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

So, we ended up buying that exact same Beta Glucan for my mom while she was going through her chemo rounds, because we were basically scouring the internet and asking everyone we could for second opinions—not just about the actual therapy itself, but about all those supplements meant to boost the immune system too. It was such a whirlwind of conflicting advice, honestly! We talked to one oncologist who told us it was perfectly fine to take, though he suggested avoiding it for a few days right before the infusion, but then another oncologist told us not to touch it at all because nobody truly knows how it might interact with the chemo in the body. Then, we even spoke to a homeopath who gave us a really scary warning, saying we shouldn't even think about it because any supplement designed to ramp up the immune system might accidentally signal the tumor to attract that extra immune response, which could actually make it grow faster... it’s so overwhelming, isn't it? In the end, Mom decided to take it a few times during the gaps between her treatments, and besides that, she mostly stuck to royal jelly and propolis that we sourced from local beekeepers, along with plenty of fresh juices made from beets, carrots, and apples, plus some aronia juice and various green smoothies.

Amanda Miller69 said:What are your experiences with Beta Glucan?
Today we started my father-in-law on that American stuff from Transfer Point, the 500 mg version.
My sister-in-law tells me some nutritionist—who supposedly supplies pharmacies—told her you shouldn't touch it without consulting an oncologist first because it might actually trigger cancer spread. Helloooo, that’s a pretty weird claim, right? 😲.
I told her she probably misunderstood; as far as I know, you don't use it during active chemo or radiation because it can interfere with those treatments, but you use it normally during the breaks or otherwise.
It’s relatively pricey ($213, 60 capsules), so we’ll see if it actually does anything (assuming my father-in-law isn't too stubborn to take it—thank God, at least the Native started taking it).
Besides that, he keeps getting this bitter taste in his mouth and occasionally feels nauseous... anyone have any idea why?

There was some discussion about this before, and even if you try to crucify me now, I can't find the thread or my previous response with the links... basically, you just don't take it during chemo, but it's fine for recovery between cycles. Either way, we're talking about an immune booster that ramps up the system, and a strong immune system is absolutely critical for recognizing and fighting off malignant cells. Plus, it’s great for suppressing fungal infections, which people on chemo are prone to and that can cause massive issues, sometimes even life-threatening ones.
The idea that cancer cells can somehow "create their own immunity" sounds like total nonsense to me; it doesn't align with basic biology. Malignant cells are just regular cells within a person's body that mutated and became invasive. They aren't separate organisms living inside you, like some kind of parasite. We all carry potential cancer cells in our bodies every single moment of our lives, and it's the immune system that keeps them in check. If that theory held water, then taking any vitamin, antioxidant, or immune booster would be a leading cause of cancer and would accelerate tumor growth because they "created immunity." These aren't viruses or bacteria that develop resistance after prolonged exposure to antibiotics, for God's sake. 🙄.
Maybe I'm just shooting in the dark here, but based on my modest knowledge, that's how it works. Go ask a biologist if you don't believe me.

Here is a pretty reliable site: http://www.webmd.com/vitamins-and-su...uses-and-risks
http://www.cancer.org/treatment/trea...itake-mushroom

Angela Wright said:We all carry around cancer cells at various moments in our lives, which are kept in check by our immune system. This theory actually makes some sense—if you consider that flooding the body with vitamins, antioxidants, or immune boosters might inadvertently act as a catalyst for tumor growth because the cells have already established their own little environment.

It’s possible the issue isn't necessarily about the tumor's own immunity, but rather that some studies surprisingly suggest antioxidants might actually speed up the transformation of pre-malignant cells into malignant ones.

http://www.webmd.com/cancer/news/1...er-progression

Richard Sanders7 said:Maybe the issue isn't the tumor immunity itself, but some studies surprisingly suggest that antioxidants might actually speed up the transformation of precancerous tumors into malignant ones.

http://www.webmd.com/cancer/news/1...er-progression

Right, but we're talking specifically about lung cancer and a specific antioxidant called acetylcysteine here. They also found the exact same thing happens with beta carotene and Vitamin E when dealing with precancers. My theory? It’s because they bind to free radicals, which essentially masks the cells so the immune system doesn't recognize them as diseased tissue—creating the perfect little playground for a tumor to grow.
With actual malignant diseases, though, immunobusters like Beta Glucan aren't trying to kill the cancer cells directly; their job is to ramp up the immune system so it can actually spot and destroy those cells. Studies on glucan have shown improved survival rates for patients with colorectal cancer and head and neck cancers (if I recall correctly).

Good morning... We're still fighting here, but things aren't going our way. Mom is dealing with severe dehydration, and the oncology team says they won't do any more IV fluids, and her primary care doctor feels the same. She went over 30 hours without a single sip of water; she only managed a tiny bit yesterday evening. Her hands are swollen, as are her ankle joints, and yesterday there was this clear fluid leaking from her nose and a white liquid coming from her mouth, and now she just sleeps. She’s urinating at least 10 times a day, and her bowel movements are frequent too... apparently, everything is just emptying out. Her blood pressure is sitting at 87-54, her heart rate is 130, and her breathing seems so strange. She isn't really talking, but when she does, it's about death or things like: I don't know what to do with my legs, let's just cut them off and put them in stew so we can eat them. When I try to talk to her, she doesn't seem to register me, like she can't even hear me... and she keeps calling me by different names. The veins in her head are bulging, and there's this eerie calmness in her face; she only wakes up briefly due to anal pain during bowel movements, which she isn't even having... There's no visible pain anymore, and for two days and nights she's been sleeping in the exact same position, which is so unlike her because her pain is usually terrible and we have to turn her every 20 minutes, but now, nothing... supposedly the home health nurse says it takes 72 hours to settle down... how long can this last, and what is actually happening? I am aware that the end is near, but is this what the end looks like?

The waiting game is absolutely infuriating. It just gets under your skin.
So, here’s the deal: it's metastatic breast cancer. They need to perform a lymph node biopsy on the neck to get a histological analysis so they can pinpoint the exact type of cancer. The goal is likely to figure out which chemotherapy cocktail will actually work.

But of course, you're stuck in this endless loop of waiting for your turn for surgery, while that nasty thing on the neck just keeps progressing. By the time you finally get seen, it feels like ages have passed since those nodes were first spotted.

Does anyone know if it's possible to get this surgery and testing done through a private clinic? And if so, is the cost astronomical? Apparently, it has to be done under general anesthesia. :/

hollowridge88 said:Morning... We’re still fighting here, but we aren't winning. Mom is severely dehydrated; oncology won't authorize an IV anymore, and her primary care doctor is refusing too. She went over 30 hours without a single sip of water—she only managed a tiny swallow yesterday evening. Her hands are swollen, her leg joints are swollen, and yesterday she had this clear fluid leaking from her nose and a white liquid leaking from her mouth; now, she just sleeps. She’s urinating at least 10 times a day, and her bowel movements are similar... apparently, she’s emptying out. Her blood pressure is 87-54, heart rate is 130, and her breathing is incredibly strange. She doesn't talk much, but when she does, it's about death or things like: I don't know what to do with my legs, let's just cut them off and put them in stew so we can eat them. When I try to talk to her, she doesn't respond, like she can't even hear me... she keeps calling me by different names. The veins in her head are bulging, and there’s this eerie calmness in her face. She only wakes up for the pain in her anus when she tries to pass stool, which isn't even happening... There's no pain anywhere else. For two days and nights, she’s been sleeping in the exact same position, which is bizarre because she usually deals with horrific pain and we have to turn her every 20 minutes, but now, nothing... supposedly the home health nurse says it takes 72 hours to stabilize... how long can this go on, and what exactly is happening? I realize the end is near, but does the end really look like this?

Mom isn't feeling the pain anymore because the bilirubin levels have likely sedated her and dulled the sensation... yeah, the end is close, maybe today or tomorrow at the latest... I am so sorry, dear... hang in there.

hollowridge88, I’m so sorry, babe, I honestly don't even know what to say. Thinking of you guys... hang in there.

Hi everyone.

I’ve been lurking on this forum for a while now, just watching, but I haven't felt like joining in until now. Reading about all of you losing your loved ones... I truly feel for you. My mother—she was born in '57—was diagnosed with ovarian cancer and had surgery back on May 22, 2014. It’s Stage IIIC. During the operation, they had to remove both ovaries, her uterus, her appendix, and the peritoneum (which was full of metastases). When we went to ask the doctor how everything went, he basically just laid it out plain: told us what the cancer was and everything they had to cut out. His words are still ringing in my head, honestly. He said she’ll never be cured, but that she could live with it for a long time with good quality of life—though he added that she might not even get that far. He also said she definitely won't see old age. Of course, we didn't tell her that. We all want to believe in a cure. It feels impossible that she got sick; she was always going a hundred miles an hour. My father (her husband) has been battling alcoholism for twenty years, and she carried all of that weight on her shoulders for all those years. She made sure her kids—my sister and me—got a great education, and she finally got to see her grandkids after waiting years for them. My sister has a little boy who's eighteen months old, and my little girl is almost one. I look at my mom and I can see the sadness in her eyes because she knows she can't really watch them grow up or play with them. Before the surgery, her CA-125 markers were at 465. By the time she was ready for her first chemo session (about a month later), they jumped to 850. After the first round of chemo, they dropped to 280, but then they rose by 120 after the second round, and after the third, they went up by another 110. She had an ultrasound, and they found some cysts on her liver, though the oncologist at the Mayo Clinic said she couldn't tell if they were just cysts or metastases. She needs to get a CT scan and bring the results to a medical board so they can consider changing her chemotherapy. One cyst is 3 cm, and the other is 1 cm. Everything else on the ultrasound looked clear. I’m wondering if anyone here has dealt with something similar or if you have any advice? Mom is avoiding sugar and red meat, mostly eating boiled foods. Does diet actually matter during treatment? If anyone has any advice at all, please.

P.S. Sorry for the long post.

Amanda Wells75 said:Greetings to everyone!

I’ve been lurking on this forum for quite some time now, but I haven't quite found the right moment to join the conversation. Reading about the losses you all have endured, please know that my heart goes out to you. My mother (born in 1957) was recently diagnosed with ovarian cancer. She underwent surgery on May 22, 2014, where they removed both ovaries, her uterus, her appendix, and the omentum, which was unfortunately laden with metastases. The diagnosis is Stage IIIC. When we approached the doctor following the procedure to ask how everything went, his response was blunt: he simply confirmed it was cancer and listed everything they had to remove. To be honest, his words still echo in my head—he told us she wouldn't be cured, though she might live with it for a while in good quality, but even that wasn't a guarantee. He also mentioned she likely won't reach old age. Naturally, we didn't share that part with her; we prefer to hold onto hope for a recovery. It feels impossible to reconcile this diagnosis with the woman she is—she has always lived life at a hundred miles an hour. The stress hasn't just come from the illness itself. My father has been struggling with alcoholism for twenty years, and my mother has carried the weight of that burden for the entirety of those years. Despite everything, she made sure my sister and I received a top-tier education, and she finally got to see the grandchildren she spent years praying for. My sister has a little boy who is eighteen months old, and my daughter is nearly a year old. I see the sadness in my mother's eyes because she knows she can't be there to watch them grow up the way she planned. Regarding the clinical side of things: before surgery, her CA-125 markers were at 465. By the time she started her first round of chemotherapy about a month later, they had spiked to 850. After the first session, they dropped to 280, but then rose to 120 after the second, and climbed again by 110 after the third. An ultrasound recently revealed some cysts on her liver, though the oncologist at the Mayo Clinic couldn't say for certain if they are simple cysts or metastases. She’s scheduled for a CT scan, and once we have those results, she'll go before a medical board to discuss adjusting her chemotherapy regimen. One cyst is 3 cm and the other is 1 cm; fortunately, nothing else showed up on the ultrasound. I am reaching out to see if anyone here has dealt with a similar situation or if you have any advice. Currently, Mom is avoiding sugar and red meat, sticking strictly to boiled foods. Does diet play a significant role in the treatment process? If anyone has any insight or guidance, I would deeply appreciate it.

P.S. My apologies for the lengthy post.

My mother was also fighting this illness, and sadly, she lost that battle.
It all started with a Stage III C diagnosis. Since then, it’s been a relentless cycle of surgery, followed by chemotherapy, more surgery, more chemo, and yet another surgery. It feels like I'm just moving from one procedure to the next in an endless loop.
About six years ago, the doctors initially put her on a new chemo regimen that honestly didn't seem to do a thing. It felt like we were just spinning our wheels. However, they eventually switched her over to Taxol, which actually worked—it brought her markers back down to normal levels and bought her some much-needed time in remission.
She managed to pull through two full years since her diagnosis, despite the doctors originally giving her only six months.
I lost my father less than a year before that happened, but even then, Mom couldn't bring herself to let go and follow him—they were incredibly close. Instead, she stayed and fought for me and my brother.
The third surgery was incredibly extensive—it was a HIPEC procedure—and she just never quite recovered after that. Honestly, if her body had been able to withstand the toll it took, I truly believe she might have held on for another year or two.
If you check the old thread, there’s a story posted by Dina9. She managed to live with that illness for over ten years—though, unfortunately, she didn't make it in the end.

Diet is absolutely critical if you want to stay ahead of the curve. Personally, I think it’s worth cutting out red meat, refined white sugar, and white flour—basically anything that acts as fuel for cancer.
It might actually be worth considering adding some Native Propolis to the regimen. It serves as a solid antioxidant and provides a nice boost to the immune system, which can be particularly beneficial when dealing with reproductive system tumors. Additionally, incorporating Beta Glucan could offer some added support there as well.
Tibetan mushrooms are actually quite decent; you mix them with milk to create kefir, which my husband and I have been drinking lately. It’s honestly fantastic for the immune system.

Making any kind of prognosis is a thankless task, really. At the end of the day, the most important thing is ensuring she gets to live as high-quality a life as possible and stays focused on the positives for as long as she can. Beyond that, we just have to leave it in the hands of the Almighty.

If there's anything else I can do to help, just let me know.

Angela Wright said:Yes, we are specifically talking about lung cancer here and a particular antioxidant, acetylcysteine. They’ve also discovered that the exact same phenomenon occurs with beta carotene and Vitamin E, even in precancerous stages. I suspect this happens because they bind to free radicals, which essentially masks them from the immune system; the body fails to recognize them as diseased tissue, creating the perfect environment for tumor growth.
When dealing with actual malignancy, however, immunobusters like Beta Glucan aren't meant to kill cancer cells directly; their job is to bolster the immune system so it can actually identify and destroy those cells itself. Studies involving glucan have shown increased survival rates in patients with colorectal cancers and head and neck cancers (if my memory serves me correctly).

Of course, I’m back to dealing with my mother-in-law's stubbornness, since everything her daughter says is treated like gospel. She has firmly planted it in her head that Beta Glucan causes cancer to spread, period. If she claimed that manure was healthy, I’m sure she’d be serving it up at dinner. 😠
What kind of nutritionist works with oncology patients if they're spouting nonsense like Beta Glucan promotes cancer spread? If that were true, you certainly wouldn't see them selling it.
I told her she should go see him on September 17th when he’s giving a lecture there—she can bring his test results, get his phone number, and then let me have a little chat with him myself.
My husband mentioned that his father has lost at least another ten pounds despite eating normally, which doesn't sit well with me at all.
Also, I'm still waiting to hear back from the oncologist; honestly, how long am I supposed to wait? Or should I just be the annoying one and give her a call?

Amanda Miller69 said:Of course I’m dealing with my mother-in-law's stubbornness again, because apparently, everything her daughter says is gospel. She’s convinced herself that taking Beta Glucan will make the cancer spread, period. If she claimed that eating trash was healthy, they’d probably be lining up to buy it. 😠
What kind of nutritionist works with cancer patients and spouts nonsense like Beta Glucan promotes tumor growth? They definitely wouldn't be selling it if that were true.
I told her she should just go see him on September 17th when he’s giving a lecture there, bring his contact info, and let me have a word with him myself.
My husband mentioned his father has lost at least another 10 pounds despite still eating, which really worries me.
I'm also waiting to hear back from the oncologist; honestly, how long am I supposed to sit around waiting? Or should I be the annoying one and call her myself?

What do you think, 😉
Don't bother calling. Just show up there in person and keep the conversation as short as possible.

Amanda Miller69 said:My mom fought this same disease, and unfortunately, she lost that battle.
She was diagnosed at Stage III C—surgery, chemo, surgery, chemo, then more surgery.
Back then (about 6 years ago), they first tried some new line of chemo that didn't do a thing for her, but after they switched to Taxol, her markers went back to normal and bought her a little time in remission.
She lived two years after the diagnosis, even though they told her she only had six months.
I lost my dad less than a year before that, but Mom wouldn't just let go and follow him (they were incredibly close); she kept fighting for me and my brother.
The third surgery was massive (HIPEC), and she just never recovered after that. If her body had been able to take it, I truly believe she would have lasted another year or two.
On the old forum, there’s a story under the name Dina9 about someone who survived over 10 years with this illness (sadly, she didn't make it).

Diet is definitely crucial (cut out red meat, white sugar, white flour—basically anything that feeds cancer).
It might be worth taking some Native propolis. It's an antioxidant and boosts the immune system, and it's particularly good for reproductive system tumors. Beta Glucan is also good.
Tibetan mushrooms are great too; you mix them with milk to make kefir (my husband and I take it, it's amazing for immunity).

Any kind of prognosis is a thankless thing to try and give, really. The main thing is to ensure she has as much quality of life as possible and to stay positive as much as you can, and then whatever God wills, happens.

If there is any other way I can help, please let me know.

Thanks for the support and the advice.
I'm so sorry your mother lost the fight against such a nasty disease so soon after diagnosis. I've read all the posts by Dina9. We are all staying positive and believing in a cure, even though we consciously know that isn't possible. Mom was complaining to me yesterday about stomach pains, and I honestly don't know what to think. She goes for a CT scan on Wednesday, and if the results are ready that day, she'll head to the medical board at Petrov on Thursday to see what they say about the next steps for treatment. Honestly, I'm terrified of what that CT might show, but at the same time, I can't wait to finally see it.
How long was your mother in remission when her markers were back to normal?
Has anyone here ever tried treating with petroleum or "black honey"?

Amanda Wells75 said:Has anyone ever actually tried treating themselves with petroleum or "black honey"?

Using petroleum? Not even in my wildest dreams. If you're really feeling the urge to explore alternative therapies—whether they're unproven or just plain ineffective—please, at least pick something that isn't dangerous.

Honey is perfectly fine, provided you pick up a quality jar from a local pharmacy.

Amanda Wells75 said:Thanks for the support and the advice.
I am so incredibly sorry that your mother lost her battle with such a nasty disease so quickly after the diagnosis. I've been reading through all the posts under the Dina9 handle. We are all staying positive and holding onto hope for a cure, even while we consciously realize how unlikely that may be. My mom was complaining about abdominal pain yesterday, and honestly, I’m at a loss for what to think. She’s heading in for a CT scan this Wednesday; if the results come back the same day, she’ll be at the Petrov clinic on Thursday for a medical board meeting to figure out the next steps in her treatment plan. To be perfectly honest, I'm terrified of what that CT scan might reveal, yet I find myself almost needing to see it just so we know where we stand.
How long were your mother's markers within the normal range? Was the cancer actually in remission?
Has anyone here ever attempted treatment using petroleum or "black honey"?

Unfortunately, a full cure is difficult to hope for; at this stage, it really becomes a question of duration and quality of life. We lived our lives waiting for one test result after another, feeling that same dread every single time wondering what the findings would show. When the recurrence appeared—it had only been two or three months in remission—I truly thought I wouldn't have the strength to go through the whole ordeal all over again. But somehow, you always find the strength to keep moving forward.
Regarding those abdominal pains, the CT scan should clarify the cause, whether it's metastases or something else entirely.

hollowridge88

😢😢 I just want to say that I truly feel for all of you... my grandmother was going through something very similar during her final days... she eventually stopped talking and just spent most of her time staring blankly into space... she would scream and call out for my mom whenever they had to change her catheter, and I remember feeding her yogurt just two days before she passed, even though she seemed to be looking right through me while she ate... on that very last day, the doctor couldn't even get a blood pressure reading... she was just rasping and wasn't really conscious anymore... then, she just went quiet and fell into an eternal sleep
She was battling pancreatic cancer....

Please try to find the strength for everything you have ahead of you... hang in there, okay? 🙂

I just wanted to say thank you to everyone for all the support and the wonderful conversations... I truly appreciate it so much...
Since last night, Mom has been vomiting this dark green fluid, and about half an hour ago, she threw up more of that liquid along with what looked like a piece of meat or tissue... I feel completely helpless, does anyone know what might be happening? She isn't eating anything at all, just taking a few tiny sips of water here and there, and she’s started talking nonsense, saying things like "you've tied me up" or "let's go home"... it's like she's lost touch with reality. Her blood pressure was 100/41 this morning with a heart rate of 127... It's looking really bad, and today she actually found the strength to tell me that she's dying, asking me not to go too far away because she won't be here much longer—she says you just know when the end is coming. She had about ten minutes of lucidity today to tell me all of this,

hollowridge88, I don't really have anything profound to say, I just wanted to stop by and give you a huge hug. Hang in there 🙂 🙂 🙂

hollowridge88.. I honestly don't even know what to say...🙂

hollowridge88, we’re thinking about you and your mother...