Support resources for families dealing with cancer and other serious illnesses

Ewing's
My dad finished his first round of chemo from the 16th through the 18th, involving Etoposide, Holoxan, Doxorubicin, and Uromitexan. He actually handled it surprisingly well. For the first two days, he felt totally fine and was able to eat normally. By the third day, though, he could only manage breakfast. There wasn't any actual vomiting, just some mild nausea. Since that third day, he’s slowly starting to eat again, but we have to be incredibly careful about what he consumes because his stomach is being quite sensitive.
His next scheduled chemo session should be on October 9th.
However, I met with our unnamed doctor today, and he explained that what they are doing is just the standard protocol available here in the US. He actually suggested looking into hyperthermia therapy, which could make the tumor more unstable and allow biological chemotherapy and immunotherapy to work much more effectively.
Since we have relatives living in Chicago, he suggested we look into options in Philadelphia or New York City.
We’ll get more specific details once he calls us to come in and pick up a customized meal plan, certain immune support supplements, and the proposed treatment plan.
The CT scan noted that he needs a Color Doppler due to concerns about potential thrombosis, but since the hospital didn't perform it, the doctor said it's an absolute emergency. He also needs his prothrombin time, activated partial thromboplastin time, clotting time, and D-dimer levels checked.
He's really worried about possible micrometastases, so getting those tests done is our top priority right now.
He’s honestly baffled that they recommended scintigraphy, which isn't even reliable, instead of a PET/CT scan.
But of course, why would they want us to spend the money? It's not like Dad is in any rush, as if they haven't already completely screwed him over at the local clinic—I still can't believe they didn't suspect a tumor sooner when he was lying awake every single night in agony, yet they treated him so incorrectly in the beginning.
Our local experts... sometimes I just want to scream!
So, what do we do now?
My sister stayed behind in New York City because the doctor said they’d write everything down as soon as possible so we can come by and finalize the arrangements.

Melissa Stewart said:Ewing's
The unnamed patient received his first round of chemo from the 16th to the 18th; Etoposide, Holoxan, Doxorubicin, and Uromitexan. He actually handled it fairly well. For the first two days, he felt fine and was even eating. By the third day, he only managed breakfast. No vomiting, just some mild nausea. After that third day, he started eating slowly again, though he has to be extremely careful with his diet because his stomach is giving him trouble.
His next session is scheduled for October 9th.
However, I saw our unnamed doctor today, and he mentioned that this is just the standard treatment available here in the States. He suggested hyperthermia therapy—using high temperatures to make the tumor more unstable—which could then be paired with biological chemotherapy and immunotherapy.
Since we have relatives in Chicago, he suggested looking into options in Philadelphia or New York City.
We’ll know more once we call to arrange the specific meal plan, the "supplements" for immune support, and the planned therapy protocol.
The CT scan noted that a Color Doppler should be performed due to potential thrombosis, but they didn't do it at the hospital, so he said it needs to be done urgently. They also need prothrombin time, activated partial thromboplastin time, clotting time, and D-dimer tests.
He's worried about possible micrometastases, so we need to get those results immediately.
He's baffled as to why they suggested scintigraphy, which isn't even reliable, instead of a PET/CT.
But of course, why bother spending the money when he has plenty of time? It’s as if they didn't care how much they were screwing him over in the first place (I honestly can't believe they didn't suspect a tumor earlier, given he couldn't sleep at night from the pain, yet they treated him completely incorrectly).
Our local experts... I feel like killing them!
So, what now?
My sister stayed behind in New York City because he told her they want everything written down as soon as possible so we can come in and finalize the details.

Dear, as far as I know, there is no scientific evidence that sarcomas can be successfully treated with homeopathy. If such evidence does exist—please, for heaven's sake, send it our way.

Sarcomas are rare tumors that are best handled surgically. However, because they lack specific markers, they are very often diagnosed late, which usually means they are already quite large. When my husband was diagnosed, his was 20 cm and located in the mediastinum. Some sarcomas are, thank God, chemosensitive and can be managed with chemotherapy, while others respond to radiation.

Some sarcomas are so incredibly stubborn that they don't respond to anything... We are still waiting for the right targeted drugs that can truly block their growth. From all over the world, we hear that clinical trials for these new anti-tumor drugs are underway. Some are currently in phase 2 or 3 trials.

Specifically regarding Ewing's sarcomas, our professor here is seeing very promising results, so please don't lose hope. Try to follow the oncologist's advice. The side effects of chemotherapy are what they are... You just have to find a way to deal with them.

For blood counts, Neurobion forte capsules (Vitamin B) are excellent; they cost about $43 and you don't need a prescription.
If he is suffering from intense pain—you MUST request pain management. Pain CAN be managed. My husband went through horrific pain. He literally couldn't stay in bed for a month. He couldn't even stretch out. On top of that, he was as stubborn as a mule and wouldn't even consider Tramal or similar medications...

Now he's taking Tramal, 100mg three times a day (I think), and the pain has vanished.

Ultimately, you have to make the decision and try to act according to your conscience. What matters most is that you believe in what you're doing.

Maria Jones40 said:Why aren't doctors speaking up? It’s pretty simple, really. They go home and feed their kids just like everyone else. They're scared of the system they work in, they hate being blamed for everything, and they don't get the support from patients that you claim they should (which is basically the opposite of what you're saying here). Plus, they're under massive public pressure, and in our system, things are basically run by political cronies. Eventually, they just burn out and become apathetic. They just wait until they get home to feel like actual human beings again.

Doctors are apathetic! And why? Look, they picked this career path themselves. They pull in great salaries, they have high social status, they walk around like they're gods, and everyone bows down to them. Whether they're at the clinic or out on the town, they always act like they're above it all. And why would they fear "the system" when they're the ones calling the shots? Honestly, shouldn't it be the patients giving *them* the support so they aren't too terrified to do their jobs and make enough money to feed their families?

Where's the part about who actually pays those doctors' salaries? Who’s out there providing real support to the sick people suffering through this? Every single patient has a family behind them, desperately begging for help. Some people get lucky, some don't, and some... well, they just get left behind.

Maria Jones40 said:It’s honestly pathetic, though I have no clue who fed those poor souls the idea that everyone needs to pay up based on nothing but rumors and tall tales that rarely hold water. You can't just judge an entire system because of a few bad actors.

"Rarely hold water" my ass????????????????😕
If doctors actually had the backbone to refuse gifts and kickbacks, those bottom-feeders would’ve dropped that "habit" of theirs a long time ago.

Lisa White54 said:Doctors are just indifferent! Why? They picked this career themselves. They pull in great salaries, enjoy high social status, walk around like they own the place, and everyone bows down to them. Whether they're on the clock or off, they always act like they're untouchable. And why would they fear the system when they’re the ones defining it? Patients should be the ones providing help and support so doctors aren't afraid to do their jobs and can comfortably provide for their families.

Where is the part of this argument about the people who actually earn those doctors' paychecks? Who is offering support and assistance to the unfortunate patients? Every single patient has a family desperately pleading for help. Some get lucky, some don't, and some...

I wouldn't completely agree with you. I have doctors in my own family, so I know exactly what they deal with and the kind of pressure they face.
In my view, the real issue isn't just money; it's that they lack cohesion. There's too much inertia and way too much ego involved, which kills any hope for teamwork—something that is absolutely vital for successful medical practice. That lack of cooperation directly compromises the quality of care. Not every single problem here is financial.
The issues mentioned are typical of the general state of American society, but we feel it most acutely through the medical profession because we've been dealing with them so much lately.

Angela Wright said:I wouldn't say I totally agree with you there. I’ve got doctors in my family, so I see firsthand what they deal with and everything they have to put up with.
The real issue, if you ask me, is how much they refuse to cooperate. They can be super stubborn, pretty passive, and honestly, there's way too much ego involved. That lack of teamwork is a huge deal—you need it to actually succeed in medicine—and when it's missing, the quality of care takes a massive hit. Not every problem here is about money.
Basically, everything mentioned is just typical for American society, but we really feel it through the doctors since we've been dealing with them so much lately.

I wasn't even talking about all doctors. There are some truly wonderful people out there. But I'm talking about the ones who act like they're untouchable. Unfortunately, based on my experience, there are plenty of those at our local community hospital.
It's different at specialized clinics (like the unnamed or MD Anderson Cancer Center). The doctors there are more down-to-earth and approachable. There are amazing doctors out there. And thank God for them.

...I honestly feel like we might have gone a bit overboard with this topic, which really deserves its own dedicated thread... I think Lees understood what we were trying to get across, but if she didn't, then she probably won't, right? Let's just focus on supporting one another instead, just like we've always done...
Go ahead, ladies... go for it!👍

rustyscout31 said:...I think we’re all getting a bit too worked up over this topic, which honestly deserves its own dedicated thread... I feel like Lees finally caught our drift, but if she didn't—well, she won't. Let's just get back to looking out for one another like we always have...
Ivanice...go for it!👍

Preach.

Quick question for the group: does anyone actually know the details on that Johanna Budwig recipe? You know, the fresh cottage cheese mixed with flaxseed oil? Like, what specific brand of cheese and which exact oil are we talking about here, and where can I actually find them in a local grocery store?
Also, has anyone dealt with that energy drink company Marijan Kero out of Bibinje?
Thanks!

slyseal28 said:Honey, from everything I know, there just isn't any scientific evidence that homeopathy can successfully treat sarcomas. If such studies actually exist—please, I beg you, share that information with us.

Sarcomas are rare tumors, and surgery is usually the best way to handle them. However, because they don't have specific markers, they are very often diagnosed quite late, which means by the time you find out, they are typically huge. When my husband was first diagnosed, his tumor was 20 cm and located in the mediastinum. Thankfully, some sarcomas are chemo-sensitive and respond well to chemotherapy, while others can be treated with radiation.

Some sarcomas are just so incredibly stubborn that they don't react to anything... We still don't have those perfect targeted drugs that can truly block their growth. But we're constantly hearing news from all over the world about clinical trials for these new anti-tumor medications. Some are already in Phase 2 or Phase 3 testing.

Specifically regarding Ewing sarcoma, our specialist here has been seeing really wonderful results, so please don't lose hope. Try to follow the oncologist's advice. The side effects of chemo are what they are... You just have to find a way to manage them.

For blood counts, Neurobion forte capsules (Vitamin B) are great; they cost about $43 and you don't need a prescription.
If Dad is suffering from intense pain—PLEASE ask for therapy. Pain CAN be managed. My husband went through such horrific pain; he literally couldn't sleep in bed for an entire month. He couldn't even stretch out. On top of that, he was as stubborn as a mule and wouldn't even consider taking Tramal or similar medications...

Now he's taking Tramal, 100mg three times a day (I think), and the pain has finally subsided.

Ultimately, you have to make the decision, and I truly hope you act according to your conscience. The most important thing is that you believe in whatever path you take.

Dad was taking 100 mg Tramal and Zaldar. Now, instead of the Tramal, he’s using Lumidol drops. They seem to be working better for him, maybe just because he's been on the Tramal for longer now.
He's also taking 500mg of beta 1,3 D glucan (one capsule), though Dr. Soltysik suggested he should actually be taking two.
He's also taking native propolis, ABC plus, Hawthorn drops, and Lepicol (probiotics and prebiotics to help with gut health). For circulation, he takes Ginkgo Forte, which works better for him than Aspirin Protect.
I didn't realize our specialist had experience with Ewing sarcoma. He's very positive and tells Dad that everything will be okay and that the medication is actually shrinking the tumor.
The tumor affects Dad's pelvic bone, specifically the iliacus and gluteal muscles. As for whether any of the vertebrae that the pelvic bone rests on are involved, it's hard to say because even the specialist mentioned that scintigraphy can be unreliable. Should we ask him for a PET/CT scan, since I know it costs about 10 $0.00?
It actually caught me off guard when Dr. Soltysik said he should eat as few carbohydrates as possible, because I always assumed the tumor fed on proteins rather than sugars.
We'll see once they call us in for a consultation and further instructions.
Thanks for all the advice.

I'm rushing this because my ear is absolutely killing me, so I think I might have miscalculated something. The pain is hitting my hip bone, the iliacus muscle, and my gluteal muscles too.

rustyscout31 said:...I think we're all getting a little too worked up over this topic, which honestly deserves its own dedicated thread... I feel like Forest got what we were trying to say, and if she didn't—well, she won't. Let's just get back to helping each other out, like we've always done...
Angela Wright... go for it!👍

I'm with you. Let's just keep looking out for one another.

Melissa Stewart said:I'm rushing because my ear is killing me, so I messed up. It's hitting the hip bone, the iliacus muscle, and the gluteal muscles.

Anita, I’m sending you all the strength in the world.

Lisa White54 said:Anita, I am sending you all the strength in the world right now.

Thank you, Lisa, we are certainly going to need it. I just want to touch on what you said about everyone at the MD Anderson Cancer Center being so wonderful. We actually arrived there around 1:00 PM, and instead of meeting with the chief specialist—I can't even remember his name anymore—we were seen by this incredibly grim doctor who basically told us there was nothing to be done because it’s a 16 cm tumor, and perhaps some radiation could help manage the pain.
That was her final word on the matter, and at that point, we didn't even have a confirmed diagnosis from Salat yet.
She reached that conclusion based solely on old records from our insurance provider, since we hadn't even performed a recent CT scan or scintigraphy; we were just acting out of pure desperation, searching for any kind of help because our own local specialists couldn't even put two coherent sentences together regarding Ewing.
Dad has her "paperwork" somewhere, though I honestly don't remember her name and frankly, I don't care to find out.
I just can't wrap my head around how she could send us home with the implication that "this is it, there isn't even a fight left to pick." It was so devastating that Dad genuinely feared he wouldn't even make it back home!

Also, does anyone know how to get in touch with the healer Marijan Kera from Bibinje? He was featured on that one investigative news program.

Susan Morales66 said:I agree.

So, I have a quick question. Does anyone know more about the Johanna Budwig recipe? It’s the fresh goat cheese mixed with flaxseed oil... What specific type of cheese and which oil should I look for, and where can I find them?
Also, has anyone here ever worked with the energy healer Marijan Kero from Bibinje?
Thanks!

Just grab any kind of fresh goat cheese—use two tablespoons—and one tablespoon of flaxseed oil (you can find that at any local health food store). You can even mix in some ground flaxseeds, which you can also pick up at a health food shop. Just mix it all together and enjoy!🙂

Lisa White54, please share some specifics regarding what exactly is going on with your husband. It seems like my husband's cancer is very similar to his, so naturally, I'm interested in every detail. On September 22nd, you mentioned he was back home after being discharged from the hospital and that you needed to call about the biopsy results. Well, yesterday he already underwent a new bronchoscopy. Where did this take place? And why? Is it actually an enlarged lymph node, or are we looking at a new tumor? Thank you!

This might actually be a step in the right direction regarding how patients and doctors communicate, though it probably doesn't belong in this specific thread—maybe we should start a new one:

»American Medical Association« for healthcare worker rights
WASHINGTON, D.C. - A new Association dedicated to promoting the rights of healthcare professionals, known as "Prav-zdrav," has been established. Their mission focuses on advocating for nurses, radiology technicians, pharmacists, and physicians. The group intends to shine a light on the daily communication breakdowns between patients and their families, as well as the frequent disregard for the basic human dignity and professional expertise that staff face every day. In their official statement, they made it clear they aren't looking to challenge patient rights; rather, they want to point out that the healthcare provider isn't always the one at fault when things go wrong. They are planning to launch a website to document these issues and will be hiring a law firm to help resolve them. Dr. Damir Gugić, the Association's president, noted in a press release that they aim to use the media to discuss the state of the American healthcare system, highlighting that medical professionals continue to provide far more care than the limited material and human resources allow. [B. L.]

Susan Ruiz76 said:Ružica, please give me some specifics on what’s actually going on with your husband. It feels like mine and yours are dealing with almost identical cancers, so obviously I'm hyper-focused on everything. On September 22nd, you mentioned he was home, discharged from the hospital, and waiting on biopsy results. Well, yesterday he already had another bronchoscopy. Where? Why? Is it an enlarged lymph node or a brand new tumor? Thanks!

I am seriously hitting my breaking point right now.
My husband was let go from the hospital this past Friday for the weekend, with the plan that I'd call the doctor Monday to see if he should head back in or stay put, depending on those bronchoscopy results. When I finally got through to the doctor, he told me my husband *has* to go back to the hospital because they need to run a rigid bronchoscopy under general anesthesia. Apparently, the fiberoptic results were fine, the pleural effusion looked okay—nothing was found. So I asked, "Then what about that new tumor?" And the doctor just goes, "Oh, that might just be a lymph node, it's probably nothing." But he still insists on the rigid bronchoscopy to figure out the next steps. I called again yesterday, and he said the results aren't even ready yet and that he didn't see anything unusual. Meanwhile, my husband's condition has suddenly taken a massive dive. He's in agonizing pain, he started coughing up blood (which I'm assuming is from the procedure), and this morning he told me his head feels swollen. Now he wants to come home for the weekend, and I honestly have no clue what to do. I'm lost. If the tests are supposedly "fine," why is he getting so much worse? I find it hard to believe the pain is just from the anesthesia, since it was light sedation and the whole thing was over quick.
Now I'm just trying to get a hold of the doctor, but he's totally ghosting my calls. I don't even know what questions to ask anymore. I feel so stupid and completely helpless. I have no idea what's happening. I'm just spinning my wheels here. If someone could just tell me something, anything...

Melissa Stewart said:Thanks, Lisa White54, we’re gonna need it. Just gotta touch on what you said about everyone at the MD Anderson Cancer Center being great. We rolled in there around 1 PM and didn't even see a chief resident or anything—just some random doctor who looked totally clueless. She basically told us there was nothing they could do because it's a 16 cm tumor. Maybe just radiation to dull the pain, she said.
That was her take, and back then, we didn't even have a 100% confirmed PhD diagnosis from Salat yet.
She made up her mind based on some old records from the hospital since we didn't have a fresh CT or scintigraphy ready. We were honestly just panicking and looking for help because our own local specialists couldn't even string two sentences together regarding Ewing.
Dad has her "paperwork" somewhere, but I don't know her name and frankly, I don't care.
But seriously, how could she just send us home thinking, "That's it, we can't even fight this"? Dad actually thought he wouldn't make it back alive!

Does anyone know how to get in touch with that healer, Marijan Kera, from Bibinje? He was on that one investigative show.

I feel for you, but honestly, when I was at the MD Anderson Cancer Center, I think I just got lucky and ran into a really solid doctor. It was for my son, and the doc was genuinely amazing.
Hang in there, Anita.

Check this out...
I was reading in a news report that juice versions of these might be hitting our local pharmacies soon.

http://news.ufl.edu/2006/01/12/berries/

Friends, we wanted to send out a quick reminder about the upcoming Terry Fox Run 2008. It’s happening on September 28th, 2008, at the Jarun waterfront in Washington, D.C. We’ll start gathering around 2:00 PM, with the actual race kicking off at 4:00 PM. This year’s charity effort is being put together by MPG LLC, the Embassy of Canada, the American Cancer Society, Chicago Holding, and the Esplanada Hotel. They are working hand-in-hand with our own "For a New Day" Association—made up of patients, families, and friends—to invite local businesses and citizens to get involved. Whether you want to run, walk, bike, skate, make a donation beforehand, or even volunteer on the day itself, every bit of support counts. To keep spirits high, the wonderful humanitarian Sonja Šarunić will be hosting the festivities.

The afternoon kicks off at 2:00 PM with a big concert featuring Luka Nižetić. Right at the start, attendees will have the chance to win some great prizes through trivia questions—including two bicycles that you can actually use to jump straight into the race.

The official opening ceremony is set for 3:30 PM, featuring opening remarks from our organizers and sponsors, followed by the start of the race at 4:00 PM sharp. After a few surprises during the first half of the event, once the runners, cyclists, and skaters have headed out, we’ll have plenty of music to keep the crowd energized. You can look forward to performances by Branko Bogunović - PIF, the B2 Blues Band, the funky rock outfit Pokus, and the pop group En Faca coming all the way from Rijeka.

Once the race wraps up, the fun continues with a raffle where you can win a cell phone, various gear, and other prizes. The charity stalls and the En Faca concert will stay active until about 6:30 PM.

You can find more details regarding the full schedule here.

So please, do come along!