Support resources for families dealing with cancer and other serious illnesses

Kimberly Green23 said:This is my very first time ever posting on a forum... I have spent quite some time reading through this entire thread—though I am currently lagging behind on my work—and I found myself celebrating all your positive test results while simultaneously mourning for your lost loved ones. You have already provided so much comfort, yet I find myself in need of your collective wisdom. My stepfather has been diagnosed with gastric adenocarcinoma. Just two months ago, he was perfectly healthy, until nausea began to set in. He originally assumed it was simply the result of overindulging in dessert... but when even a strict diet failed to settle his stomach, he went for an evaluation. An ultrasound revealed a slight thickening of the stomach wall, which led to a diagnosis via gastroscopy and biopsy. His markers didn't show anything unusual, and the CT scan showed only changes in the stomach and something undefined near the adrenal gland. He underwent surgery three weeks ago, though it was ultimately unsuccessful. They informed us they merely performed a bypass so he could actually eat, because removing the tumor was impossible; it has apparently permeated the entire abdominal cavity, several organs, and become entwined with the main vein and the aorta. Naturally, they provided us with a prognosis—because we all just love those, don't we?—offering one timeline of about a month, and another suggesting three to five months. No further treatment options were even mentioned. For now, he is sticking to soft foods, and fortunately, his appetite remains, even if the meals are minuscule. What troubles him most is what he describes as a sort of "saliva" that triggers vomiting after certain meals—not always, but most frequently in the evening. He claims it is a clear liquid, which is why he thinks it is saliva. Has anyone here dealt with similar experiences, and how did you manage it? I try to tell him that this is likely a normal occurrence so soon after surgery, but I suspect I am not being particularly convincing... Oh dear, I have rambled quite extensively. Please forgive me.

Hello,

I am so deeply sorry that the diagnosis isn't something more hopeful, and unfortunately, I know nothing regarding stomach cancer. All I know is that one shouldn't rely solely on a doctor's prognosis, as recovery is such an individual journey for each of us. My mother was told she would barely survive a few months to a year, yet here we are, fourteen months later, and she is doing fine. I am certain someone here will be able to provide the answers you are looking for.

I cannot help but wonder... wouldn't it be possible to surgically remove at least a portion of the organ, perhaps something that might aid in recovery or reduce the tumor's presence?

In any case... please stay strong and keep writing. This is a sanctuary for all of us who wish to share our grief, our anxieties, and our will to live... kiss

Linda Campbell said:An oncologist from Austria told us he absolutely recommends taking selenium, certain enzymes, and mistletoe injections... and after chemo, you have to drink massive amounts of fluids just to flush that stuff out of your system as fast as possible so the body can actually start recovering. It’s such a crucial thing...
Mistletoe injections are used all over the world—they're basically standard practice alongside all therapies for serious illnesses like this, especially with chemo, but here in America, doctors just shrug their shoulders and act like they have no clue about anything being used abroad. They don't even bother educating themselves on things that aren't directly part of their specific niche. Our doctors didn't even know what beta Glucan was, let alone other products like it...
The mistletoe injections work as anti-carcinogens and boost your immunity. Along with everything else, don't forget about diet, and definitely herbal teas. Look up which teas Breuss recommends for specific types of cancer. You should also definitely look into that product I mentioned to you the other day—from Natura Viti. Give them a call. Those are the enzymes you need.

Linda Campbell, honestly, what would I do without you (and everyone else, obviously!)!!!

I went to see the oncologist this morning—she was super nice, a solid 5 out of 10... except, of course, she couldn't tell me if taking beta Glucan and native propolis during chemotherapy might cause any side effects so she recommended my mom shouldn't take them during that time. Can anyone share their experiences regarding this??? Because if she stops taking those supplements now, how is she supposed to boost her immunity at all...

I don't even have to mention that she knows NOTHING about mistletoe injections! I got the impression she thinks it's some unverified herbal concoction... Meanwhile, I'm busy researching where to get them—maybe a pharmacy near Dolac, or even sourcing from Germany...
I'm relying on the experiences of those of you who've gone through something similar, but it would really mean something if an oncologist actually had knowledge about things that could support standard therapy. This way, every single step feels uncertain because we're just left making amateur guesses.

The diet has been completely overhauled since the diagnosis (not counting the hospital days when, after surgery, she was served heavy veal, huge steaks, mashed potatoes, and salad—half of which she couldn't even touch)... and she's drinking herbal tea based on a nutritionist's recommendation plus matcha for a change

Mom starts her first cycle on Monday (out of the six planned). Fingers crossed 🙂
The oncologist also mentioned that the therapy is fairly mild and side effects (like hair loss or nausea) are rare, though oral cavity reactions are more common... We'll see...
Thanks!

The thing we all dreaded most has finally happened. Our dear Alenka Zirdum passed away last night at just 31 years old. The funeral is scheduled for tomorrow at 3:00 PM at the city cemetery in Slavonski Brod. Rest in peace, dear friend.

Could things have gone differently if Yondelis had arrived sooner? Could we have all done more?
I truly believe we could have.

Hey everyone. My heart goes out to slyseal28—it’s just devastating when someone so young is taken. Am I lucky? Honestly, I don't even know how much longer my companion will be by my side. Three years ago, it was thyroid cancer. Hospitals, recovery, then three months of pure hell wondering if it had spread... thank God it hadn't. Now, here we go again. Tumors on both ovaries. Back to the hospital, having the ovaries removed, and they took the uterus too just to be safe. And wouldn't you know it, luck is on my side once more; I caught it in time. It hasn't spread. I'm in recovery now. I'm no coward, and I'm trying to stay positive, but you can't help but wonder what the third act is going to be, and if I'll be fast enough to beat it next time.

That question about whether we could have done more really hit home. I think you can always do more, but would it actually change anything? This evil is inside us. I truly believe it's stronger than any of us.

copperfox7 said:Hi everyone. My heart goes out to slyseal28; it’s truly devastating when someone so young passes away. Am I lucky? I honestly don't know how much longer my own companion will stay by my side. Three years ago, it was thyroid cancer—hospital stays, recovery, and three months of agonizing uncertainty over whether it had spread. Thank God, it hadn't. Now, here we are again: tumors on both ovaries, more hospital visits, and the removal of both ovaries and the uterus just to be safe. And wouldn't you know it, luck was on my side once more; I caught it early. It hasn't spread. I'm recovering now. I'm not a coward, and I try to maintain a positive outlook, but logically, the question inevitably arises: what comes third, and will I be fast enough this time?

Her question about whether we could have done more really struck a chord with me. I suspect there is always more that can be done, but would it have actually changed the outcome? This evil exists within us. I fear it is simply stronger than any of us.

If Alenka had received the Yondelis Alenka treatment in the second month, while she was still able to walk and eat—I am certain things would have been different. She might not have been fully cured, but she might have gained a few more years. That's the right that was stripped away from her. They didn't give her a fighting chance. It’s tragic, and frankly, unforgivable. This is how they treat all the critically ill. They turn their backs instead of helping them fight for just one more year of life.

Alenka didn't get the medication until the fifth month—May 19th! We had been fighting for that drug since the second month, knocking on every single door available: from the President to the Secretary of Health, Medicare, even the media. The only ones who actually responded were America Live, the local news, The Washington Post, and some online portals. Nova TV and the investigative teams at the big networks never bothered to respond to us. RTL filmed a segment but never actually aired it.

That is why I say we all could have done more.

I feel terrible... I didn't realize the full story behind the medication, so I really shouldn't have said anything. It breaks my heart to think about any life being lost, especially if there was actually a way to help.

shadowmason6 said:Linda Campbell, if it weren't for you (and everyone else here, naturally!)!!!

I visited the oncologist this morning—she was perfectly lovely, truly five-star service... except, of course, she couldn't tell me whether taking beta Glucan and Native Propolis alongside chemotherapy might trigger any side effects, so she recommended my mother avoid them during treatment. Can anyone share their own experiences regarding this? Honestly, how am I supposed to bolster her immunity if we have to stop these supplements now...

I don't even need to mention that she knows absolutely NOTHING about the Imele injections! I got the impression she thinks it's some unverified herbal concoction... Meanwhile, I am personally looking into supply chains—pharmacies near Dolac, or perhaps sourcing from Germany...
I am relying on the lived experiences of those who have walked a similar path, but it would be a relief if an oncologist actually possessed knowledge about things that could complement standard therapy. As it stands, every step feels precarious, left entirely to our amateur guesswork.

Her diet has been overhauled since the diagnosis (not counting the hospital days when, following surgery, she was served heavy veal stew, massive steaks, mashed potatoes, and fresh salad—half of which she couldn't even touch)... she’s also drinking herbal tea per a nutritionist's recommendation, plus matcha for a metabolic shift

Mom starts her first cycle on Monday (out of six scheduled). Keep your fingers crossed for us 🙂
The oncologist did mention that the treatment is relatively mild and side effects (like hair loss or nausea) are rare, though oral cavity reactions are more common... We shall see...
Thanks!

First, I want to express my deepest condolences regarding Alenka's passing. It is truly devastating that this cursed disease we are all fighting has claimed yet another young life, unfortunately.

My mother took both beta Glucan and Native Propolis (liquid) throughout her chemo; in fact, she stayed strictly on them. Since she didn't have a stomach, we would just open the capsules for her.
By all means, one must follow medical instructions, but I don't believe in sticking exclusively to them. One should arm themselves with other experts too—nutritionists, homeopaths, second opinions, and so on. Besides, it's different for every body; everyone reacts uniquely.

copperfox7 said:Hi everyone. My heart goes out to slyseal28; it is truly devastating when someone passes away at such a young age. As for myself... am I lucky? I honestly don't know how much longer my companion will stay by my side. Three years ago, it was thyroid cancer—hospitals, recovery, and three agonizing months of wondering if it had spread... thank God, it hadn't. Now, here I am facing it all over again: tumors on both ovaries, hospital stays, and the removal of my ovaries and uterus just to be safe. And imagine, once again, luck was on my side; I caught it in time. It hasn't spread. I'm currently in recovery. I wouldn't call myself a coward, and I try to maintain a positive outlook, but logically, one cannot help but wonder what the third act will be, and whether I will be fast enough when that time comes...

The question of whether we could have done more really touched me. I suspect one can always do more, but would it have changed anything? This evil resides within us, and I fear it is far more powerful than we are...

Hello,
I am so sorry you are facing cancer once again and dealing with all this anxiety. Perhaps it is best not to dwell on what might come next while everything from the past went well! The priority right now is for you to recover fully, regain your strength, and ensure nothing shakes your courage! That is simply the nature of life. You must remain brave, because fortune tends to favor the bold!

We all find ourselves asking, "What could we have done to make things better?" but in reality, we should strive to do the same thing every single day: keep moving forward and keep believing! Don't let your emotions overwhelm you. Wishing you a smooth recovery! 👍

kisses

slyseal28 said:The very thing we all dreaded has finally come to pass. Our dear Alenka passed away last night at only 31 years old. The funeral is scheduled for tomorrow at 3:00 PM at the city cemetery in Slavonski Brod. Rest in peace, dear friend.

Could things have taken a different turn if Yondelis had arrived sooner? Could we all have done more?
I truly believe we could have...

It is deeply regrettable that things couldn't be different, that her fate wasn't kinder or easier... it is a tragedy that she left us so young. It is heartbreaking that there was no progress, and that it takes a catastrophe like this for people to realize that solutions actually exist—that medicine and salvation are within reach, yet circumstances conspire to prevent them from being used...

I cannot say for certain how much more could have been done beyond what you women fought for on her behalf. Looking at the petition, it seems many still don't grasp that every single voice carries weight...

It is such a shame that Alenka had to die, and that only now will the avalanche of questions, problems, and potential solutions begin to move...

This news has left me quite shaken and caught completely off guard...😢

shadowmason6 said:Linda Campbell, oh, how I would be lost without you (and the rest of you, naturally!)...

I visited the oncologist this morning—she was perfectly lovely, a true five-star professional... except, of course, she couldn't tell me whether taking beta Glucan and native propolis alongside chemotherapy might trigger any adverse side effects, so she suggested my mother avoid them during this period. Can anyone share their own experiences regarding this? After all, how is one supposed to bolster the immune system if we have to stop these supplements now...

Not to mention, she seemed to know absolutely NOTHING about the Imele injections. I got the impression she views them as some unverified herbal concoction... Meanwhile, I am busy researching supply chains—looking at pharmacies near Dolac, or perhaps even sourcing from Germany...
I am relying on the lived experiences of those who have walked a similar path, though it would be quite something if an oncologist actually possessed knowledge about things that could support standard therapy. As it stands, every single step feels precarious, left entirely to our own amateur assessments...

Her diet has been completely overhauled since the diagnosis (not counting those hospital days when, following surgery, she was served heavy veal stew, massive steaks, mashed potatoes, and fresh salad—half of which she couldn't even touch)... and she’s drinking herbal teas as recommended by her nutritionist, plus some matcha for balance...

Mom starts her first cycle on Monday (out of six scheduled). Keep your fingers crossed for us 🙂
The oncologist also mentioned that the treatment is relatively mild and side effects (like hair loss or nausea) are rare, though oral inflammation is more common... We shall see...
Thank you!

Monday will be here before we know it, the cycle will begin, and I truly hope everything goes smoothly. Please don't let Mom dwell on the side effects—the less she worries, the easier the chemo will be to bear...

Regarding the Imele injections—it seems my own mother received them prior to starting chemo, upon her oncologist's recommendation...

Even though her immunity dropped suddenly, her doctor was quite skeptical about supplements, so she stopped the Imele as soon as the chemo began; aloe vera products weren't advised either to avoid potential side effects or contraindications. For the native propolis, he gave the green light, so whenever Mom felt the need, she would take a tablet with a meal, though she didn't overdo it (maximum three a day). Incidentally, my father bought some sort of powdered supplement for her while he was in Italy (or maybe Canada). I can't recall the name, only that it was packed with vitamins and minerals and was quite expensive, but in the end, the oncologist said it contained something that would only cause harm (though I honestly can't remember what that was). She is currently taking beta Glucan, per the doctor's advice...

I am sorry I don't have better information and that I am acting so uninformed, but my father refused to let me know what was happening with her at any point. This is simply what I managed to remember from the month I spent by her side...

Hang in there! Stay strong!

Dear Minister,
Do you ever lie awake dreaming about a little girl with blonde curls and big blue eyes, sobbing for a mother who is never coming to pick her up from preschool? You lacked both the courage and the decency to simply say "no." You held every bit of state and constitutional authority necessary to help her, yet you chose to turn your back and order your subordinates to "study" her case instead.
Listen, Minister, you’re a politician. Tell me, what does a person like you actually value? Is it just your seat at the table? Is it my vote? What do people even call "values" these days?
Personally, I hold you and the entire political establishment responsible for the death of a mother whose child never knew her to be healthy. She was a wonderful woman—someone I met once who won my heart instantly. She was my peer, an American through and through, someone who loved this country, and while fellow Americans stepped up to help her, you didn't. You aren't one of us!

Sleep well tonight knowing the blood is on your hands. You have one less vote to worry about. Mine. Not that we ever meant anything to you anyway.

Angela Wright said:Dear Minister,
will you ever dream of that little girl with blue curls and wide blue eyes, sobbing for a mother who will never show up at her preschool again? You lacked both the courage and the basic decency to simply say "no." You held every bit of state and constitutional authority required to help her, yet you chose to turn your back and instructed your subordinates to merely "study" her case.
Mr. Minister, you are a politician. Tell me, what does a person in your position actually value? Is it just your seat in office, or perhaps my vote? What even constitutes a core value in today’s political landscape?
Personally, I hold you and the entire political establishment responsible for the death of a mother whose child never knew her to be healthy. She was a wonderful woman—someone I met once who won my heart instantly. She was my peer, an American through and through, someone who loved this country and received help from fellow Americans, but not from you. You aren't truly one of us!

Sleep soundly tonight knowing the weight of your responsibility. Just know that you have one less vote to count. Mine. Though, I suppose to people like you, we only exist to serve your interests.

I sign my name to these words as well.

Alenka, rest in peace! I hope you've found a much better place now.

Alenka, may she rest in peace..😢

Is that idiot of a minister actually going to step down? Or does he have a few extra lives left? Is one person dying apparently not enough for him??

The whole damn system is broken, especially when you factor in those puffed-up, empty-headed assholes they call politicians.👎

It’s honestly heartbreaking. We find ourselves stuck in this cycle of feeling lost, helpless, and completely speechless on a nearly daily basis lately...
Alenka, I truly believe you've found the peace you deserve. You fought those impossible odds with such incredible grit and heart, and now you'll be watching over your loved ones just like an angel would...

Rest in peace, dear Alenka. My deepest, most sincere condolences go out to her family.
Let’s be real—we all could have done so much more, and frankly, we should have. What actually happened just wasn't enough, and that leaves such a bitter taste in my mouth. God, please give strength to her family, her husband, and her little girl as they navigate through these incredibly dark times.😢
And as for you, (sir) Secretary and all those government officials— I sincerely hope you don't sleep easy at night 😠not until us regular folks can finally live with dignity. All we ever wanted was a shot at life and the basic right to medical care!!!

My heart truly goes out to Alenka's family and everyone who knew her personally.

The whole situation is just... honestly, I am absolutely livid at everything—the Secretary, the entire healthcare system, all of it...
Kudos to slyseal28, Angela Wright... and everyone else trying to shine a light on these issues and get the public to actually pay attention. If I wasn't lurking on this forum, I probably wouldn't even be as aware of how broken and inefficient the government really is... I have to admit that much. People just don't think about this stuff until they're staring it in the face when they hit a crisis themselves. They need a wake-up call. A serious kick in the pants!
As for Alenka, unfortunately, it’s too little too late 😢, but we have to keep fighting for everyone else who's going to need these medications down the road.

Hmm, Nancy Hernandez43, I honestly think about 20% of the people I sent the petition link to actually went ahead and signed it... and frankly, I'm just disappointed.

Alenka, rest in peace😢
My deepest condolences go out to Alenka's family.

I was nearly moved to tears yesterday after reading that article in The Washington Post. It really seems like human lives mean absolutely nothing to our Secretary. 👎

Has anyone heard anything from Grace Fowler lately? She’s completely vanished from the forum.

shadowmason6 said:My heart goes out to Alenka's family and everyone who knew her personally.

The entire situation is infuriating, and frankly, I am livid at everyone involved—from the Secretary to the entire systemic failure...
Kudos to slyseal28, Angela Wright... and everyone else attempting to highlight these issues and keep the public informed. If I weren't active on this forum, I might actually be less aware of these deep-seated problems and state inefficiencies... I must admit that. People simply don't give enough thought to these matters until they find themselves facing a similar crisis. They need a wake-up call. A bit of a jolt, if you will!
As for Alenka, unfortunately, it is far too late 😢, but we must press on with this fight for the sake of others who will desperately need these medications in the future.

Well, Nancy Hernandez43, I suspect about 20% of the people I sent the petition link to actually went ahead and signed it... I am quite disillusioned myself.

I suppose it is easiest for people to simply say, "that won't happen to me" or "that can't possibly happen to me." I honestly cannot decide what weighs more heavily on my heart: the fact that those I once trusted failed to sign the petition, or the realization that these very same people don't even bother to ask, "how are you?" or "how is your mother doing?"

It is understandable that not everyone is required to grasp or empathize with my struggles or anyone else's, but still—where does all this callousness come from?!

If the time ever comes to respond to a public protest or a formal outcry, you can certainly count me in! I have no intention of finding myself alone again without solutions or medication, nor will I allow anyone close to me to suffer the same fate.

Let us remain brave and hold onto the hope that we will achieve far more than we currently are!

It is difficult not to look back at Alenka and reflect on her courage and her sheer will to live. Could things have gone differently? That is the question that will forever hang over the heads of everyone who knew Alenka. Those who might have been able to expedite the arrival of the medication did absolutely nothing. We wrote to the Secretary of Health, the Undersecretary for Health, the Assistant Secretary for Social Services, the health spokesperson, even the President... We sent pleas for help via email, fax, and certified mail. We turned to the media: American Television, Slobodan Dalmacija, USA Today, The Washington Post, RTL Television, Nova TV, and various online portals like sutra.hr, javno.hr, and lupiga.com... Some responded, and in doing so, helped Alenka's family raise the funds needed to purchase the drug. The call for help was answered by citizens across America and small private business owners who donated what they could. Emails circulated online, calling on people to step up.

However, because the medication was delayed by bureaucratic red tape, the disease progressed, and Alenka simply no longer had the strength to keep fighting. We didn't even get to see the follow-up CT scan that might have shown a reduction in the tumor. She reached a point where she could no longer eat or walk. I want to make one thing very clear: no doctor promised us that this new drug would provide a 100% cure. They said it had shown efficacy in treatment and could potentially extend Alenka's life. Therefore, if the drug had been administered in time—while she was still physically strong—it could have given Alenka a few more years.

We are bitter because none of the relevant institutions ever reached out. We are embittered because not one of them even had the decency to respond to our pleas. This is just one of many tragic human stories that truly could have ended differently if someone had simply done their job.

The Department of Health's stance toward new, unregistered medications is poor. Our healthcare system is structured in such a way that a person is expected to die before receiving a treatment that might not be 100% effective, but nonetheless offers a 20-30% chance for two, three, or six months. For some, those few months are more important than an entire lifetime.

In the medical world, science is advancing, and new targeted therapies are being developed that offer patients with malignant diseases a chance to prolong their lives. Yet, our healthcare system is set up so that patients cannot easily access these new drugs unless they liquidate every asset they own. I suspect that even the doctors who inform patients about these new options end up getting reprimanded by bureaucratic bosses. I am certain that one of these bureaucrats will eventually claim it was for the best that they didn't approve Yondelis, arguing that it wouldn't have helped anyway.

But to those very same bureaucrats, I say this: that drug could have helped Alenka, if only it had been administered in time.

It weighs heavily on me that we live in a society that isn't stubborn or brave enough to fight for those in desperate need. It really could have been different.

Let's wake up, people. Let's open our eyes. For all those who are no longer with us, and for all those who are still here.

My deepest condolences to Alenka's family and friends.

slyseal28 said:We're bitter because not a single official agency has reached out. We're bitter because none of them even bothered to respond to our pleas. This is just one more tragic human story that truly could have ended differently if someone had simply done their job.

It’s hard for me because we live in a society that isn't stubborn or brave enough to fight for those who actually need help. This really could have been different.

Wake up, people. Get real! For everyone we've lost, and for everyone who is still here with us.

At this point, nothing in the healthcare system can surprise me anymore, and that fact alone is devastating. It means that I, and so many others, have become so accustomed to the absolute catastrophe of our medical system that we expect nothing but frustration, fighting, misunderstandings, and being brushed off.

I've written extensively about everything my own family went through and my views on the medical staff, so I won't repeat myself, but this is simply horrific and needs to be changed from the ground up.
I only dropped the lawsuit against the department where my father was staying—and the hospital as a whole—because of my mother. I didn't want to exhaust her any further or force her to relive the trauma, so I wanted to protect her and make things easier for her. Given the state of the justice system, a lawsuit probably wouldn't have solved or changed anything anyway.

Reading stories like this leaves me feeling indescribably sad and angry...