Resources and support for families dealing with cancer and serious illness

When I posted that question about why people were disappearing from the forum the other day, I honestly wasn't expecting this massive wave of bad news... Is there anyone out there with any good updates????

Angela Wright, I really hope you're hanging in there. Can you tell me, while your mom was going through the Temodal and radiation combo, was she staying in the hospital or at home? And were you guys giving her any of those supplements we talked about (like Propolis, noni, etc.) during that time? To be honest, they told me today that we aren't allowed to give my mom anything (specifically, I asked about Beta-glucan). Now I'm just sitting here wondering what the hell we're supposed to do... ah.

brightgardener8 said:When I asked about people dropping off the forum the other day, I definitely wasn't expecting this massive wave of bad news... Is there anyone with a positive update out there????

Angela Wright, hang in there. Can you tell me if your mom was staying at the hospital or at home while she was undergoing the Temodal and radiation combo? And were you giving her any of those supplements we discussed (Propolis, Noni...) during that period? To make matters worse, they told me today that we aren't allowed to give my mom anything—specifically, I asked about Beta-glucan. Now I'm just sitting here wondering what the hell we're supposed to do... ugh.

My mom stayed home for most of it, maybe just the first couple of days of radiation and chemo, and I kept giving her Noni and Propolis even then (early on, we even managed it through the feeding tube). Look, don't go expecting a green light from the doctors when it comes to alternative stuff, because you're probably not going to get one. Some doctors are skeptical because if things actually improve, they won't be able to pinpoint the exact cause; others claim it might be counterproductive, and some just flat-out don't believe in anything outside their textbooks.
My advice?
Keep doing what you feel is right and ignore them!👍

brightgardener8 said:When I posted about people disappearing from the forum a few days ago, I definitely wasn't expecting this flood of bad news... Is there anyone with any good updates????

Angela Wright, hang in there. Can you tell me if your mom was in the hospital or at home during her Temodal + radiation therapy? Were you giving her those supplements we talked about (Propolis, noni...)? Because they just told me today that we can't give Mom anything (specifically, I asked about Beta-glucan). Now I'm just sitting here wondering what on earth we should do... sigh.

I'm staying quiet because, just like you said, I only have bad news to share. Mom hasn't woken up in days. And since the tumor hit her eye area... man, you wouldn't even believe what it looks like (just praying it doesn't pop out). Even though the doctors insisted, we didn't want her stuck in the hospital, so we've been handling her dexamethasone and IVs ourselves at home.
The radiation went okay, but after every single cycle of Temodal, she ended up hospitalized because her bone marrow was totally crashing.
She didn't even finish chemo because the tumor just went rogue after the 4th cycle, and now she's in this state... she's just a shadow of the woman she was, wasting away and not waking up.
Regarding the Beta-glucan, we were actually giving it to her, but a friend of mine who's a pharmacist told me it’s not a good idea to mix it with Medrol. Her explanation was basically that Medrol is an immunosuppressant, while Beta-glucan is an immunostimulant, so combining them might be counterproductive. To make matters worse, it feels like the tumor started spiraling right around the same time we started the Beta-glucan...

Nicole Edwards76 said:I haven't been posting much because—just like you mentioned—all I have are bad updates. Mom hasn't woken up for days now. And since the tumor has hit her eye... well, you wouldn't believe what it looks like (if only it weren't about to fall out entirely). Even though the doctors pushed for it, we didn't want her staying in the hospital, so we've been managing her dexamethasone and IVs at home ourselves.
The radiation went okay, but after every cycle of Temodal, she ended up hospitalized due to bone marrow depression.
She didn't even finish the chemo—the tumor just went rogue after the 4th cycle—and this is where we are now: just a shell of the woman she was, wasting away and unresponsive.
Regarding Beta-glucan, we were giving it to her, but then a friend of mine—who is a pharmacist—told me it isn't a good idea to combine it with Medrol. Her reasoning was that if Medrol acts as an immunosuppressant (if that's the right term), and Beta-glucan is an immune stimulant, then using them together could be counterproductive. To make matters worse, it seemed like the tumor started spiraling right around the same time we began the Beta-glucan.

On my end, I actually had two different pharmacists tell me the exact opposite—completely independent of one another (and one of them is a seasoned professional with years of experience)—who said there is no connection at all.
Though, I suppose I have seen someone mention exactly what you said on a forum somewhere else...

😕 😕

Who can truly say?
Is there perhaps a doctor or a pharmacist lurking on these boards who might help us solve this enigma?🙏

Honestly, reading this stuff makes me want to throw up...😢

brightgardener8 said:Reading this makes me want to throw up...😢

Look, brightgardener8, let me tell you something: when you're dealing with cancer, there is no such thing as "right" or "wrong." People just fight the way they know how to fight. If there were a single "correct" way to handle this, cancer would be cured with a simple round of antibiotics. Sometimes you have to follow your gut—that raw, animal instinct telling you what might actually help. For instance, back when my mom was sick, I came across Propolis a few times and just brushed it off. But then, when that same annoying commercial popped up on my screen for the hundredth time, I figured maybe God was trying to send me a sign, and since that day, my mom's been on Propolis. Doctors mostly spit on things like that, treating them like they're useless, but I’m still giving it to her, and who knows how much better things would be if I hadn't?
Find something to hold onto and grip it tight. Believe in it if it feels right to you, regardless of what anyone else thinks or says. Faith can pull someone back from the brink!😘

Carol Ramirez said:an infusion of Aloa, chicory, wine, and Propolis, along with Echinacea drops and royal jelly.

Would you be so kind as to write out the recipe for preparing that specific tonic for me?
thanks in advance👍

goldenhound16 said:Could you write down the recipe for making that tonic for me?
Thanks in advance👍

Take 300g of Aloe vera cactus leaves and run them through a meat grinder.
The plant should be at least 18 months old, and make sure you haven't watered it for about 5 days before using it.
700g of pure black wine
250g of chicory (you can find products from Frank-Chicago)
400g of honey with honeycomb included
(Depending on the specific version of the recipe, some people also add 2g of royal jelly and 40g of pollen, though it varies from person to person)😕 😕
500g of 96% alcohol

Mix all the ingredients thoroughly and pour them into a dark bottle (I’d recommend a 5-liter one) that seals tightly. Let it sit in a cool, dark place for 5 days.
After that, strain the liquid and follow this schedule:
- For the first week: one teaspoon three times a day, at least an hour before meals—though two hours is even better.
- For the following weeks: one tablespoon three times a day, an hour before meals. Once you get settled, continue with one tablespoon three times a day an hour before eating.

This gradual approach helps the body adjust to the preparation, because it cleanses the system quite intensely, which might lead to things like looser stools or similar effects.
You can use it for 3 months, take a short break of about 20 days, and then start again.

By the way, you can usually pick up the Aloe vera cactus at the Trešnjevec market!🙂

goldenhound16 said:Hey, could you write out the recipe for making that drink?
thanks in advance👍

I have this one too, though there are some slight variations in the ingredients and how they're balanced.

Take about 30 decagrams of fresh Aloa cactus leaves and run them through a meat grinder. If you can, try to use a plant that’s between one and five years old—honestly, the older it is, the better. Also, a little tip from my own experience: make sure you haven't watered the plant for at least five days before you use it.
7 oz of all-natural red wine.
Two slices of pear.
400 grams of fresh spring honeycomb.
Half a liter of hard liquor.
Mix all the ingredients together in a dark glass bottle and let it sit in a cool, dark spot for five days. Once that time is up, strain the syrup. I always make sure to only pour out enough for one week at a time. Leave whatever is left in the bottle, keeping it tucked away in that same cool, dark place.
For the first five days, take one teaspoon three times a day, about an hour before your meals.
Then, about an hour before meals, take one tablespoon three times a day.
The treatment course typically lasts about three weeks, though I’ve found that sticking with it for two months is really what's recommended.

Amanda Williams64 said:Take 300g of Aloe vera cactus leaves and run them through a meat grinder.
The plant should be at least 18 months old, and make sure you don't water it for about 5 days before you use it.
700g of pure black wine
250g of chicory (you can find this from Frank-Chicago)
400g of honey with honeycomb included
(You can stir in 2g of royal jelly and 40g of pollen—though honestly, this part varies depending on which recipe you follow; some people include it, some don't)😕 😕
500g of 96% alcohol

Mix everything thoroughly and pour it into a dark bottle (a 5-liter one is recommended), seal it tight, and stash it somewhere cool and dark for 5 days.
After that, strain the liquid and start taking it according to this schedule:
- For the first week, take one teaspoon three times a day, at least an hour before meals—though two hours is even better.
- For the following weeks, move up to one tablespoon three times a day, an hour before meals, and then finish off the rest by taking one tablespoon three times a day an hour before eating.

The idea here is to introduce it gradually so your body can adjust, because this stuff is an incredibly powerful cleanser. It’s quite possible you might experience looser stools or something similar while your system reacts.
You can use it for 3 months, take a short break of about 20 days, and then start again.

By the way, you can usually pick up those Aloe vera cacti at the Trešnjevec market!🙂

Feel free to add the pollen, but I wouldn't bother with the royal jelly since there's so much question about how long those active ingredients actually stay potent! You're much better off taking it in freeze-dried form (which is exactly why they freeze-dry and dry it out in the first place)!!!

Hang in there, everyone. What else can I even say??
What I’m about to tell you probably doesn't belong in this thread (moderators, please forgive this outburst, it won't happen again), but it is deeply connected to my favorite topic: doctors. So, my sister (45 years old) has severe discopathy; her nerves are pinched all over the place. A year ago, they patched up a ruptured disc, but they told her she needs another surgery to decompress the nerves and clear out some channels. Not only is the surgery delicate, but they also informed her that even if everything goes perfectly, her mobility will be reduced to 60%—though she wouldn't be in pain. Still, she’ll never be "better"; her condition is incurable. Since things are already so dire, she decides to head to Chicago to see a legendary neurosurgeon. He comes to our city once a week to perform examinations, and he consistently collects his fees in cash, even though everything is officially filed under the local trauma hospital. In early January 2007, he tells them, "Don't worry, just come down to Chicago and we'll take care of it." When my sister asks how, he says, "Just call this number and you'll get all the details." She calls (a cell phone!!) and... his wife picks up! What a strange way to run a hospital. He just needs her to get all the tests done so the anesthesiologist can review them, and if everything looks good in a month, she can come to Chicago. She rushes to pay for all the tests (normally there's a six-month wait anyway), sends them off to Chicago, but when she follows up, they say, "Oh, we can't right now, we're slammed, call back in 15 days." She waits, pacing nervously, and finally hits that 15-day mark. She calls... and oh, wait, "not right now, we'll contact you next week." Next week comes and goes, and there isn't a peep from them. She tries again, and they're like, "Yeah, yeah, we know, we're fully booked, but it'll definitely be by the end of the month" (and it's already February). She packs her pajamas and winter dresses, gets her bags ready, and keeps waiting to finally make the trip to Chicago. When the time finally comes, she calls, but... ah, you know, "your test results have expired, you have to redo everything." But, but... she argues, "but you told us it would be..." and they respond, "If you aren't satisfied, you're free to change hospitals!!!" Not to mention the headache of dealing with the disability commission and all the stalling in the meantime... I won't linger on it, but the story just stretches out like: call / you're in line for 15 days / oh, not now / in two weeks... and this drags on until May 1st!!!!! Then they said: "It'll definitely be May 11th. If not the 11th, then the 15th, for sure!!" My sister packs her summer pajamas and summer dresses, grabs her bags, and heads toward the hospital, praying she can finally get this over with. The 11th comes, then the 12th... nothing. The 15th passes, then the 16th... nothing. Then she starts calling, but the cell phone is turned off. She tries today, tomorrow—it's always off. In the meantime, she was pulling strings everywhere until she finally got the name of a woman from a city near San Francisco who had undergone surgery with this famous specialist just a month prior. She calls her, and the woman tells her: "They played me the exact same way for three months, until I realized they were just waiting for me to pay. Once I paid (how, how much, it doesn't matter now), they told me to get the tests done. It took me 20 days to get them, I sent them off, and two days later, I was under the doctor's knife!!!!!!"
I've badgered you all a bit, but I just had to get this off my chest. This is how they treat someone living with an incurable semi-disability. 🙂 Man, things really need to change around here. Moderators: I know, I know, I won't bring this kind of stuff up here anymore.

George Palmer7 said:Hang in there, everyone. What else can I say??
What I’m about to tell you probably doesn't belong in this thread (moderators, please forgive this outburst, it won't happen again), but it’s deeply connected to my favorite subject: doctors. My sister (45 years old) suffers from severe discopathy; her nerves are pinched everywhere. A year ago, they repaired a ruptured disc, but they told her she needs another surgery to decompress the nerves and clear out certain channels. Not only is the procedure incredibly delicate, but they also told her that even if everything goes perfectly, her mobility will be permanently reduced to about 60%. She'll be pain-free, sure, but she'll never be "better"—her condition is incurable. Since she was facing that reality, she decided to head to Chicago to see a legendary neurosurgeon. This guy comes to our city once a week to perform consultations, and he collects massive amounts of cash under the table, even though everything is officially filed under the local trauma hospital. In January 2007, he tells her, "Just come down to Chicago and we'll take care of it." When my sister asks how, he says, "Call this specific number and we'll give you all the details." She calls—it’s a cell phone!!—and a woman answers... his wife! What a bizarre way to run a hospital. He just needs her to get all the tests done so the anesthesiologist can review them, and if everything looks good, she can head to Chicago within a month. So, she rushes to pay for all the tests (usually there's a six-month waiting list) and sends them off to Chicago. But when she follows up, they say, "Oh, we can't right now, we're swamped, call us back in 15 days." She waits, fidgeting, and finally hits that 15-day mark. She calls... and they say, "Actually, no, we can't do it now, we'll contact you next week." Next week rolls around and passes, and there's total silence. She decides to call again, and they give her the usual: "Yeah, yeah, we know, we're fully booked, but it'll definitely be at the end of the month" (and it's already February). She packs her heavy winter coats and warm clothes, bags packed, just waiting for the chance to go to Chicago. When the time finally comes, she calls, but... "Ah, you know, your test results have expired, you have to redo everything." But—but!—she argues, "You specifically told me it would be..." and they respond, "If you aren't satisfied, feel free to find another hospital!!!" Not to mention the constant fighting with the disability commission and all the bureaucratic nonsense in the meantime. I won't drone on, but it's just one endless loop of calling, being told "you're in line for 15 days," then "not now, maybe in two weeks"... and this dragged on until May 1st!!!!! Then they finally said: "It'll be May 11th for sure. If not the 11th, then the 15th. Definitely!" My sister packs her summer dresses and light clothes, grabs her bags, and heads toward the hospital hoping to finally put this behind her. The 11th comes, then the 12th... nothing. The 15th passes, the 16th passes... nothing. Then she starts calling, but the cell phone is turned off. She tries today, she tries tomorrow, it's always off. In the meantime, she's been hunting for leads everywhere until she finally gets a contact for a woman from San Francisco who had undergone surgery with this "famous expert" just a month prior. She calls her, and the woman tells her: "They played me the exact same way for three months. It wasn't until I realized they were just stalling until I paid that I figured it out. Once I paid (how or how much, it doesn't matter now), they told me to get my tests done. It took 20 days to get them finished, I sent them over, and two days later, I was under the doctor's knife!!!!!!"
I've vented a lot, but I had to tell someone. This is how they treat someone living with an incurable semi-disability. 🙂 Seriously, things need to change here. Moderators: I know, I know, I won't bring stuff like this up here anymore.

This absolutely belongs in this thread because this is a story most seriously ill people have to endure.
Pure horror and madness!😱

My advice to anyone facing this exact scenario is pretty simple: if you already know you're going to have to shell out the cash anyway, just head abroad for the surgery. At least then you'll actually know what you're paying for, you can be sure everything is being done legally, and you won't be stuck sitting around waiting indefinitely.

Well, here I am, unfortunately bringing some pretty heavy news today.
So, my mom just had surgery on her right breast—they ended up removing everything because it had already spread to the lymph nodes. The surgery itself went really well, and the surgeon mentioned he did a thorough job clearing it all out... but, the pathology reports came back showing it’s Stage 3 cancer. Now she’s looking at some really intense chemotherapy, radiation, and oral medications too. Honestly, we're all in a bit of shock because both our family and the doctors were really hoping it would be a lower stage. Her doctor told her straight up that things are serious, but emphasized that there is definitely still hope. She finally made it home from the hospital today and handled the actual procedure incredibly well, though she's feeling completely emotionally drained right now—which is totally understandable, since she's terrified. She told me she’s going to fight with everything she has because she just wants to be here with her family...😘

I really wish I had some good news to share so we could brighten up this thread a little, but life just keeps throwing curveballs at us. Oh, and since we're talking about medical experiences, I have to say that despite the diagnosis, the medical team was absolutely wonderful and treated her with such professionalism.

Now we're bracing ourselves for six really tough months ahead... I'm just praying that everything turns out okay...🙂

Angela Wright, I haven't forgotten about our plan to head out to a patio somewhere to grab some ice cream or cake! We’ll make it happen in the next few days; even though this news didn't exactly lift the weight off our shoulders, we’re going to enjoy those little moments while we can...🙂

George Palmer7
What if that neurosurgeon was actually from San Francisco instead of Chicago? This whole story sounds way too familiar to me (been there, done that)...
Btw, even though our topics are pretty dark, I gotta say your posts always crack me up.👍
You didn't finish telling us what happened with your sister in the end? Did she get the surgery or is she just gonna be stuck buying autumn pajamas?...

Oh, Ivana, I am so incredibly sorry... I can only imagine what you're going through right now...
I have a feeling I'll be in the exact same boat once my mom finally gets her test results back... just total limbo...

Carol Sanchez2 said:Angela Wright, I haven't forgotten about taking Mom out to sit on a patio somewhere for some ice cream or cake. We’re going to make that happen in the next few days; even though these test results didn't exactly take a weight off our shoulders, we're going to enjoy ourselves while we still can.🙂

😘

Hey Ivančica, don't let this crush you.😳 Remember what the late Zazie used to say about how things are always fluctuating. Just because this one lab result looks bad doesn't mean the next one will follow suit. It’s actually a huge win that the doctor managed to clear everything out so effectively; now the chemotherapy will just step in to mop up any lingering cells. Your mom is going to be fine, you'll see.🙂

Terry Rogers said:Oh, Ivana, my heart just breaks for you... I can only imagine what you're going through right now...
I honestly think I’m going to be in the exact same boat once we finally get the results back for my mom... it's just a coma...

Yeah, it really is a coma. Honestly, the absolute worst part of this whole thing is knowing exactly what kind of heavy thoughts and feelings she’s having to fight through right now; I would give anything to just lift that discomfort away from her, but there’s nothing I can do... You just can't pull someone out of their own skin.
God, I just hope that as time goes on, I'll eventually find a way to adapt to this new reality. Please, keep me posted on how things are going with your mom—maybe we can actually help each other out with some advice. Sending so much luck your way!😳

😘

Angela Wright said:😘

Hey Ivančica, please don't let this get you down too much😳. Just try to remember what the late Zazie used to say about how everything in life is constantly oscillating—just because this specific test result looks bad doesn't mean the next one will be stuck in the same place! It’s actually a huge win that the doctor was able to clear everything out so effectively, and now the chemotherapy is going to step in and take care of any lingering cells. Your mom is going to be just fine, you'll see🙂.

Thanks, honey! Having support from people like you who truly understand what it's like to walk through these heavy moments means the world to me...
It is honestly so beautiful to see someone find the strength to encourage others even when they're carrying their own burdens... I'm definitely going to try to follow your lead and do the same. I really feel like these tough situations are the things that make us stronger in the end... Thank you so much, to you and everyone else! The fight is officially on...😘

Finally, some actual good news... Dad's latest results are in:
The CYFRA 21-1 level is back within the population's reference range (0.787 ng/mL)—or, to put it in plain English: they dropped by another 0.002, which falls right into the category of normal cellular activity seen in healthy people. Such an incredible victory—especially considering that back on January 29th, the value was sitting above 11!! I am talking about tumor markers, of course. I just really hope Dad feels even a tiny bit more at peace now...
Everyone, please stay strong. There is always hope—never let it slip away!

Hi everyone.
More bad news... I haven't even fully processed my father's passing yet, and now my paternal grandmother has passed away too. I just can't seem to take this much loss in such a short window of time.
I know she was elderly and this is just the natural order of things, but it all feels far too much like a reminder of him.