Support resources for families dealing with cancer and other serious illnesses

Kimberly Bishop91 said:My father-in-law is fighting a bronchial tumor, and things have taken a really sudden turn for the worse over the last few days. He’s coughing up blood, he’s completely wiped out, can’t eat anything, and is on an IV drip... we've been getting all kinds of different info about various supplements, and my mother-in-law even tried calling a Bioenergeticist, but he was pretty rude and turned her away. Then we heard about this IP6 stuff, so we're going to go grab some and just see what happens. We got a contact number for Maja Mirt Bicanic, but she isn't picking up... it's just hard...

I believe things are really tough for you right now.... I guess in situations like this, wives just have to stay strong and be there for their husbands as much as possible so they don't break down. We still live with my in-laws, so I can see how incredibly hard it is for my husband. It's hardest when we're trying to talk to him and he just starts coughing and can't stop. I don't know who feels more uncomfortable in those moments.
We were supposed to have moved into our own house by now, but honestly, we just haven't had the energy to finish the renovations because we're constantly driving back and forth to New York City and we're just too exhausted for everything. We try to spend every spare moment with them.

That surgery actually gave us a lot of hope in the end, since they originally told us they wouldn't be able to operate...

A good friend of mine, who's 50, is currently battling colon cancer. He’s already gone through surgery, radiation, and a round of chemotherapy using XELODA, which he's actually handling relatively well—aside from dealing with up to 20 bouts of diarrhea every single day—so he’s feeling okay overall. But now, his doctor over at MD Anderson Cancer Center is telling him that he’ll have to cover the cost of the medication himself because the Social Security Administration denied the prescription coverage. We're talking about a massive bill of around $5,000 spread out over a few months. They mentioned an IV option, but that sounds way harder to tolerate, so I can't help but wonder how many bathroom trips he'd be facing daily if he switched to that.
The family just doesn't have the money to foot this bill.
What should they do? According to them, the doctors seem totally indifferent toward his actual recovery process. His physician wouldn't even bother asking the hospital board to approve the medication coverage. Do you think it would make any sense for the patient to switch doctors or move to a different hospital altogether? If so, where and to whom should they reach out?

We’re going to visit him >—thank God—and honestly, those herbalists and bioenergeticists are finally falling by the wayside. I personally don't have much faith in that kind of stuff; I just trust in God, and I really think you can achieve a lot through prayer. We'll pick up some > before we hit the road in the morning, so we're hoping it helps him feel better—but if it doesn't, well, at least we can hope he finds some peace from the pain....

Angela Wright said:Hey honey... I didn't even dare send you a PM... I honestly thought the worst had happened when you went silent.
What’s the actual situation right now?

Honestly, what can I even say? I don't know what to write to you all... I just sit here and read...
For these past few months, everything has just boiled down to monthly checkups, my dad's relentless optimism and will to live, and some kind of medical miracle that he's still even here.😢
Things actually looked up back in August; I was actually planning on posting here to tell everyone how you really can win through sheer willpower and Beta Glucan.🙄
Dear God, I was so happy then, and then everything just went downhill fast..
Then the "real" pain started—mumbling, sleeping constantly, incontinence, stiffness, that choking sensation in the throat, dry mouth, total constipation, depression, diabetes...
There isn't anything left to be done at this point; we’re just praying he doesn't have to suffer for too long.
The tumor is growing, the metastases are everywhere, and one has even broken through the skin on his head.😢
We are all completely frazzled. Mom has become a totally different person. I just hope that once Dad passes, we can somehow find our way back to a sense of normalcy. That’s the reality of it. May God forbid anyone ever goes through such hell.😢

Amy Hayes28 said:What am I even supposed to say? I don't really know what to write to you guys... I'm just sitting here reading.
The situation over these past few months boils down to three things: regular checkups every single month, my dad’s relentless optimism and sheer will to live, and what I can only call a medical miracle that he’s still here with us.😢
Things have actually started looking up in August. I wanted to hop on here and tell you all that it really is possible to win this fight—you just need pure willpower and some Beta Glucan.🙄
Dear God, I was riding so high, and then everything just went downhill fast.
Then the "real" pain kicked in. It was this whole downward spiral: constant mumbling under my breath, sleeping all day long, losing control over my bladder, muscle stiffness, that tight sensation in my throat, dry mouth, total constipation, depression, and diabetes...
There’s nothing left to be done here; all we can do now is hope the suffering doesn't drag on too long.
The tumor is growing, metastases are everywhere, and one has even broken through the surface on my head.😢
We’re all completely falling apart right now. Mom has turned into a totally different person. I honestly just hope that once Dad passes away, things might finally settle back into some kind of normal. That's just how it is—God forbid anyone else ever has to deal with this kind of misery.😢

Dear God.😢
Mila, I want to share something my great-grandmother used to say all the time. Back then, I brushed it off as just another old cliché, but today, it hits me with full force: "May God grant you health, but above all, grant you a sound mind." You have to stay calm and rational, no matter how desperate or grueling things get. Always remember that these are things happening to actual human beings. You absolutely have to hold onto your sanity, because you’re the one who has to keep living, and let's be honest—living is hard work. Death is the easiest thing in the world. Just try to make his remaining time a little easier. Don't obsess over how much longer he has left... he is still here with us, and you should be grateful for that. Nothing else matters.
Listen, honey, just let it go and give your soul some peace.
Pusa, just keep being that brave for me.

Amy Hayes28 said:What am I even supposed to say? Honestly, I don't know what to write to you guys... I'm just sitting here reading through everything.
...
We’re all just completely losing our minds here. Mom has turned into an entirely different person. Honestly, I can only hope that once Dad passes away, things might finally settle back down to some kind of normal. That's just how it is. God forbid anyone else ever has to deal with this kind of evil.😢

I was wondering where you’d been... honestly, everything makes sense now. We are going through an absolute nightmare right now. I just really hope we can get back to some kind of normal one day.

brightgardener8 said:I was wondering where you went... but honestly, everything makes sense now. We’re just grinding through some impossible stuff right now. I really hope we all get back to some kind of normal eventually.

Man, that sucks. When you're stuck in these kinds of impossible situations, you can't help but wonder where the hell you're even getting the strength to keep going.
Hang in there, everyone.

Just so everyone is in the loop—the Healthcare Coalition along with our own Association have sent an open letter to the Secretary of the Department of Health and Human Services, as well as all the major news outlets, regarding the skyrocketing costs of medication and our formal petition.

You can read the full thing right here.

slyseal28 said:Just so everyone is in the loop—the Healthcare Coalition and our own Association have sent an open letter to the Secretary of Health and all the major news outlets regarding expensive medications, along with a petition.

You can read the whole thing right here.

I’m starting to think Pukanic has managed to squeeze us out of the media cycle once again. First, when we were trying to step up for Alenka, everything got derailed by that scandal involving his wife, and now, even after he paid the ultimate price... in this country, people just can't see the forest for the trees.🙄

Maria Fox said:quietpilot87, give me a break...

Regarding digestion and milk... milk "isn't good" because it’s tough to digest and really hits the gut hard... plenty of yogurt and probiotics out there—Bioactive, Activia, Sensia (nothing wrong with Bioactive, and honestly, it's probably the cheapest 😉)
I don't know exactly what your mom is dealing with, but moving forward it's not recommended for people who've had colon cancer surgery: grains and high-fiber foods

She had lung cancer, which they tried to kill off with radiation, but then metastases showed up in her brain, and now she's bedridden..

She's rejecting the yogurt because it turned sour on her.. The doctor told us not to push her and just let her have whatever she wants. But that's the catch—everything she actually craves causes catastrophic digestive issues..

Dad just picked up some rice milk, so we'll see how that goes..

Amy Hayes28 said:It's the same deal here... I keep playing back all these scenarios in my head, just wondering why.
Honestly, I was thinking today about how much easier it would be if Dad just said he wanted to die—instead of him fighting to live despite everything! It feels like that's actually the one thing keeping him going. But then again, what good is desire when you're in this kind of state?
Well....
Can Mom eat normally? Like, can you give her pears, or maybe some prunes soaked in warm water, or Donat???
That helped Dad a little bit, but nothing after that. And now, out of nowhere... as of today, he's on Prosura...

I'm putting the prunes in the compote I'm making.
We haven't tried pears yet, but we definitely will.
She drinks the Donat, but it doesn't do squat. It's rough when you're stuck lying down all day—digestion just refuses to kick in..

Getting her to take an enema is basically an art form at this point..

Maybe try some dried figs too... they should be just as good
fiber-rich foods—whole grains, veggies, legumes, nuts, seeds, fruit.
I don't know, nothing else is really coming to mind right now...

Flaxseeds are excellent for digestion; you can pick them up almost anywhere—like at a CVS or Walgreens. You can toss them into any dish, but I think the best way is to stir a few teaspoons into some yogurt, let it sit for an hour or two to swell up, and then eat it. You could also add a little to soup, or whatever... they even sell ground flax, which isn't bad either—maybe even better since it won't stick to the roof of your mouth.

I also know that eating fruit yogurt on an empty stomach is great for digestion too..

Pears and prunes are also excellent, but that’s already been mentioned..
If I remember anything else, I'll write it down.

Thanks 🙂

feralcobra92 said:A friend of mine (50) is battling colon cancer. After going through surgery, radiation, and chemotherapy ( XELODA), which the patient is actually handling relatively well—aside from having up to 20 loose stools a day—they’re feeling pretty good overall. But now, the doctor over at MD Anderson Cancer Center is telling them they have to pay for the medication out of pocket because the Social Security Administration denied coverage. We're talking about costs reaching $5,000 spread out over a few months. There is an option for IV treatment, but that sounds much harder to tolerate. If they switched to that, how many bathroom trips would they be looking at daily?
The family just doesn't have the money to cover these drugs.
What should they do? According to the family, the doctors seem completely indifferent to how the treatment is progressing. The physician wouldn't even bother asking the hospital board to approve the medication. Do you think it makes sense for the patient to switch doctors or find a different hospital entirely? If so, where and who should they reach out to?

Does nobody here know anything? You all are constantly talking about this stuff! Come on, people, please react. People specifically asked me to post this question on the forum, and right now, I feel like I have absolutely nothing to tell them.

feralcobra92 said:Does nobody here know anything? You're all constantly immersed in this topic! Come on, people, react. People actually asked me to post this question on the forum, and now I have nothing to tell them.

The whole situation regarding expensive medications is a nightmare. Back in September, the Department of Health and Human Services announced that every patient would receive their therapy. But here’s the catch: any drugs not covered by the Social Security Administration are being dumped onto the hospitals. And let's be honest, those hospitals are broke. The Secretary essentially just offloaded the responsibility onto the medical centers.

If you want my advice, go to the media. It’s really the only way to prove that patients' rights are being trampled upon.

The specialists aren't the ones at fault here. They’re literally being threatened with termination if they prescribe an expensive therapy that isn't on the Social Security Administration's approved list. If you need contacts for journalists, just let me know—I can pass them along.

You can read the open letter we sent to the Department of Health and Human Services and the press over on the Association's website.

Just wanted to give a quick update—we were over at my father-in-law's place. It turns out things have spread to his lungs, but honestly, he doesn't look too bad. He has lost some weight, though, and he can still eat—his appetite is actually fine. Doctors are waiting on test results this week before they decide if he’s going to go through with radiation or not. Sending my best to everyone.

I’m looking to connect with anyone currently undergoing treatment with Tarcev, or those who have family members doing the same, whether you managed to secure it through a hospital or are paying out of pocket.
Thanks and best to everyone.
Stay brave.

Ashley Reyes87 said:Thanks for the replies—I'm going to talk things through with him and see where we land. Hoping he can help and that I can get him to understand. Cheers everyone, and thanks.

I've been reading through all your comments regarding those Kancist drops. My father is also battling sinus cancer, so I was thinking about reaching out to them about the drops myself.
Has anyone actually gone ahead and bought these? If so, what has your experience been like?
Standard medical treatments haven't left us with much hope, so this feels like a bit of a lifeline.
Thanks in advance for sharing anything you know. Any info at all would be appreciated.
Best,

Susan Ruiz76 said:0981740173 - that's Mark Rukavina's number from the Ship. I haven't called him yet—I've had the number for a few months now—but I'm kind of hesitating, and my husband isn't exactly thrilled about this stuff, so I don't want to do anything against his wishes. Do you know anything about him—can you give me some info? And what kind of illness are you looking at the drops for? I'm curious because, besides that article (I think it was in Slobodna), I've heard some personal stories too.

I'm also interested in hearing about experiences with Kancist drops. My father fell ill with sinus carcinoma five months ago, and things haven't really improved much after radiation therapy. Honestly, it feels like the doctors have just given up on him. I'm looking for any feedback regarding the drops and if anyone here has actually ordered them. I'm planning to do it myself very soon. Thanks.