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

Thank you, Angela Wright, and make no mistake—we haven't surrendered. Perhaps we simply need to approach this from a different angle altogether. I intend to conduct a thorough review of their website.

redfox81 I know it isn't easy. It’s incredibly hard to dig up any sense of hope when you’ve already lived through certain realities. I went through this exact thing recently when I found out my dad had metastases. That single word—metastases—felt like the beginning of the end, and I just couldn't find a way out of that darkness. I’d tell my father one thing, while my mind was screaming something completely different. But once the initial shock wears off, you start fighting. Every little win feels like a victory sent from above. It doesn't have to be some massive milestone; even just seeing him have an appetite or getting a decent blood count before chemo keeps us going. We're constantly looking into treatment options abroad, too. We fight every single day, and honestly, my faith is what's keeping me upright. I believe in God, and that's where I find my solace... and look, miracles really do happen, you know? 😉

One question though—is it safe to use Avemar alongside beta-glucan and native propolis?
He's been on the beta-glucan and native propolis since the start, and now his doctor suggested Avemar, but my dad didn't think to ask if they could all be taken together!

cosmiclynx14 said:redfox81 I know it’s brutal. It is incredibly hard to find any sense of hope once you've already been through the wringer and seen the reality of the situation. I went through this exact same nightmare recently when I found out my dad had metastases. That one word—metastases—felt like the beginning of the end, and I just couldn't shake that feeling no matter how hard I tried. I would tell my dad one thing, but inside, my mind was racing with total dread. But eventually, once the initial shock wears off, you just start fighting. Even the smallest wins feel like hitting the jackpot. It doesn't have to be a massive breakthrough; sometimes it's just seeing him actually have an appetite, or getting a decent blood count back before chemo. We’re constantly scouting for treatment options abroad, too. We fight every single day. For me, faith was the anchor. I believe in God, and that’s where I found my peace... and honestly, miracles really do happen, you know? 😉

Also, quick question—is it safe to take Avemar alongside beta-glucan and raw propolis?
He’s been using the beta-glucan and propolis from the start, and now his doctor suggested Avemar, but my dad didn't think to ask if mixing them all together was okay.

Absolutely! In fact, I just finished reading an abstract for a study on PubMed: http://www.ncbi.nlm.nih.gov/pubmed/20155632

Angela Wright said:On top of that lymphedema, she’s dealing with neuropathic pain too... honestly, just get her in to see Dr. Miller at the Mayo Clinic outpatient center. He’s seen this exact mess a thousand times. He can basically tailor a combo therapy to hit that whole spectrum of pain she's feeling—you just have to actually address it and know how to play the game.
Phone: 505-555-0199

Thanks for the heads up. 😉

I had intended to sit down and draft a formal list of questions—strictly for my own clarity—to present to the oncologist this coming Thursday so I could finally pin down some answers. However, I found myself spiraling into an old thread titled "Supporting Families Facing Malignant and Serious Illnesses," and before I knew it, three hours had vanished. I spent that entire time lost in those stories, alternating between heavy tears and sudden, unexpected laughter. 😘 Sending so much love to all of you.
The list remains unfinished; I simply couldn't bring myself to continue. In truth, I feel completely out of my depth. If it weren't for this community, I wouldn't even realize that a current diagnosis isn't necessarily the final word. For instance, should I actually bring my father to the specialist when I’m only heading there to pick up a referral? When we discussed the appointment, he just shrugged and said, "If you want me to go..." 🤷

What specific steps are required to secure a definitive diagnosis? Is a biopsy mandatory, or would a simple needle aspiration suffice to confirm what we're dealing with?
How long does one typically wait for the results to come back?
And if the results come back positive, what then? What are the actual avenues for treatment? Specifically, regarding metastases in the liver, what options are on the table—palliative surgery, radiation, chemotherapy? What are the risks and side effects involved?
Conversely, if the results are negative, how does the protocol proceed? How would they go about locating the primary tumor?

Angela Wright thanks, and thank God he grabbed them right away and downed two packs immediately... even though he’s only supposed to have one a day. And what else isn't allowed? He can't be mixing these with his other meds either. 🙂

feralsurfer72 I know exactly how you feel. I was just reading about this myself and ended up in tears.

I've actually put together a list of questions for the oncologist for our appointment this Thursday. There's just so much I want to ask, but honestly, I'm terrified of finding out too much.

As for the answers to those questions, I don't have them. All I can do is offer support. 😘

feralsurfer72

🙂 I guess that’s just how everyone feels when they’re stuck in this mess. Reading through this thread really helps—both practically and, you know, for my own sanity. It’s good to see you aren't alone... Look, I don't have all the answers to your questions, but I can be here for you, and so can cosmiclynx14. I was doing the exact same thing, scribbling down a massive list of questions for the oncologist, but honestly? She ended up answering most of them just by talking to us.

We're total newbies at this whole thing, still trying to find our footing, but our experience has been a complete whirlwind since we finally met a doctor at a major hospital in Chicago. Before that, Dad had only been feeling off for about a month—just fatigue, bloating, and bathroom issues. In that single month, he went through two ultrasounds, chest X-rays, an ER visit, and treatment for H. pylori, and absolutely nobody noticed his abdomen was full of fluid until that doctor stepped in and ordered an emergency endoscopy. From that moment on, everything moved at lightning speed. He got a diagnosis in three days, had a stoma put in four days later, and started therapy just two weeks after surgery. Today is day seven on Xeloda. He’ll take it for another week, then after a one-week break, he goes back to the oncologist to decide on the next steps. Because of how he’s recovering from surgery, they didn't go with IV chemo right away; instead, they opted for pills he can take at home, which are basically meant to stop the tumor from growing further (at least, that's how I've taken it). The chemo is supposed to tackle the metastases in the liver and the peritoneum.
The whole diagnostic gauntlet included an endoscopy, colonoscopy, abdominal ultrasound, CT scans of the abdomen and pelvis, cytology, pathology, blood work, and chest X-rays. We even sent all the results over to a specialist clinic in New York, and they just confirmed the diagnosis, saying their protocol would have been exactly the same.
Anyway, that's our story. Maybe it helps you a little.

Sending a huge 🙂
to everyone.

feralsurfer72 said:What needs to happen to get a final diagnosis? Is a biopsy necessary, or is a needle aspiration enough to settle it?
How long does it usually take to get the results back?
And what if the results come back positive? What are the treatment options then? What can be done about liver metastases? (Palliative surgery, radiation, chemo, radiotherapy? Risks and side effects? Targeted therapy?)
What if the results are negative? What’s the next step? How will they figure out where the primary tumor actually is?

Look, feralsurfer72—you definitely need that needle aspiration to pin down the exact type of tumor (whether we're talking adenocarcinoma, small cell, etc.) because that dictates everything regarding treatment. In our case, we had the results by the second day since my dad was already admitted to the oncology ward at the hospital—so being under hospital care probably sped things up. But based on what others have mentioned, you're usually looking at about 10 days for the pathology report to clear.

As for whether the result will be "positive" or not... honestly, it's pretty much already established that there's a tumor here. The test is just going to identify the specific type. If it turns out to be adenocarcinoma, they'll likely look at the pancreas as the primary source; if it's small cell, it's likely lung-based—it could even be melanoma. Either way, the pathology report tells them what they're dealing with, and the doctors will propose a plan based on that (which would include most of the stuff you listed, though I doubt they'd use radiation unless it's for painful bone metastases or certain lung lesions, since you don't really radiate the liver).
Depending on what that pathology report says, the doctors will finally have a clear idea of where the primary tumor is hiding.

I'm sincerely hoping things start moving forward soon, because, unfortunately, there isn't any time to waste. And please, don't feel bad about grilling the oncologist tomorrow with every single question on your mind!

We headed in for our checkup today, and honestly, the doctor was pretty pleased with how those liver metastases have receded—though, to be fair, she wasn't exactly expecting much movement regarding the bone issues.

Chemo kicks back up in a week; we’ve got three more cycles of the PE regimen left before the next round of scans.

So, hang in there, my fellow fighters—I'm pulling for every single one of you!

Rachel Wood27 said:We had our check-up today, and the doctor is actually happy—the metastases in the liver are receding, and she wasn't even expecting much improvement regarding the bones.

Chemo starts back up in a week. Three more cycles of PE, then another follow-up.

Hang in there, my fellow fighters. I'm pulling for all of you!

But what does "liver metastases are receding" actually mean in plain English? Are they just trying to blast everything away with chemo, or is there an actual chance at surgery if things shrink enough?

Ugh, here I am again, unfortunately...😢 My aunt just found out she’s battling colon cancer. She had surgery back in January, and the surgeon told us they managed to get everything that was affected, so then came the first round of chemo. Honestly, it’s been brutal—she took it so incredibly hard that her doctors actually mentioned they hadn't seen anyone react this poorly to treatment before; she nearly didn't make it through. We're talking fifteen days of nonstop diarrhea and high fevers... she ended up hospitalized, and she's been stuck there for a week now because the diarrhea just won't quit. On top of all that, she's super anemic. Does anyone here have any firsthand experience dealing with this disease? And there's one more thing that's really weighing on my mind... the doctors told her it's fine to eat meat, but I've been reading all these things online saying that you should avoid meat when you're fighting colon cancer.
Thanks so much to everyone who can offer even a little bit of advice.

Amy Torres4 said:Ugh, here I am again, unfortunately..😢 my aunt was recently diagnosed with colon cancer. She had surgery back in January, and the surgeon said he cleared out everything that was affected, so then came the first round of chemo. Man, she took it incredibly hard. The doctors actually told us they hadn't seen anyone react this badly to chemo before—she almost died from the side effects. We're talking 15 days of nonstop diarrhea, fever... she ended up in the hospital, and she's been there for a week now because the diarrhea just won't stop. She’s also really anemic.... does anyone have experience with this disease? And one more thing is eating me up... the doctors told her she can eat meat, but I was reading online that you shouldn't eat meat when you have colon cancer.
thanks to everyone who can offer any kind of advice.

My dad has (metastatic) colon cancer, and his gastroenterologist told him to stick to light foods (boiled stuff, white meat...) since he has a stoma. However, his oncologist insisted he needs to eat "stronger" food because he needs the strength to survive the chemo. So, that's what we decided to do, because honestly, treating the cancer is the priority here. Look, we aren't handing him steaks and beef every single meal, but he does eat veal and beef. Generally, he eats more substantial food. I can't say he's handling the chemo perfectly, but out of a million possible side effects, he's mostly just exhausted, gets occasional headaches, and sometimes has stomach pain a few hours after treatment. He was incredibly weak and his blood pressure was terrifyingly low, but ever since he started eating better, his pressure has stabilized.

I don't know, I think if he had kept eating that bland "hospital food," things would have gone way worse. Eventually, even the gastroenterologist agreed it was okay.

Amanda Anderson87 said:My dad is fighting metastatic colon cancer, and his gastroenterologist told him he needs to stick to light stuff—you know, boiled foods, plain chicken, basically nothing heavy—especially since he’s also dealing with a colostomy bag. But then his oncologist goes and says the exact opposite, telling him he actually needs more substantial, nutrient-dense food because he needs all the strength he can get to handle the chemo. So, we decided to listen to the oncologist, because at the end of the day, isn't beating the cancer the main goal here? We aren't exactly serving him steak dinners every single night, but he does eat beef and veal quite regularly, just generally much heavier meals than before. I wouldn't say he's breezing through the chemotherapy, but out of a million possible side effects, he's mostly just exhausted, gets the occasional headache, and some stomach pain a few hours after treatment. He was incredibly weak before, and his blood pressure was dangerously low, but ever since he started eating more robustly, his blood pressure has finally stabilized.

I don't know, honestly, I really think if he had stuck to that bland "hospital food," things would have gone way worse. Eventually, even the gastroenterologist admitted that what we're doing is fine.

Thanks so much for getting back to me. I totally realize that everyone’s body reacts differently, but I really feel like you need to eat something a little more "substantial" to help boost those iron levels...

cosmiclynx14 said:But what does it actually mean when they say liver metastases are receding? Are they trying to wipe them out completely with chemo, or is surgery an option if they shrink enough?

The doctor is coordinating everything with the chemotherapy—if all those liver metastases pull back, then she’ll take him off the chemo. I haven't pressed her on other options yet (like radiofrequency ablation), but I definitely plan on bringing that up.

Right now, I'm just hoping these next three rounds of chemo finish the job and kill off those metastases for good. If anything is left over after that, I'll ask about the ablation.

With my dad, his liver was absolutely riddled—there wasn't a single spot that wasn't hit. The largest lesion was 5.5 cm right when we first found out about the tumor, and things actually got worse before we even started treatment.
Now, there are two larger lesions—the biggest one being 3.5 cm—plus a few smaller ones.

Compared to the previous scans, the metastases have shrunk significantly, and the doctor pointed that out herself.

So, I'm just holding onto hope and praying those liver metastases disappear entirely—though, honestly, I'm terrified of the idea of stopping chemo, because I know how brutal that cellular level stuff can be.

Anyway, all we can do is keep fighting and try to stay optimistic and positive. 🙂

It was the exact same story for us. Once we got the diagnosis—metastatic colon cancer—we immediately switched to a super light diet. But while we were just sitting there waiting for chemo to start, things actually took a turn for the worse; markers shot up. Then, the doctor gave us the same advice he gives everyone: don't mess with the diet too much because he needs the patient to have actual strength to survive the treatment. So now, we aren't being restrictive about what we eat; we just stopped overusing heavy spices like we used to. We use high-quality extra virgin olive oil in salads instead of the cheap store-bought stuff, and we make sure every single meal is packed with natural ingredients sourced from Whole Foods...
Every single day is loaded with fresh fruit and vegetables. Honestly, this is how everyone should be eating anyway; it’s not rocket science...

Rachel Wood27, my dad started out with liver metastases that were even larger than your father's. The biggest one was something like ten times the size, another was slightly smaller, and the third was about 2 cm... and all of them had heavily involved the entire liver...
Thank God, they are shrinking. We’ve finished six cycles and have six more to go. Time is flying by; we’re already halfway through, and honestly, all I can think about is what happens after this is all over...

And what is the actual difference between microcellular and adenocarcinoma? Ours is adenocarcinoma...

cosmiclynx14 said:It was the exact same story for us. Once we got the diagnosis (metastatic colon cancer), we immediately switched to this super light diet. We were just waiting for chemo to start, and honestly, things just got worse—his markers spiked. Then the doctor told us, "Stop messing with his food! He needs all the strength he can get to survive these treatments." So now, we aren't avoiding anything specific anymore. We just don't go overboard with the heavy spices like we used to. We use high-quality extra virgin olive oil in salads instead of that cheap store-bought stuff, and we pack every meal with natural ingredients from Whole Foods...
lots of fresh fruit and veggies every single day... and yeah, frankly, that’s how everyone should be eating anyway. It’s not rocket science.

Rachel Wood27, my dad started out with liver metastases that were even bigger than your dad's. The largest one was like 10 times the size, another was slightly smaller, and the third was about 2 cm... and they had basically taken over his entire liver.
Thank God, though, they're actually shrinking. We've finished 6 cycles, with 6 more to go... time is flying, we're halfway there already, and I'm just sitting here wondering what happens after this is all done..

Also, what's the actual difference between microcellular and adenocarcinoma? Ours is adenocarcinoma..

I mean, it makes sense. When we mentioned to the oncologist that his blood pressure was low, she told us to increase his salt intake since his kidneys are healthy. She said he's fighting something way scarier right now than a little high blood pressure or whatever else salt might mess with. And hey, it worked—his pressure normalized.

Today marks day eight on Xeloda, and my dad is starting to get incredibly, incredibly nauseous at the sight of food. He still eats whatever I put in front of him, but he’s repulsed by it. He gets this urge to vomit and looks like he's about to burst into tears from the sheer misery every time he sees a plate. Is there anything at all that could help dial down this constant feeling of disgust?

cosmiclynx14 said:...lots of fresh fruit and veggies every day...

I guess by "fresh" you mean cooked, not raw. Raw food and a weak immune system usually don't mix well.

Amanda Anderson87 said:...is there anything that could help reduce that nausea?

Citrus scents used to work for me. Just zest a little lemon or orange peel and have him sniff it when he feels like he's gonna gag. For me, the urge to vomit was triggered by heavy coughing, not food or chemo, so who knows if it'll work for him—but maybe ask if he'd try it. There's probably some meds that help too, but Angela Wright would know better than I do.

copperbison4 what are you even talking about? My doctor specifically told me to stick to fresh juices made in a juicer, and that they should be mostly vegetables with just a little fruit added—purely to balance out the taste and smell..

He drinks a massive pint of that stuff every single day, and he always has a plate sitting right next to him piled high with sliced fruit, veggies, and all sorts of grains and seeds to snack on..

I don't know, but as long as his blood work comes back perfect, I'm sticking to what we're doing.🤷

My doctors actually encouraged me to eat whole foods, 🤷 so maybe it’s just a specific type of therapy they're running and the doc knows what they're talking about. My bad...

You really ought to clean your fruits and veggies by soaking them in a bowl of water mixed with baking soda. I remember my niece's husband was told to do exactly that. As for the meds, the treatment is pretty standard; it mostly just stops the vomiting. Personally, I think the nausea is more of a psychological thing. A friend of mine used to absolutely gorge herself on pizza during chemo—she’d feel fine while eating, then she’d throw up later. After that, she couldn't look at a slice of pizza again for the rest of her life.