?

I have no clue who you're talking about, but I'm referring to Dr. Jason Radic, the oncologist over at the Vineyard. I actually worked alongside her during my time with the association, and she is a genuinely wonderful person.

I can't quite recall the doctor's exact name, but Dr. Radic over at Mercury handled my grandfather's care for a while back when he was dealing with immune thrombocytopenia and gammaglobulinemia. She actually sent him over to see Dr. Radic—I think they're married—at the local hospital because she suspected some kind of brain growth. Thankfully, it turned out to be nothing. Anyway, that was all about five or six years ago.