Support resources for families dealing with cancer and other serious illnesses

slyseal28 said:Check the news.

This isn't merely a fight for those suffering from soft tissue sarcomas anymore... It is a battle on behalf of everyone battling rare and debilitating illnesses. We must stand together and offer our support...

I truly fail to see how any Secretary of Health could be considered fit for such an office after making a statement like that...

Regarding overseas treatment and funding, I can only point to my mother's experience. She received care in Italy. Even though her husband is not an Italian citizen, her medical expenses were covered in full. When undergoing chemotherapy there, the medications aren't billed separately; they are simply included in the daily hospital stay fee. Many people gave us advice suggesting we should buy the medication back here in the States because it was cheaper, but it turns out we weren't actually paying for it at all over there...

The cost for a stay for an Italian citizen is $50, whereas for foreigners it is $500, yet the medication is administered precisely at the scheduled time, without delays or waiting lists...

The struggle continues... because this system absolutely must change. It is not enough that drugs are prohibitively expensive and inaccessible, but now they claim patients simply lack the funds themselves... how utterly tragic...😢

slyseal28 said:Dandelion_seed reached out to me—thanks so much, dear! And please, tell them exactly how things really are!!!

Since I underwent surgery for melanoma back in January, I’d love to swap stories and experiences with others navigating a melanoma diagnosis.

Honestly, thinking about that minister makes me want to gag🤮
Don't let someone like that get you down... 🙂!
All of us here are way above that kind of nonsense.

Linda Campbell thanks... I'm feeling a little shaky right now, but I know things will work out how they have to... What used to help your mom when she was dealing with nausea? I've been reading about some homeopathic remedies (those tiny pellets) on here... where can I actually find those?

shadowmason6 said:The mere mention of that Secretary makes me feel physically ill. 🤮
Don't let statements from someone like that discourage you. 🙂!
You are all operating on a level far beyond this.

Linda Campbell Thank you... I’m feeling a bit of anxiety creeping in right now, but I suppose I just have to accept whatever comes my way. What exactly helped your mother when she was dealing with nausea? I’ve been reading about certain homeopathic remedies—those little pellets—on here. Where can one actually go to pick those up?

My mother always leaned toward the basics—fresh sprouts, popcorn, grapes. I’ve also heard quite a bit about those homeopathic options; a friend of mine whose father battled stomach cancer tried them, and they were incredibly effective. While listening to NPR, I heard about an impressive product that I actually ended up using myself for CIN 1: R. Regulat from Natura Viti. They interviewed a man who used it during chemotherapy, and he claimed it completely eliminated his side effects. You should look up the number for Natura Viti, give them a call, and do your own research; apparently, the results regarding chemo tolerance are outstanding. It is entirely plant-based—soy, peas, chestnuts, various fruits and vegetables—but all fermented. Personally, my immune system was in a terrible state; I was dealing with CIN 1, E. coli, small wounds, bleeding, and all sorts of issues. However, after just one bottle and some Centrum vitamins, my Pap smear came back clear. Give it a try. Wishing you the best of luck, Melissa Kim45—hang in there.

To be honest, looking at our Secretary of Health, the bureaucracy... it’s enough to make you sick.

I’m hoping to get some advice here.
My mom just finished her first round of chemo at Mayo Clinic (following the Mayo protocol) after surgery for colon cancer. So far, thank God, she hasn't had many side effects from the treatment itself...

On Wednesday, they called her from Radiology. They told her to come back on Friday with a referral from her primary care physician for radiation and a CT verification. Mom is certain that's what they said—she even wrote it down immediately so she wouldn't forget...

I couldn't go with her yesterday; my mother-in-law went instead, and frankly, the whole experience sounded bizarre. They could barely find the department; apparently, it's tucked away in some basement with endless hallways, and even the nurses didn't seem to know exactly where they were supposed to go. Once they finally found the right spot, they were told that the referral for the CT verification was wrong—that a primary doctor can't issue it, it has to come from the surgeon who performed the operation. Mom insisted that's exactly what the nurse told her over the phone, which left everyone confused. In any case, they marked the area for radiation and sent her home. When I saw her later, she looked completely defeated. She’s in a bit of a fog because they told her not to wash off the markings, but radiation doesn't start until July 7th—so how is she supposed to stay clean until then?!

Also, what exactly is this "CT verification," and who is responsible for ordering it?

Thanks🙏

darkmaker70 said:To be honest, when it comes to the Secretary of Health, our medical system, and all this bureaucracy... I can barely keep my composure without feeling a sense of utter disgust.

I was hoping to ask you all for some advice.
My mother finished her first round of chemo at Mayo Clinic yesterday (using the Mayo protocol), following surgery for colon cancer. So far, thank God, she hasn't had many side effects from the chemo itself...

On Wednesday, they called her from radiology and told her to come in on Friday with a referral from her primary care physician for radiation and a CT verification. My mom is certain that’s what they said—she even wrote it down immediately so she wouldn't forget...

Unfortunately, I couldn't go with her yesterday; my mother-in-law went instead, and frankly, the whole experience sounds bizarre. They could barely find the place; apparently, it's tucked away in some basement filled with endless hallways, and even the nurses couldn't give them clear directions on where to go.... Once they finally tracked it down, they were told that the referral for the CT verification was invalid—that a primary care doctor can't issue it, only the surgeon who performed the operation! My mother insisted that's exactly what the nurse told her over the phone, which just left them bewildered.... Anyway, they marked the area for radiation on her skin and sent her home. When I saw her later, she looked completely demoralized. She’s in a total funk because they told her not to wash off the markings, but since radiation doesn't start until July 7th, she's worried about how she'll manage to stay clean....!?

Also, what exactly is this "CT verification," and who is supposed to send the referral for it?

Thank you🙏

The CT verification happens down in the basement at Mayo, specifically in the simulator area. If I recall correctly, you follow the hallway toward the cafeteria, and right before you hit the kitchen, you take a left. You'll see "Simulator" posted in the hall.

Furthermore, to pinpoint the exact area for radiation, they need to perform a high-quality, precise CT scan. They call it a CT verifier. Essentially, it’s crucial that the radiation hits exactly the right spot. That marked area on the skin needs to be preserved. Seriously, you cannot wipe it off. If the marks do happen to fade, you have to contact the doctor who made them.

As for the referral—the person who claimed only a surgeon can provide that is, to put it mildly, an idiot.

Regarding the washing situation: I know it sounds terrible, but she shouldn't wash that area the way most people normally would. What I mean is, the marked area must be protected; you can't scrub it or rub it with a towel. Just a gentle rinse is fine. If the lines get a little faint, just grab a marker and lightly touch them up. That's how we handled it.

We've been through this, and it isn't quite as scary as it seems... How much radiation did your mother receive? I didn't ask—which specific part of the body is being treated?

Thanks so much for the reply... does this mean she actually went through with the CT verification without even realizing they marked her up? (She seemed pretty confused yesterday, and since her mother-in-law didn't go inside with her, we aren't even certain...) or is it something else entirely?

They marked her backside, two squares on the side and one right in the center... it’s honestly hard to even wipe that area without noticing, it's so awkward... and they didn't tell her how many sessions she'll need to go in for.

darkmaker70 said:Thanks so much for the reply... does that mean she actually went through with the CT verification without even realizing they were marking her up? (She seemed so confused yesterday, and since her mother-in-law didn't go inside with her, we aren't even 100% sure...), or is it something else entirely?

They marked her buttocks, two squares on the side, right in the center... it's hard enough just trying not to wipe that area, it's incredibly awkward... and they haven't told her how many sessions she'll need to attend.

They would have had to perform a CT verification if they were doing the markings for the first time now.

If the marks get wiped away, just reach out to the staff downstairs and they'll redo them. It happens to people all the time—they forget. My wanderingharbor61 used to go in for radiation when it was sweltering outside. He’d end up sweating, and the marks would just smudge off. In those situations, we just contacted the doctor coordinating the treatments to arrange for a re-marking. Try to accompany her when it happens, just so she feels supported. And please, don't hesitate to ask the doctors anything; there's no reason to be afraid. Even if they seem a bit cold or clinical, don't let that stop you from seeking answers.

You can read a bit more about radiation therapy here

Me again regarding the CT verification... I don't get why she still has the referral, or what the deal is with this "investigation" nonsense and bringing up surgeons in the first place... If only I could have been there with her.😢thanks slyseal28 once again!

Joshua King77 said:Since I had melanoma surgery myself back in January, I’d love to swap stories with others dealing with melanoma.

God, Joshua King77,
you’ve probably already seen this mentioned on these forums, but my mom is fighting melanoma too.
She just went through surgery last week, and now she’s gearing up for therapy.

I was wondering—are you on any specific treatments right now? And what about supplements to help boost the immune system?

Hang in there, sending good vibes!

Hey Merien, how's your mom doing?
Any word yet on what her treatment plan looks like? I was driving through Makarska yesterday and you popped into my head.🙂
I actually ended up chatting about your mom's situation with my cousin, who's a GP. I didn't push any specific ideas on her, but she picked up on the exact same thing I did: it's highly likely that the primary tumor was basically just that "pimple" that got pushed out, meaning it's effectively gone. Her take is that they'll probably just stick to radiation for now, and if follow-up tests—God forbid—show any malignant cells are still hanging around, they'll likely move to chemo.

Nancy Hernandez43 said:You’re being so realistic about all of this, and honestly, incredibly brave. Necessity has a way of forcing your hand, and like you said, maybe you can even find a reason to be grateful for that push. You’re putting so much strength into this whole ordeal, and I really admire how you aren't backing down. Every time you post, it hits home for me; it makes me look back at my own situation—which isn't even half as heavy as yours—and I just think about what you wrote at the end of your last message: things are tough, but we can only choose to be braver and happier because we're all going through this together, and for now, we're doing okay..

Hang in there! kisses

Linda Campbell said:My mom used to take fresh sprouts, popcorn, and grapes. I’ve also heard about those homeopathic products; a girl I know whose dad had stomach cancer tried them, and they were a huge help. I actually heard about an excellent product on NPR (I used it myself for CIN 1) called R. Regulat from Natura Viti. There was a man on the program who used it during chemo, and he mentioned it helped mitigate all the side effects. Look up the number for NATURA VITI, give them a call, and just ask; apparently, the results for getting through chemotherapy are great. It’s all plant-based—soy, peas, nuts, fruits, and veggies, but fermented. My immune system was terrifyingly weak; I had CIN 1, E. coli, sores, bleeding, and all sorts of issues, but after just one bottle and some Centrum vitamins, my PAP test came back clear. Give it a try, wishing you so much luck, Melissa Kim45, hang in there!

Girls, thank you so much.
😘

And thanks to everyone else who has ever shared anything here and given others the strength to keep going.

Mom is terribly thin; today I had to clean her up because she had a bowel movement and I didn't want her skin to get irritated overnight. There’s no muscle left, just skin stretched over bone. I don't even know when she lost it all. Her weight hasn't shifted that drastically; we haven't seen her at 35, 36, or 37 pounds in quite a while. During her last bath a couple of days ago, she looked different. For a few days, she’s been completely erratic, just acting wilder and wilder. She’s been smoking a lot, coughing, fussing, coming into my room in the middle of the night, just losing it. In the afternoons, she’ll lie down and then wake up—not just startled, but absolutely terrified—and start calling people on the phone a hundred times. The doctor isn't concerned (of course he isn't, since most patients with this diagnosis don't make it a year), and he won't admit her to the hospital, just for check-ups. He claims there’s nothing he can give her. They've handled us very smoothly, which I totally get.
On one hand, nobody would care for her like this, and her behavior would be a major issue, but on the other hand, I can't be away from work for too long.
I don't know what to do anymore.

He gave her Megostat, and right after the first spoonful, I felt like she actually looked a bit hungrier. Even though she eats more or less okay, it clearly isn't enough, and when she hits a bad phase, the whole thing is just horrific.

She has cut down on cigarettes drastically, yet she still gets caught badgering people, putting them in that awkward position where they eventually have to confront me.😁
I know there isn't much point in trying to forbid it, but honestly, there’s no sense in her just collapsing all over the apartment either. It’s all tied up in those bruises and rashes. On Sunday, she didn't have a single episode the entire day, which made me think, maybe things are finally looking up. Yeah, right.
Today she can barely stay upright, and I’ve lost count of how many times I’ve had to lift her up and help her move around. It gives me the chills whenever I see or hear her trying to stand, but what am I supposed to do?

Her doctor is pushing for some kind of IV infusions, but the specialist says no. I really don't want to put her through that—why subject her to more physical and mental exhaustion if it isn't actually going to change anything?

Sometimes she just completely drifts away, and seeing that is incredibly hard. She forgets who she’s even talking to. I just find myself waiting for the day something like this hits my brother or me. I haven't the slightest clue when that might be.

We have officially completed all the necessary steps...

The CT scan for my dear one came back okay.
However, his Alfa levels are still elevated... which means chemotherapy is our next step.
Some of you already know that I’ve personally navigated the path of chemo and treatment alongside my mother—so, am I scared? Not exactly. It is more like this constant, inexplicable knot of nausea sitting deep in my stomach. I can't quite put my finger on it.

Anyway, before we move forward, we need to get a second opinion in New York, and we also need to head over to a fertility clinic to freeze his sperm. The histology results indicated it is a mixed type seminoma. So... I was wondering if anyone here has visited a fertility clinic for a similar situation??

Oh, goodness, everyone... I am keeping my fingers crossed for all of you waiting on test results... I am so sorry I haven't been able to keep up with some of your stories lately, but I know you understand... We had people visiting us, and his recovery from surgery has been taking quite a while... just running around in every direction imaginable....

Melissa Kim45 said:My dear ladies, thank you all so much. 😘

And to everyone who has ever written anything here and provided strength to others to keep going...

Mom has become terrifyingly thin; today I had to clean her up after she went to the bathroom just so her skin wouldn't chafe overnight. There is no more body left, just skin stretched over bone. I honestly don't know when it happened. The weight loss wasn't even gradual like that. We haven't seen her at 35, 36, or 37 pounds for quite some time now. During her last bath a few days ago, she looked different. For a couple of days, she was completely erratic, getting more agitated by the hour. She was smoking heavily, coughing, acting out, coming into my room in the middle of the night, just losing it... then she'll lie down in the afternoon only to wake up not just startled, but utterly terrified, calling people on the phone dozens of times. Her doctor isn't concerned—of course he isn't, since most patients with this diagnosis don't make it past a year—and he won't admit her to the hospital, only for outpatient visits. He claims there is nothing he can give her. They have been very "kind" to us, in their own way. Not that I don't understand the subtext...
On one hand, nobody would look after her like this, and her behavior would be an issue, but on the other hand—I simply cannot be away from work for this long...
I truly don't know what else to do.

He prescribed Megostat, and after the very first spoonful, I had this fleeting feeling that she actually looked a bit hungrier. Although, she eats more or less okay, but it is clearly insufficient, and when she hits a bad phase, the whole situation becomes a nightmare.

Her cigarette consumption has dropped drastically, yet she still finds ways to harass people, badgering them until they are placed in incredibly awkward positions where they eventually have to confront me. 😁
I realize there is no great point in forbidding things, but there is also no point in her constantly collapsing around the house. She is covered in bruises and scabs. On Sunday, she didn't fall once the entire day, and I actually thought to myself, perhaps things will improve. As if...
Today she can barely stand, and I’ve lost count of how many times I’ve had to lift her and help her walk. A chill runs down my spine whenever I see or hear her trying to get up, but what choice do I have...

Her female physician is suggesting IV fluids, but the doctor says no. I wouldn't want to torture her further, destroying her both mentally and physically, if there is no real purpose to it...

Sometimes she just drifts away entirely, and it is so difficult to witness. She forgets who she is talking to. I just sit here waiting for the moment this hits my brother or me. I have no idea...

I am so sorry that things aren't better and that there still isn't a solution to help her gain weight and strength. I really hope she can manage to take the IV fluids so she might regain some vigor...

As for the falls—unfortunately, there is no other way than to constantly worry and watch over her. Though, you won't be able to sustain this forever...😢 Given your courage and how much of yourself you pour into ensuring she is okay, I am certain you will find a way to return to work while still managing her care...

Hang in there and please keep us updated! Sending love...

Linda Campbell said:My mom used to stick to fresh germs, popcorn, and raisins. I’ve also heard about those homeopathic stuffs, ........R. Regulat .....BLAS KEEP GOING

Along with some native propolis (she already finished one whole bottle), Mom started taking beta 1.3 Glucan today too (which I think I'll just order online next time, honestly, just to save some cash on the prices). I am a little worried that taking too much might be bad news since she just had bowel surgery, but this R. Regulat seems to have pretty solid recommendations out there...
Our oncologist told us, obviously, that she shouldn't be taking anything at all before chemo as long as she's eating okay 🙄 But I find myself trusting your experiences way more because it feels like doctors rarely recommend anything outside of their own specific treatment plans...

Linda Campbell, I noticed they recommended selenium, enzymes, and that "basenpulver" powder to you. Did any of that actually help?
I also saw some people mentioning injekcija imela, but now nobody seems to be talking about them anymore. How did you even get a hold of them? At first, I thought they were supposed to be given alongside the therapy, but if I understood you right, it sounded like you were giving them after the second cycle?

darkmaker70, hey there! How are things going on your end?

And yeah, Blas, hang in there!

shadowmason6 said:Those were being mentioned somewhere else too. Those ivy injections.Honestly, it feels like everyone just stopped talking about this out of nowhere. How were you guys actually getting them? At first, I thought they were given alongside the therapy itself, but if I caught your drift right, it sounds like you were starting them after the second cycle?

Hey everyone,
My sister's been getting those imela injections from a homeopath for months now. We pick them up at that pharmacy near the Dolac market. I honestly can't tell you exactly what they cost because we grab a bunch of different supplements there, so the total bill usually ends up being around... $333I honestly think they’re helping her.

wanderingharbor61 said:God, Joshua King77,
you've probably seen the stories on these boards—my mom is fighting melanoma.
She had surgery last week, and now she’s gearing up for therapy.

I was wondering if you’re undergoing any treatment yourself—or if there are specific supplements you use to boost the immune system?

Sending my best, hang in there!

Hi wanderingharbor61!
I’ve read through the posts here, so I'm pretty familiar with everyone's journeys. It’s truly incredible how brave and "strong" some people are—I have so much respect for them!
Since my PET/CT scan didn't show any signs of spreading just yet, I'm not on any active therapy.
For my immunity, I take beta 1.3 Glucan.

shadowmason6 said:Aside from the native propolis (she's already finished one bottle), my mother started taking beta 1.3 Glucan today (though I think I'll order that online next time just to save some money). I am somewhat concerned about overdoing it—considering she had intestinal surgery—but this R. Regulat seems to come highly recommended...
Naturally, our oncologist told us there is no need to take anything extra before chemo if her appetite is fine. 🙄At this point, I find myself relying more on your collective experiences; it seems doctors rarely suggest anything outside their own specific protocols.

Linda Campbell, I noticed you were advised to take selenium, enzymes, and that "basenpulver" powder. Did you actually find them helpful?
I also read mentions somewhere regarding injekcija imela, but now nobody seems to be talking about them anymore. How did you manage to get them? Initially, I assumed they were administered alongside the therapy, but if I understood correctly, you mentioned giving them after the second cycle?

darkmaker70, greetings! How are things progressing on your end?

And yes, Melissa Kim45, hang in there!

Our oncologist in Austria gave us a mandatory recommendation to use selenium, enzymes, and injekcija imela. We sourced them through relatives in Austria; they were about 100 USD per box, which I believe contained 5 or 6 ampoules. There are several varieties available, such as Iscador or Helixor; my mother used the latter. She administered them herself following her chemotherapy sessions. To clarify, it isn't during the chemo itself, but rather afterward—during the intervals between treatments. I neglected to mention a crucial detail earlier: after chemo, it is absolutely vital to consume massive amounts of fluids to flush the toxins out of the system as quickly as possible so the body can begin its recovery. It is paramount.
Injekcija imela is standard practice globally alongside all therapies for such severe illnesses, especially with chemo. It is only here in America that doctors tend to shrug their shoulders, appearing completely oblivious to anything utilized outside their immediate circle. They don't even attempt to educate themselves on things that don't fall directly under their jurisdiction. Our physicians had no clue about beta Glucan or similar products; some didn't even know what Megostat was. They are simply perpetually overwhelmed and buried in paperwork...
Injekcija imela acts as an anti-carcinogen and boosts the immune system. Along with everything else, do not neglect nutrition and, most importantly, herbal teas. Research which teas Breuss recommends for specific types of carcinoma. Definitely look into that product from Natura Viti I mentioned the other day—give them a call. Those are the enzymes you need.

I have one unopened box of Tarcev (150 mg) available for sale at $2.75. The package contains 30 tablets, with an expiration date of July 2010.
Typically, a single box of Tarcev retails for approximately $6.25.
If you are interested, please reach out via email at kresogrgic@yahoo.com. I will prioritize buyers who can provide medical documentation; I want to ensure this goes to a patient rather than someone looking to flip it for profit.
This medication is indicated for lung cancer and certain other malignancies (it appears to be used for pancreatic cancer as well).
It is essentially a "smart" genetic therapy which, in the case of lung cancer, seems to show higher efficacy in women and non-smokers.

This is actually my very first time ever posting on a forum. I have been reading through this entire thread—though I am currently running behind on work—and I have been feeling so much joy seeing all your positive test results, while also grieving alongside you for your loved ones. You all have already helped me so much, but I find myself in need of some advice. My stepfather has been diagnosed with gastric adenocarcinoma. Just two months ago he was perfectly healthy, but then this stomach nausea started appearing. He honestly thought it was just the result of eating a few too many pastries. When even a strict diet wouldn't settle his stomach, he finally went in for an exam. An ultrasound revealed some slight thickening of the stomach wall, and after a gastroscopy and biopsy, the diagnosis was confirmed. His markers didn't show anything unusual, and the CT scan showed only changes in the stomach and something undefined on the adrenal gland. He underwent surgery three weeks ago, but it was unsuccessful. They told us they essentially just performed a "bypass" so he could still eat, but removing the tumor was impossible because it has spread throughout the abdominal cavity, involving several organs and intertwining with the main vein and the aorta. Naturally, they gave us a prognosis (oh, how we love those prognoses), offering one estimate of about a month, and another suggesting three to five months. They haven't mentioned any further treatment. For now, he is sticking to pureed foods; fortunately, he still has an appetite, though the meals are tiny. What is bothering him most is what he calls "saliva," which forces him to vomit after certain meals (not always, but mostly in the evening). He says it is a clear liquid, which is why he thinks it is just saliva. Has anyone here had similar experiences, and how did you manage them? I tell him that this is likely quite normal so soon after surgery, but I don't think I sound very convincing to him. Oh, I have rambled on far too long. Please forgive me.