Honestly, this is driving me crazy because I’m dealing with this constant itching, but the second I actually try to scratch it, there’s nothing there. It’s like my skin is completely deadened; basically, the entire area from my belly button down to my waistline feels totally numb. 😢
hollowridge88 said:So you're saying whenever there are lumps, the cancer has already spread?! My God, I can't believe it.😢
😢 Cancer cells are constantly circulating through the bloodstream and lymphatic system, which is why metastases can easily take hold anywhere. Hang in there and make the absolute most of every single precious minute you have with your mom. Do everything in your power to keep her comfortable—make sure she’s full, hydrated, clean, and surrounded by people who love her and the warmth of everyday life, as much as her condition allows.
It kills me that I can't offer anything beautiful or encouraging to say. Unfortunately, I know exactly how you feel because I've been in those exact shoes myself.
Bryan Foster4 said:On the Bates clinic website, it says:
Uterobrush plus endometrial aspiration plus PhD equals $950 Endometrial aspiration plus PhD is $850 Biopsy, polyp ablation plus PhD equals $850
Is that the full breakdown?
To be honest, these terms are all brand new to me. I initially assumed she would need to undergo a biopsy again, but seeing as you clearly understand the nuances of these procedures, I feel much better. Thank you for the well wishes and the advice. 🙂
That process involves taking a tissue sample and sending it off to a hospital pathology lab for the PhD analysis. Essentially, the price covers both the collection of the sample and the fee they pay the hospital to process the PhD. Based on what you found, these are all gynecological procedures. In some cases, getting a repeat PhD might even be free if her doctor writes a referral for a second opinion, especially if she's having the re-analysis done at a facility like Rib or Firule. Performing a repeat PhD or histopathological analysis works by taking the existing slides from Mercury—just like I described—and having a different pathologist examine them under a microscope. They use specific staining techniques to pinpoint exactly which cells they are looking at, determining if they are malignant and, if so, precisely what type. Not all malignant cells are built the same. In fact, this specific data is the most critical factor in cancer treatment because everything hinges on it. An oncologist relies entirely on that report to decide which treatment protocol to follow and which medication to prescribe.
I think you guys missed my point entirely. The PhD testing is performed using tissue samples that have already been harvested from Mercury. Mom doesn't need to go anywhere for this. A PhD test is actually the most critical diagnostic step because it identifies the exact type of tumor, and that specific detail dictates the entire treatment plan. You have to be 100% certain about the diagnosis, because if you apply the wrong therapy, it’s fatal. Repeating the PhD test isn't an expensive undertaking when you consider the payoff. To give you an idea of how much is at stake, let me tell you about a situation involving the husband of a woman who reached out to me. Her husband collapsed in the bathroom and ended up in the hospital. They ran an MRI, told her it was a tumor, and the PhD puncture indicated suspected glioblastoma. He went through 30 rounds of radiation while waiting to start chemo with Temodal. The wife was restless and decided to send the samples along with all the other medical records over to the USA for a second opinion. At two in the morning, they called her frantically, telling her she had to pull her husband off radiation immediately; apparently, he didn't even have a tumor—it was a stroke. Now the man is dealing with serious illness on top of having undergone unnecessary radiation; I honestly don't know how he's still standing. I'm telling you, people make mistakes, and sometimes things look like one thing, even though those with more experience will tell you it's something else entirely. For anyone dealing with these kinds of unusual or atypical conditions following a malignant diagnosis, I always recommend re-running the PhD using the existing tissue samples. Wishing you all the best, and I hope Mom gets through this.
hollowridge88 said:They’re everywhere—across her chest, stretching from the breasts up to the neck, under the armpits, all over her back, and even on the leg she’s struggling with...
Unfortunately, we're looking at metastases that are aggressively infiltrating all sorts of connective tissue. 😢
Bryan Foster4 said:I understand. Reaching out to the manufacturer would certainly be a prudent move, as they have a vested interest since it isn't officially registered as a standard medication yet.
As for her condition, even the doctors seem somewhat perplexed, which is the crux of the matter. It is highly unusual for a disease of this nature to fail to progress. He mentioned personally that he intends to petition Medicare for the drug and will do everything in his power to secure it. I have no desire to hold a negative view of the physician, but I suspect he will pursue this for professional development. If one looks him up online, he is ranked among the top 50 oncologists globally, and this is likely a case where he can significantly deepen his expertise. Perhaps this could result in a success story that helps establish treatment protocols for everyone suffering from this illness in America and beyond.
The drug is registered for the indication, it's just not currently on the Medicare coverage list for that specific use. Honestly, I don't see why, because Nexavar is primarily for hepatocellular liver cancer, and it's already on the Medicare list for kidney cancer. Anything that's registered is technically available for treatment. You can even use it "off-label" if there are published studies proving it works. Regarding drug registration, it's really not the hurdle it used to be in America; once we aligned with the European Union standards, we essentially gained access to everything registered within the EU, unless our own FDA explicitly bans it.
That said, I’d strongly advise getting a second opinion on her tissue biopsy somewhere abroad. Given how atypically this tumor is behaving, there’s a real possibility the initial diagnosis was off. Since she’s facing oncology treatment, this is absolutely critical. Submit a formal request to pick up the tissue samples from the pathology lab at Mercury on a release form for the purpose of repeating the biopsy (seeking a second opinion), then choose a different clinic to run it through. It could be a major hospital like Mayo Clinic or Johns Hopkins, but my honest recommendation is to go to one of the massive specialized clinics overseas just for the sheer volume of experience they have. Where there's more patient turnover, there's a much higher chance they've seen a case exactly like this before.
Nexavar isn't on the Medicare formulary for my mom's specific diagnosis, but there's a loophole. Basically, if an oncologist prescribes a drug that's off-list and submits it to the hospital board for approval, the hospital budget picks up the tab. It’s a pretty messy workaround because hospital budgets are notoriously thin—especially for high-cost drugs—and thanks to some incredibly stupid regulations, you can't just go out and buy the medication yourself. You need a doctor's prescription first, then you have to try to claw the money back from the hospital to get treated there. Sometimes people manage to cut a deal with their doctor to operate in that gray area. The third option is, in my opinion, the best move and it shouldn't cost you anything to try. You need to find out if the manufacturer's local US branch has any interest in donating the necessary doses. That's something you should run by Eduard Vrdoljak. Honestly, you could just crunch the numbers yourselves and start asking questions. It’s not uncommon for pharma companies to find these types of arrangements interesting as a way to pressure Medicare into expanding its approved indications on the official list.
Ronald Hughes10, look, if that’s what Mom has decided, then that’s what she’s decided. Some people will tell you she’s making a mistake, but honestly, others who have stood in those exact same shoes will probably tell you she made the right call... The reality is this: we are talking about a terminal illness. At this stage, the goal shifts to palliative care—managing the symptoms and actually improving her quality of life rather than fighting a losing battle. Try sitting down with her and explaining it like this: tell her you respect her decision and that you accept her choice not to pursue aggressive treatment, but ask her, out of respect for you and your own peace of mind, to at least embrace palliative care. You should also reach out to a local hospice organization. You can find plenty of contacts online; just give them a call. They have field volunteers who specialize in this, and they can help you figure out what else can be done to make things easier for both her and for you. Keep being this brave.
Amy Howard54 said:To give you the short version of my allergy situation: I’m allergic to nickel, which actually stemmed from occupational asthma. I have to be incredibly careful about what I eat to avoid an allergic reaction. But lately, I’ve started reacting to formaldehyde. It’s a toxic component that causes my throat to swell up and makes me feel like I'm suffocating if I come into contact with it. My biggest headache right now is finding decent shoes. It feels like almost every manufacturer out there uses formaldehyde in their process. Has anyone else dealt with this kind of allergy? Does anyone know where I can find footwear that's formaldehyde-free? Thanks in advance.
From what I understand, any clothing or footwear treated with formaldehyde during manufacturing is banned in the USA, so it really should be regulated here too. Usually, it's products coming out of China or India that contain it. Your best bet is to stick to brands that manufacture entirely within Europe. In a weird way, you might be lucky that you can detect it immediately.
Because the disease has already done its damage and the liver is starting to fail, you run into a massive risk: if a mechanical drainage procedure causes a leak, it creates a void that just leads to an even bigger spill. That’s why doctors only resort to punctures as a last-ditch effort—they know they can actually end up making things worse.
steeleagle152 said:My dear dad lost his battle with that monster tonight. :'(
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Please accept my deepest condolences.😢 I hope you and your family find peace as you mourn him and eventually find the strength to move forward. Hang in there.
wanderingmarlin16 said:Hey everyone, I know this thread has been around for a while, but Google eventually steered me your way. About four years ago, my mom was diagnosed with papillary thyroid cancer—the kind that had already started spreading toward her shoulder and head. The surgery went well, and after she finished her radioactive iodine treatments, the cancer seemed to be in remission. However, about three weeks ago, she noticed some new lumps on her neck. After running the standard tests and scans, her doctor mentioned something about "differential carcinoma." He didn't really sit down to explain what that actually implies or what specific type of cancer we're looking at now, so I'm hoping someone here might have some insight into what that term means.
It doesn't matter how old the thread is; the issue is you're in the wrong place. The Thyroid has nothing to do with lung issues.😉 Here’s a quick pointer before the mods move this: http://www.ncbi.nlm.nih.gov/m/pubmed/21167375/ http://en.m.wikipedia.org/wiki/Thyroid_cancer Basically, we're looking at a thyroid cancer involving mixed cell types.
Listen, I don’t have the energy to sugarcoat things for people who can't grasp simple concepts. If you want someone to hold your hand and tell you everything is going to be fine while you make terrible decisions, go find a life coach. I’m just here to state the facts, however much they might bruise your ego. Most of the "advice" floating around these boards is nothing more than a collection of delusions wrapped in optimism. It's exhausting. Either get it right or stop wasting my time. kaže: So, what? You’re telling me there aren't any pills or supplements out there that can actually make this easier?
I haven't heard of anyone actually fixing the issue yet. The only thing people are doing is sucking on hard candy just to try and mask the sensitivity. 😢
I don't know what to tell you. People love to talk, but they rarely actually listen. It’s always the same cycle of noise and zero substance. If you want my take, I'll give it to you straight: most of this is just clutter. Stop overcomplicating things and look at the facts. That's how you actually get anywhere. kaže: I know this isn't strictly on-topic, but I'm new here and I really need some help. Lately, my legs and feet have been tingling multiple times a day, and I've even started getting cramps. On top of that, I’m dealing with dizziness, feeling completely disoriented, and these occasional dull pains on the right side of my head—almost like something is stabbing me. Every time I stand up, the world spins so hard that I frequently end up flat on the floor. I've also started having issues with frequent urination, pain in my lower abdomen, and a constant sore throat. I have no idea what to do. I've been scouring the internet for answers, but everything I find looks terrifying, and honestly, I'm scared to go see a doctor because I don't even know how to begin explaining all of this. If anyone can offer any kind of guidance, please. I'm sorry if this is out of line, but I am genuinely terrified.🙂
Look, you have a whole laundry list of symptoms here that a doctor actually needs to diagnose. It’s impossible to make any kind of call without a proper exam or actual testing. For all you know, you could be dealing with an electrolyte imbalance, and you need to figure out what's driving that. For God's sake, woman, not every single pain, dizzy spell, or cramp is cancer. In reality, most of the time, it isn't. Be realistic and take some responsibility for your health—go see your primary care physician for a basic checkup. A simple blood or urine test might give you the answer you're looking for, so stop guessing and get some facts.
restlessraven44 said:Here I am again. For those who aren't up to speed, I’m dealing with ovarian cancer that has spread to other organs. They’ve already had to remove my ovaries, fallopian tubes, appendix, uterus, lymph nodes, peritoneum, a section of my colon, and they even had to scrape the liver. I’m scheduled to start my first round of chemo very soon, and in the meantime, they handed me this list of supplements: Megostat, Gatorade, extra strength Tylenol immune support (750mg), and some ImmunoAHCC capsules. Is it safe for me to take all of this before chemo kicks in? I have no idea how dangerous it could be to mix all these things together.
Pick three supplements so you can actually track how each one affects you and put together a combination that makes sense. You absolutely have to let your doctor know exactly what you're taking! Just don't touch any of them on the day you have chemo or the day right after. It’s much better to stick to using supplements during the gaps between your cycles.
restlesstiger102 said:Does anyone know how to deal with that metallic taste in the mouth after chemo? Basically, my dad can't stand any food or drinks because everything tastes like pennies...
Has anyone dealt with this or found anything that actually helps?
Unfortunately, that’s a super common side effect and it’s incredibly tough to get rid of. You pretty much just have to grit your teeth and power through it.
As far as baking soda goes, all it really does is neutralize stomach acid.
littlemole said:Hey, I wanted to jump in here too—ever since my mom was diagnosed with advanced breast cancer a few months back, I’ve been obsessively scrolling through forums, reading testimonials, and swallowing every recommendation I find... clearly, we’re all just circling the same drain of desperation here.
Look, you shouldn't be stacking more than three proven supplements, and if you do use them, they need to be part of a logical plan from start to finish. Beta glucan is an antioxidant that binds to free radicals, which means taking it during active therapy can actually tank the effectiveness of the treatment. It makes sense to use it during those breaks between cycles to help the body recover and gear up for the next round. As for apricot kernels, I’m going to keep repeating what I’ve said on this forum: it’s nothing more than cyanide. It’s a poison that wreaks havoc on the liver and can cause dangerous interactions with other medications. Luckily, since you're giving your mom beta glucan, it might neutralize some of that damage. And baking soda? I honestly have no idea what you're hoping to achieve with that. You probably read some of those Simoncinij ramblings, but seriously, don't go off a cliff just because you're desperate. I know exactly how you feel; I was standing right where you are. Just be smart about this. Look for legitimate studies that prove something actually works or at least won't kill you. Don't forget that the road to hell is paved with good intentions.
High bilirubin levels are, unfortunately, a sign that the liver is starting to fail.😢 I’m going to stop posting about this because I don't want to be the one bringing everyone down or killing the mood, but you have to realize that when a diagnosis reaches this stage, treatment becomes more of an experimental attempt than a guarantee. I wouldn't suggest taking any random supplements either; when the liver is in this condition, even processing standard food puts an extra strain on the organ and causes more damage. Try using Ensure or a Prostate cancer treatment nutritional drink instead. If your oncologist recommends them, you can usually find them at major pharmacies. A single carton provides all the nutrition you'd get from a typical full meal.
mistyjackal842 said:Thanks for the input. I'm 36, and I've never actually had that ultrasound done myself, but my mom has been dealing with circulation issues in her legs since she was 50, including frequent vein thrombosis. One clot actually traveled to one of her kidneys, eventually making it non-functional. Her other kidney stayed working for a while, but it's also starting to weaken over time. An ultrasound just shows the physical structure of the kidney, not how well it's actually functioning.
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Blood clotting issues can definitely be genetic—it's called thrombophilia. A lot of women don't even realize they have it until they're pregnant. You can get specific genetic testing done, though those tests aren't exactly cheap. However, given your mother's medical history, if anything suspicious pops up in your own results, there's a good chance Medicare might cover it. Since you've had healthy pregnancies in the past, did your mom have any complications during hers?
mistyjackal842 said:Does that mean people under 40 should be getting abdominal ultrasounds every single year too?
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No, I’m talking about an option you might find through supplemental insurance—like when your plan includes one annual physical that covers an abdominal ultrasound. It's a proactive move. A lot of people end up catching kidney or gallbladder stones, fatty liver issues, or even suspicious growths early enough to actually do something about them.