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

The bronchoscopy results finally came back today. After sitting down with the doctor, there’s actually some light at the end of the tunnel: Mom’s cancer is highly responsive to chemotherapy, so she starts treatment tomorrow. She’ll be staying at the clinic until Thursday and should be heading home by Friday, at which point we can map out the next phase of her care. When the doctor and I shared the news, she teared up a bit, though he managed to lift her spirits by explaining that the prognosis is actually quite promising compared to that initial, terrifying assumption that there was no hope left. It’s been a heavy road for our family, though; my aunt passed away from a cancer that spread everywhere—brain, bones, the works—and Dad lost his battle with leukemia, so Mom isn't walking into this blind; she knows exactly what the fight looks like.

boldridge3 said:The bronchoscopy results came in today. After talking it over with the doctor, it turns out Mom has cancer, but luckily it’s the kind that responds really well to chemo, so she starts tomorrow. She'll be in treatment through Thursday and should be able to head home by Friday, then we'll figure out the next steps for her care. Both the doctor and I broke the news to her; she teared up a bit, but he actually cheered her up slightly by telling her the prognosis is good, especially compared to that first terrifying assumption that there was no hope left. The worst part is that my aunt passed away from a cancer that spread absolutely everywhere—brain and bones included—and my dad died from leukemia, so Mom knows exactly what this fight looks like.

I am so incredibly sorry about your mom!!! You might want to look into getting her some vitamin supplements; they aren't cheap here in the States, but they really help bolster the immune system. We used them ourselves, and they definitely helped take the edge off that crushing exhaustion you get from chemo...

Unfortunately, I’m joining this conversation too. 😢 My Uncle hadn't had a single issue for a month before his stomach suddenly started hurting—and then they hit him with the news. It's esophageal cancer that's already spread to part of his stomach, liver, and lymph nodes. The doctors basically wrote him off initially, but after getting a second opinion, they're taking a stomach biopsy today to see if there's any chance he can actually undergo chemotherapy. Surgery isn't even an option because the main aorta is involved. I honestly don't know what to tell you all... we're going through absolute hell right now. We're just crying and asking ourselves "why?" 😢 My Uncle has always been healthy—he doesn't drink, doesn't smoke, works hard, eats well, and sticks to fruit juices. He's 68. I can't focus on anything else; I don't even know how I manage to get up for work in the morning. We find out about the chemo options tomorrow, and I am praying that it's at least still on the table. Also, which vitamins were you talking about in your last post? He’s going to try royal jelly and even look into some alternative medicine like herbal teas, though deep down, I know it probably won't do much. 😢

Jamie Stewart said:I am so incredibly sorry about your mother!!! You might want to look into getting her some vitamin supplements; they aren't exactly cheap here in the States, but they really help bolster the immune system. We used them ourselves, and they made a noticeable difference in managing that crushing exhaustion during chemo...

I've been weighing my options regarding which vitamins would be most effective for her. My aunt works at a hospital in Switzerland, so she’s already putting together a customized regimen of dietary supplements based on what their doctors recommend there. The only catch is that she won't be back in the US until April 10th.

I am not posting for my own sake—my own checkups aren't until May. I’m writing this because of my mother, who passed away
on March 1st due to breast cancer that had already metastasized to her bones. She managed to hold on for three more years. May her soul rest in peace.
It is difficult to truly grasp how brutal death can be until you witness it firsthand. About a month and a half before she passed, she lost the ability to even use the restroom on her own. A home health nurse would come by, but eventually, she was moved to a facility in a nearby suburb. That is where she finally passed away after ten days.
I don't think I will ever forget those screams of agony. Any slight movement of her body, any shift at all, triggered such intense pain that she would just scream. Even with her pills and patches, nothing seemed to touch it.
At the facility, they likely kept her heavily sedated, because it felt like she wasn't even fully present anymore. She barely ate. Every single word she spoke was slow, as if she were gasping for breath just to finish a sentence. I used to buy baby food for her, but she could barely manage half a serving.
She had to drink through a straw.

The hospice center in that area is one of the only ones in the entire country providing palliative care, unless something has changed recently. Personally, I wouldn't want to end up there because I know exactly what it's like, but she refused every other option; she was adamant about going to that specific facility. There were eight patients in the room, and almost every day, a bed would open up and be filled immediately. Some of the patients just lay there, looking as though they had already passed away.
As for the medical staff... what can I even say? We visited her every single day. I would always ask her if she had eaten, and she would nod her head, claiming she had. But then, on the third day, I’d ask the same thing, she’d nod again, and the woman in the bed across from her would tell me straight up that she hadn't eaten a thing. It wasn't that she wasn't hungry; it was that she physically couldn't get the food to her mouth. She told me that one morning, she actually yelled at a nurse to feed her, simply because Mom couldn't do it herself.

Then, they raised the head of her bed. It was clearly uncomfortable for her because she had retreated to the very bottom of the mattress, lying flat and looking completely disheveled. I went to find a technician to lower the headboard so she could lie flat again. He handled it so roughly that the sudden movement sent her into another fit of screaming from the pain.
So, that is the reality of the "end-of-life" wards. We thought we might have had another month or two with her, but honestly, it was better that she left us when she did. When you see and experience all of this, you start to wonder why euthanasia isn't legally permitted. I am certain there are many people who would choose to leave this world on their own terms before they reach a state of total vegetative existence.
It is all just deeply tragic.

feralridge3... I am truly sorry about this...

My dear, please accept my deepest sympathies... I honestly don't have the strength left to say anything else.
Hang in there and take care of yourself. You're in my thoughts often.

Angela Wright said:My dear, please accept my deepest condolences... I honestly don't even have the strength left to comment further.
Hang in there and take care of yourself. You've been on my mind quite often.

Thank you all. Honestly, no comment is needed—there isn't much left to say anyway. Dealing with the funeral arrangements absolutely drained me, but things have settled down now that we're just waiting on the probate proceedings to wrap up.
As for me, I'll check back in once I get my MRI results. I'm sure they'll be fine. 👍
My appointment is scheduled for May 4th. It means so much that you thought of me.

Has anyone here actually used mistletoe injections? I’m looking for any info at all—anything really. I have to wait until Tuesday for my oncologist to get back in, and then I’ll have to try and talk him into writing a prescription. Once we have that, I’ll need to fax it over to a specialty pharmacy in Chicago so they can order it and ship it directly to my mom's house. In Germany, they call them mistletoe injections—I know you can't just pick them up off a shelf without a script, and they seem pretty pricey, though I don't have an exact price yet. One more thing—if my oncologist refuses to sign off on this, who else can I turn to? I wonder if a primary care doctor could handle it...?

So, what's everyone's take on cannabis oil?

Well, unfortunately, I’ve ended up on these forums too.
I need some help from the experienced people here regarding what we should do, specifically whether there is any point in taking my father abroad for treatment or if we’ve reached the end of the road.
My father is 74, and until just a year ago, he was incredibly vital and had absolutely no health issues, but then he unexpectedly discovered colon cancer, and after surgery, they found liver metastases that were simply impossible to operate on because the liver is riddled with them.
About a month after his surgery, he started chemo with Avastin plus cytostatics administered intravenously every 48 hours, and honestly, he handled it remarkably well without any nausea, even regaining the weight he lost and showing decent blood work.
He completed 18 rounds of chemo, but then everything just started spiraling downward because the treatment stopped working; his markers shot right back up to 1000 after they had actually dropped down to 70.
His liver started hurting, his CRP hit 170, and he ended up hospitalized on antibiotics, and while the pain has subsided slightly, his feet have started swelling, he isn't mobile like he used to be, and this cough is really punishing him.
Right now, his blood work is in no condition to continue with chemo, and Dr. Vrdoljak has changed his therapy, though looking back, he probably should have done that much sooner.
We would love to take him somewhere outside the country if there’s any hope left, but none of the doctors have ever even mentioned the possibility of seeking care elsewhere, so I noticed that Angela Wright seems to know her stuff about all of this and I’m reaching out for any help or advice you can give.
Thanks.

Betty Wood71 said:Unfortunately, here I am on your pages too.
I need help from the experienced people here regarding what to do—whether we should take my father somewhere out of state if there's any hope, or if this is just how it is.
My father (74 years old, he used to be incredibly vital with zero health issues) unexpectedly discovered and had surgery for colon cancer a year ago. It had liver metastases that couldn't be touched because they were so widespread.
A month after surgery, he started chemo with Avastin plus cytostatics via IV every 48 hours, and he actually handled it quite well without nausea; he even regained his lost weight and his blood work looked okay.
He finished 18 rounds of chemo, but then everything started spiraling downward. The chemo stopped working, and his markers shot back up to 1000 after being down to 70.
His liver started hurting, his CRP hit 170, and he ended up hospitalized on antibiotics. Since then, while the pain has lessened slightly, his feet have started swelling, he’s lost his mobility, and he’s struggling with a cough.
Right now, his blood work isn't in any condition to continue chemo, and Dr. Vrdoljak has changed his therapy, though perhaps he should have done that sooner.
We would take him somewhere else if there was any way to get help, but none of the doctors have ever mentioned such an option, so I see that Angela Wright understands this stuff pretty well and I wanted to ask for some help and advice.
Thanks.

It looks like fluid is building up in his abdomen because his liver is in bad shape.
Try sending his records somewhere for a second opinion, but since Dr. Vrdoljak is the one handling him, it's unlikely he'll backtrack. Right now, the priority is stabilizing him so he can actually tolerate a different line of treatment. Don't be discouraged; the starting position was already uphill due to those distant metastases, meaning it was an advanced stage from the jump. At this phase of the disease, treatment options are pretty limited everywhere, and they're more or less the same regardless of where you go.
Ask Dr. Vrdoljak if the K-Ras test for Erbitux has been done for him. If he has the wild-type tumor cells, then Erbitux is indicated. Erbitux is a smart choice, much like Avastin. I suspect he might still be able to move into a second or third line of treatment, though I can't say for sure.

You have to find a way to accept that at this stage, the goal shifts entirely to extending quality of life. Seek help with that mindset, because otherwise, you're just making things harder for him. I'm telling you this from experience. With the right targeted therapy, he can still get some good, quality time.

Angela Wright said:It’s obvious that fluid is building up in his abdomen because his liver is in bad shape.
You should try sending his test results somewhere else for a second opinion, but since we're dealing with Dr. Vrdoljak, I doubt he'll be making any amateur mistakes. He needs to stabilize first before he can even think about starting a different line of therapy. There's no use in being overly sentimental here; from the very beginning, the situation was already uphill because those distant metastases were already present, meaning it's an advanced stage. At this phase of the disease, treatment options are pretty limited and basically look the same no matter where you go.
Ask Dr. Vrdoljak if they've run the K-Ras test to see if he qualifies for Erbitux. If he has the wild-type tumor cells, then it's an option. Erbitux is a smart choice, just like Avastin. I think he might be able to move to a second or third line of treatment, though I'm not entirely certain anymore.

You honestly have to accept that at this stage of the illness, the focus has to be exclusively on extending quality of life, and you need to seek help with that mindset, otherwise you're just going to make things harder for him. I'm telling you this from experience. With the right targeted therapy, he can still get some good quality time.

Thanks for the quick reply,
Dr. Vrdoljak probably approved the Erbitux already, and he should be going in for a checkup tomorrow to find out more.
The K-Ras test was done, and they said it wasn't a match.
We know his legs are swollen because of the liver, but at least there isn't any ascites yet, which is a small mercy.
Right now, his biggest struggle is this cough that's choking him, even though the last CT scan from about twenty days ago showed his lungs were clear.
We're all losing our minds trying to find some new way forward, and we've reached a point of desperation where we actually sought out a woman from Split who was saved by Dr. Simoncini—she had breast cancer with metastases in her liver, brain, lungs, and bones—and I know you don't agree with that kind of thing.
Anyway, she came to see my dad, and right now we're trying her IV therapy because we felt like we had zero other options; Dr. Jadrijevic said surgery isn't an option, and he couldn't handle chemo because of his lab results.
But at least she gave Dad some hope so he can find the strength to keep fighting.

What would you guys suggest for boosting the immune system? My brother-in-law is about to start radiation, and they mentioned chemotherapy too, though we’re still in the dark about the specifics of what he'll be getting. With this massive sea of supplements and products out there, I have no idea where to start. Honestly, price isn't an issue right now.

Betty Wood71 said:Thanks for getting back to me so fast,
Dr. Vrdoljak probably approved the Erbitux now; he should be going in for a checkup tomorrow to find out more.
The K-Ras test was done, and they said it wasn't a match.
We know his legs are swollen because of his liver, but it's a good sign that there's no ascites yet.
Right now, his biggest issue is this cough that's choking him, even though his lungs looked clear on the last CT scan about 20 days ago.
We are honestly losing our minds trying to find some new way forward—we're desperate. We even tracked down a woman from Split who was saved by Dr. Simoncini (she had breast cancer that spread to her liver, brain, lungs, and bones), though I know you don't agree with that approach.
Anyway, she used to come see my dad for exams, and right now we're testing her IV therapy because we felt like we had no other options. Dr. Jadrijevic said surgery isn't an option, and he couldn't do chemo due to his lab results.
But at least it gave Dad some hope to keep fighting.

Then unfortunately, he isn't a candidate for Erbitux, and you'll have to move on to something else. That cough is likely happening because fluid is starting to build up in the pleura.
As for Simoncini, I’ve already said my piece, but I have to tell you: you've swallowed some stories whole from someone regarding things that neither you nor she likely understands. How can you claim to have an accurate insight into her condition, and how can you be sure she hadn't already undergone other conventional treatments?
How do you know that the cough Dad is having right now isn't a complication from voluntarily injecting something you don't actually understand—something where nobody is taking any responsibility for the outcome? How do you know it isn't sabotaging the effectiveness of the treatment Dr. Vrdoljak is providing, or worse, acting as a contraindication?
You've stepped into a very gray area without actually knowing anything about the enemy you've decided to pick a fight with using something undefined, just because someone told you it worked for them. You've dove into this out of a pure need to negate that feeling of helplessness and despair, which is completely understandable, but incredibly dangerous. The road to hell is paved with good intentions. Dealing with the conscience later on is a heavy burden. Believe me, I am struggling with it deeply today.
If you need hope, you can find it much more safely through proven complementary supplements that actually have legitimate, documented effects.

neoncyclist792 said:What would you recommend for boosting the immune system? My brother-in-law is about to start radiation, and they mentioned chemotherapy too, though we don't know the specifics yet. With this massive sea of supplements and products out there, what should we pick? Price isn't an issue.

Don't overdo it—stick to no more than three supplements, and make sure they actually complement one another.

Personally, I’d go with beta-glucan (like Imunobuster, which is incredibly potent), native propolis (great for fighting off infections, plus studies by Rudjer have shown it can even help repair damaged DNA), and high-quality probiotics (essential for maintaining immunity and restoring the gut flora needed for healthy digestion).

He should avoid taking them on the actual days of therapy; instead, take them during the gaps between cycles to help boost his immunity and aid recovery.

Of course, try to eat fresh, home-grown fruits and vegetables whenever possible—ideally organic. Focus heavily on berries and anything orange, like apricots, pumpkin, or carrots. Minimize refined foods and sugar as much as possible. You don't necessarily have to cut it out entirely, but having ice cream or a heavily sweetened coffee every single day does more harm than good.
If he can't manage to eat fish at least twice a week, he absolutely needs to take Omega-3 capsules.

Only buy supplements from reputable pharmacies or certified, trusted manufacturers. Honestly, the best approach is to lay out the options, trust his gut, and make a decision. Once he settles on a regimen, he needs to stick to it consistently as long as it feels right. Don't bounce around from one thing to another every few days.

Angela Wright said:So unfortunately, Erbitux isn't indicated for her anymore, so they’re moving on to something else. That cough is likely because fluid has started building up in the pleura.
I've already said everything there is to say regarding Simoncini, but I have to tell you all that you've taken some random person's stories about certain things far too easily when neither you nor she actually understands what's going on. How can you claim to have an accurate insight into her condition, and how can you possibly know she hasn't received some other form of conventional therapy?
How do you know that the cough Dad is having right now isn't a complication from some voluntary IV injection of something you don't even understand, and where are your guarantees, especially since nobody is taking responsibility for it? How can you be sure this isn't interfering with the effectiveness of the treatment Dr. Vrdoljak is providing, or even acting as a contraindication to it?
You've wandered into a massive gray area without actually knowing anything about the enemy you've decided to pick a fight with, simply because someone told you it worked for them. You've jumped into this out of a desperate need to negate that feeling of helplessness and despair, which is completely understandable, but it is incredibly dangerous. The road to hell is paved with good intentions, and dealing with the conscience later on is a heavy burden to carry. Believe me, I am struggling with it immensely today.
If you're looking for hope, you can find it much more affordably through verified complementary supplements that actually have a legitimate, proven effect.

Look, regarding Simoncini, we wouldn't be giving him anything unverified either.
We actually met with the woman from Split last year when everything first started with Dad; she told us that all the doctors had already written her off by the time she decided to go this route, and she showed us the PET scans from before and after, and we saw her again recently and she's doing well without chemo.
The cough has been happening since before this therapy started, and this treatment can't interfere with Dr. Vrdoljak's work because he hasn't been able to handle chemo for two months now. His condition started declining a while ago, whereas we only started this Simoncini therapy about ten days ago.
Since there really wasn't any other choice, Dad made the decision himself; he's a very realistic and sensible man, and he felt there was no other option but to try something experimental.
Believe me, Angela, we have tried everything and given it our absolute all, and Mom spends all day making immune-boosting preparations because she has all her own homegrown fruits and vegetables.
For about nine or ten months, Dad had an excellent quality of life and great blood work, but his condition started dropping during the last two or three rounds of chemo, so this is truly the only thing we have left.

Greetings to the forum members.

I am checking in after a three-year absence. I am 58 years old and currently based in Sarajevo.

A brief recap: Three and a half years ago, I was diagnosed with cancer, back when VedranST was still part of this community. The results from five different histopathology analyses of my lymph nodes and skin have consistently yielded nothing but "adenocarcinoma of unknown primary epithelial origin." Based on those findings, I underwent chemotherapy regimens including cisplatin plus irinotecan and carboplatin plus taxol, neither of which produced any results. I have endured roughly ten CT scans, MRIs, three PET/CTs, scintigraphy, and countless ultrasounds and blood tests. In my desperation, I even went for HIV testing—thank God it was negative. Every single scan and report indicates that no organ, from my head down to my pelvis, shows signs of involvement.

The most recent reports suggest the cancer persists through metastases in the lymph nodes of my left groin, small pelvis, and left side of my neck, as well as in my bones (spine, Rib, and skull) and on the skin of my hands, neck, and head.

To manage the pain, I underwent five radiation sessions on my spine, which did provide some relief.

Tomorrow, I am scheduled to have another "appearance" on my skin removed, in hopes that another HP analysis might finally provide an answer regarding the cancer's origin.

Given that waiting for these results here takes over a month—and they will likely return the same inconclusive result (adenocarcinoma of unknown primary)—I am asking for assistance: Is there a high-quality, reliable, and trustworthy laboratory in the US where I could potentially send samples to be processed? My oncologists are forced to rely on these specific findings because no other diagnostic tool has provided answers; they determine the entire course of treatment based solely on the HP results.

Thank you for your responses. Regards from Sarajevo.

Lawrence Ortiz6 said:What’s everyone's take on cannabis oil?

I'm asking again—if anyone actually has a real, reasoned answer, let me hear it.

Furthermore, the specific type of adenocarcinoma remains unknown. We didn't sit around twiddling our thumbs waiting for chemo or radiation to kick in; we jumped straight into the fray with every tool at our disposal—private oncologists, herbal teas, fresh juices, cannabis, MMS, acupuncture, Biobran, flaxseed and cheese, apricot kernels, raw propolis, and absolute, uncompromising dietary control. We left no stone unturned. Even the PET CT scan didn't reveal anything beyond what we had already gathered. There were seven metastases in the brain; through ten rounds of radiation, five have vanished entirely, while two have shrunk. The metastasis in the chest hasn't budged, nor has it grown, and the situation with the kidneys remains strictly status quo. It has been four months since the initial diagnosis.
My dad is actually feeling quite well, though he’s struggling with blood sugar spikes due to the dexamethasone. I truly believe that everything we’ve implemented is making a difference; without these interventions, he would likely be fading fast by now.
What has really set us back, however, is the sheer dysfunction of this healthcare system. After waiting a month just to get his chemotherapy started, they suddenly informed him he had to see a cardiologist first—purely due to lack of coordination—and now we’re facing yet another two-week delay. To make matters worse, he’s noticed some mucus in his stool, and we're terrified it might mean the cancer is spreading. Naturally, we’ll try to get answers privately to bypass the wait.

I am quite intrigued by this whole Simoncini situation; I intend to do some digging online to understand the specifics, but I would certainly appreciate a link or a contact number/email if you have one.

Kevin Bishop10, regarding laboratories, you should look into Breyer; that’s where we handle all of our testing.

Lawrence Ortiz6—I can't tell you definitively whether the cannabis is working or not, but I can certainly send you the details on where to source it.