Support resources for families dealing with cancer and other serious illnesses

mykosan said:Our work builds on over 60 years of expert research into how medicinal mushrooms affect cancer—which, honestly, gives it a longer track record than studying chemotherapy. Thousands of scientists have dug into various species, how they actually work, and their active compounds. Besides, nobody is suggesting we ditch everything modern medicine has built; people are just saying that sometimes current treatments aren't enough on their own and there are science-based methods out there to boost survival rates. Even quite a few doctors in the US agree and suggest this to their patients. To paraphrase Newton, science reaches this level because of the giants who cleared the path through the woods of ignorance ahead of us.

The timeline argument is even stronger when you consider that traditional medicine has used similar, simpler preparations for over 5,000 years, serving hundreds of millions of people. As useful as the modern pharmacological approach to cancer is, it can't compete with that kind of history. Modern pharmacology has been trying to solve the cancer puzzle for maybe the last 50 years; traditional medicine has a massive head start.

melloworca6 said:Excellent. There is actually a perfect subforum dedicated specifically to topics like this, right here: Alternative Medicine. I would kindly ask that you move this discussion over to that other thread, as posting about this topic here isn't permitted.

I would like to remind everyone once again about the rules outlined in the Health PDF: Health Subforum RulesIt’s particularly focused on this:

The Health subforum is closely linked to... conventional medicineEverything here must be grounded in hard science. We will not tolerate the imposition of alternative viewpoints or unproven treatment methods within this space. To be clear, anything lacking official medical backing or scientific validation—methods deemed ineffective or potentially harmful by the medical community—is classified under Alternative Medicine. If you want to discuss those topics, please move to the designated Alternative Medicine subforum. Furthermore, promoting any medication that hasn't been cleared by the FDA is strictly prohibited.

graniteorca42 said:Hi everyone, I’m new to the forum, though I’ve been fighting alongside my mom for quite a while now.
The reason I’m replying to you specifically is because this type of tumor is just so rare, and you were the first person I came across talking about it.
We live in a mid-sized city in the Midwest, and back in August of last year, my mom was diagnosed with a gallbladder tumor during what was supposed to be a routine surgery for gallstones. It had already spread to her liver and lymph nodes in the retroperitoneum. Now, she had incredible luck in a bad situation because she ended up under the care of one of the top surgeons in the country for these specific tumors—getting her to that operating room at all felt like something straight out of a movie. He managed to clear everything out during the surgery, but then my mom hit two really rough complications afterward. First, she dealt with enterocolitis from the antibiotics, and then she suffered a pulmonary embolism. She pulled through all of that, and about two months after the surgery, we could finally start chemotherapy; before that, she just wasn't strong enough. Once chemo kicked in, we found she had two metastases on the liver and one in the lymph nodes (all within just two months). She went through eight rounds of chemo and by this past May, her scans showed she was clear. Sadly, this August, we hit the same wall—three metastases right back in the same spot. She’s currently starting her second line of chemo. One thing I really want to emphasize is that even before all this, my mom had heart issues and was 80% disabled from an old car accident involving severe spinal injuries. And on top of all that, she gets this. When she had the surgery, the prognosis was less than a year, even assuming the chemo worked; honestly, some doctors didn't even think she’d survive the first round (she finished her treatment for the embolism just ten days before starting). I didn't have much hope myself, but here she is, right next to me. Throughout the whole illness, Mom has actually felt great regarding the tumor itself—she can eat, she looks good, and she hasn't had any pain. Even now, if you saw her, you wouldn't believe everything she’s been through. Keep hope alive; miracles really do happen. I know this is just extending her time, but as I said, we wouldn't have dared to wish for this in our wildest dreams. After the first three rounds of chemo last year, the tumor shrank by almost 90%, and one metastasis disappeared entirely. Mom handled that incredibly intense therapy remarkably well. As for the cancer itself, besides how rare gallbladder tumors are, she "hit the jackpot" with an even rarer type: a poorly differentiated neuroendocrine carcinoma—basically the "grand prize" of the worst possible tumors. Just don't give up until the very end. My head has been such a mess, I've survived so many shocks... I'm just pushing through now, feeling a bit more stable, but it still hurts so much whenever I think about it. Even here in the States, medical resources can be a struggle, though Mom was lucky to land an oncologist who is a true specialist in these specific tumors, which was a total stroke of luck for us.
I’d love to hear how things are going for all of you, and I’ll be praying for your mothers.

Kimberly Wright said:Intensive care?! Give me a break. People like that shouldn't even be taking up space in a hospital.
Good grief. 🙂

silvercanyon7 said:Hey there,

I haven't had the time to scroll through everything to see if this has been asked already, so I'm just going to jump in:
My dad has a neuroendocrine tumor. He’s finished his chemo and completed ten days of radiation. In about two or three days, he starts rehab, where the main focus is physical therapy to help him get back on his feet—he's actually been using a walker for the last ten days or so.
While he was in the hospital, he lost quite a bit of weight, so right now we're focusing on rebuilding his strength and getting more calories into him. Fortunately, his appetite is good; he's feeling much better now and the pain has subsided. He actually told me the radiation made him feel like he was coming back to life.

Does anyone have any specific dietary suggestions? I think I know a fair amount about nutrition when it comes to healthy people who are active, but once you're dealing with something like this, I feel like a total amateur.
I want him to put the weight back on as soon as possible because I know he needs that energy for his rehabilitation and training sessions.

Everything moved so incredibly fast here in the States (he got the diagnosis back in June). I'm riding a massive wave of emotions myself, but I'm staying strong for him. I'm just grateful we're facing this fight together.

Once I'm a bit more mentally stable (I'm seven and a half months pregnant, so the hormones are definitely playing a part in how I'm feeling), I'll try to write something more detailed.

I wish all of you, and myself, nothing but the best. What we're all going through is incredibly unfair, but we can't lose hope. We have to give it everything we've got to push through these crises.

silvercanyon7 said:Hey everyone,

Maybe someone else has already posted about this, but I honestly don't have the bandwidth to scroll through every single thread, so I’m just going to ask you all directly:
My dad has a neuroendocrine tumor. He's been through chemo and ten days of radiation. In about two or three days, he starts rehab—the main focus is physical therapy so he can actually stand on his own two feet again. For the last ten days or so, he's been relying on a walker.
While he was in the hospital, he lost quite a bit of weight. Now, we're working hard to strengthen his body and get more calories into him. Thankfully, his appetite is good; he’s feeling better now and the pain has subsided. He says the radiation actually made him feel like he's back in the land of the living.

Does anyone have suggestions regarding nutrition? I feel like I should know so much about diet, but when it comes to healthy people who are active, I'm fine—but when it's something like *this*, I feel like a total amateur.
I want him to gain weight as quickly as possible because I know he needs that energy for his rehab and his training sessions.

Everything happened so incredibly fast here in the States (he got the diagnosis back in June). I'm riding these massive waves of emotion myself, but I have to stay strong for him. I'm just grateful we're in this together, fighting this fight side-by-side.

Once I'm a little more mentally stable (I'm currently seven and a half months pregnant, so let's be honest, the hormones are definitely playing a part in how I'm feeling), I'll try to write something more detailed.

I wish all of you, and myself, nothing but the absolute best. What we are going through is profoundly unfair, but we can't lose hope. We have to give everything we've got to push through these crises and these heavy moments.

vividsailor7 said:Which NET are we talking about here? Pancreatic? Other parts of the GI tract?
There are plenty of them—gastrinomas, VIPomas, insulinomas, somatostatinomas, glucagonomas...

graniteridge5 said:Guys, I’m reading all these posts where everyone is nauseous and can't eat a thing during chemo, but my mom is eating like a horse. Since she started her treatment, she’s actually gained over 10 pounds... Is it possible the chemo isn't working? To be fair, she’s taking everything under the sun for her immunity and strength—beet juice, Cordyceps supplements, papaya tea, vitamins, honey, and these aloe vera and honey concoctions.

I don't know whether to be happy that she still has her strength—I mean, obviously I'm glad she feels great—but I'm terrified that maybe the treatment isn't doing its job..

Angela Wright said:If Mom is taking steroids like Medrol, they’re likely playing a role in her appetite and any "weight gain."

graniteridge5 said:First comes the Paclitaxel/Carboplatin combo... does that cause weight gain, or have we just pumped her system full of all those supplements meant to boost her immunity?

Angela Wright said:No, we are talking about chemotherapy here. Usually, before the infusion begins, they’ll definitely administer some Dexamethasone or Medrol—standard corticosteroids. Beyond just being anti-inflammatory, they help mitigate those inevitable side effects like nausea.
What can actually undermine the chemo's efficacy, however, are those various immune boosters and antioxidants. They tend to bind themselves to the free radicals produced by the chemotherapy—the very toxins meant to target and destroy malignant cells. It is best to avoid them on the days treatment is administered.

graniteridge5 said:They get some kind of injection added to their IV, but they aren't getting any pills...
What exactly do you mean by "immune boosters"? Are we talking about papaya tea, beet juice, or Cordyceps supplements? That's the stuff she takes just to stay upright... along with multivitamins or just hitting the vitamins in her smoothies...

Angela Wright said:She gets Dexamethasone intravenously.
Everything listed there falls under the category of immune boosters—essentially anything meant to bolster the system. These should be taken during the intervals between treatments to help the body recover for the next cycle; you definitely don't want to take them on the actual days of therapy.

graniteridge5 said:She was taking them every single day, just like any other day, part of the routine.
Chemo lasts one day, so when you say "days," what exactly are we talking about? Are you referring to a couple of days before treatment, a couple after, or what?