Posts by Angela Wright

Donna Miller4 said:So, Zometa is supposed to be better than Aredye, but they won't give it to you on prescription... Can women actually get Aredya? And how much does that cost? Also, is there anything else out there that helps manage pain from, say, a pelvic tumor??? Thanks and cheers!😕

If a specialist signs off on it, you can practically get your hands on anything in existence—even stuff that isn't officially registered here. The theory is that for non-registered drugs, it's handled through compassionate use imports, where the hospital eats the cost. But honestly? In the real world, the practice is a completely different animal.
When it comes to managing pain, that’s strictly the anesthesiologist's call.

Laura Campbell said:Just like you guys, I’m in an incredibly tough spot right now. I feel like this is the only place where I can find actual support and some useful info on what our next move should be... Basically, my mom was diagnosed with poorly differentiated adenocarcinoma of the lungs eight months ago. Since then, she's had surgery to remove part of one lung, followed by four rounds of chemo. She took those rounds hard—she dealt with almost every side effect imaginable, from nausea and vomiting to loss of appetite and hair loss. She’s lost so much weight that she’s down to just 99 pounds. Things seemed okay for a while, but the problems are resurfacing; she’s started feeling intense pain in her lower abdomen and back, which led doctors to conclude there's a tumor on one of her kidneys and ovaries. What’s strange, almost unbelievable, is that everyone seems to agree that LUNG CANCER DOESN'T METASTASIZE TO THE OVARIES—that it's practically impossible. They’re suggesting two more surgeries, first the kidney and then the ovaries, but we’re all terrified of how she'll handle them given how weak, exhausted, and frail she is... Still, she’s fighting and stays on top of all her meds, teas, honey, and everything else.

Right now, we're giving her noni juice every day, nettle tea, apricot kernel oil (vitamin B17), honey mixed with various medicinal herbs, sace, and sometimes chamomile, nettle, and yarrow tea along with Swedish bitters. On top of that, she’s taking various pills to boost her blood counts and vitamins. Please, I need advice, opinions—what do we do? Can she even survive two surgeries, let alone more chemo? Thank you so much from our whole family!!! Wishing you all the very best and lots of health and strength in your own battles!!!

It’s obvious Mom is in cachexia, and that absolutely has to be addressed with nutritional meal replacements like Prosure or Ensure. Once someone falls deep into cachexia, it is incredibly difficult to bounce back, and usually, things go downhill fast. Whether she’s actually fit for surgery right now is hard to say; it depends on her overall condition, which the surgeon has to evaluate. They weigh the risks and make the call.

I also have to point out that Mom is being overloaded with everything under the sun—from honeys and noni to those kernels that everyone clings to like a drowning man, even though they are nothing more than a heavy poison—cyanide! In that sense, she's doing her more harm than good because her liver has to process all of it, which just wears it down further. It’s no wonder she struggled so much with the chemo. Also, noni is notoriously hard on the liver, so you really should take a break from it. My strongest recommendation is to pick a maximum of three things from that entire list and definitely check with her doctor to see if any of them are causing harm or interacting with her prescribed medications. Once you settle on those three things, stick to them through the end of treatment and stop switching things up!

Linda Baker51 said:Thanks for getting back to me. My mom has already dealt with being hospitalized, having fluid drained, and all those procedures. On top of the medications she’s been taking for years to manage her cancer and diabetes, she’s now on daily diuretics, heart meds, and blood pressure pills. It’s painfully obvious that every round of chemo does more harm than good at this point. I honestly don't get why there's a protocol where they intentionally tank a patient's overall health with treatments that aren't even working anymore. Luckily, she isn't in pain, and as long as she isn't undergoing treatment, she actually gets to live a "normal" life. Sometimes I can't help but feel like they're just using her as a test subject for research.

Go demand straight answers and clear explanations from the doctor. That is literally what she's paid to do.

Donna Miller4 said:Yeah, I see there's also "Aredye"—pamidronate—which is also for osteolysis. But honestly, in our current situation, by the time someone actually sees an oncologist, they might as well be "trying to fix a house with duct tape." We're already in the fifth month, and Mom had her first round of tests back in January... the wait for testing is brutal. Her last thing was a mammogram, and we'll get those results this Friday. Her Ca 15-3 was at 49, though her other markers look fine. I read somewhere that given her age (83), that might actually be normal, or could be elevated due to benign issues—she has a leiomyoma and some ovarian cyst... plus there's that lesion on the pelvic bone. I'm doing everything I can to help her—I've got a blender and a juicer, so I make her fruit and veggie juices and smoothies three times a day—and her condition is pretty much holding at the status quo. She can still walk somewhat, but back in February, she couldn't move at all and could barely get out of bed. Now, it hurts whenever she lies down or sits. She doesn't have osteoporosis; she was tested for that too, it's just that specific spot—something is going on with the bone in her pelvis, probably from a fall she had 4 or 5 years ago... etc. Right now, my main question is: does this "Aredye" count as "chemotherapy" since it's an injection, or is it just a "standard medication" for osteolysis???🤷

Look, it really doesn't matter what category it falls into because you won't be able to get it without a doctor's order, and since it's administered IV, it's strictly for hospital use.
If you want to speed things up, your only real option is to go see a private oncologist. You could reach out to someone like Dr. Čepulić, for example, and consult with them.

wearycrane10 said:I don't think our beach trip is going to happen this year... She had a fibroid, but it turns out she's actually dealing with right ovarian cancer, which is a massive blow. I'm getting worse news almost every single day... On the bright side, she’s calmed down a bit; she's come to terms with how serious this is and knows the road to recovery is going to be long and incredibly tough. Right now, it's all in the hands of her doctors, and she just needs every bit of support we can give her...

and her 😢
I really hope they caught it early enough so it hasn't spread, and that the issues were mostly related to the fibroids, because if that's the case, things will be much easier to manage.
Stay strong.

Linda Baker51 said:Can someone please tell me what happens if a patient refuses chemotherapy? Does their oncologist continue to manage them, or does all medical care just stop?

Look, after years of battling illness—three different carcinomas and a total of 24 rounds of chemo plus months of radiation since 2004—my mom's heart has finally started failing, and fluid is building up in her lungs. She’s incredibly weak; she never fully recovered from that last round of chemo, yet her oncologist keeps pushing more treatments. When Mom stood her ground and refused, the oncologist basically said the medical board would decide her fate. After the last cycle finished, they didn't even bother checking her blood counts or tumor markers. Now, Mom is hospitalized because of her heart, and the scans show severe damage and shadows. Despite all this, the board still decided to push forward with more therapy.

She absolutely has the right to refuse chemo. Even if she stops the aggressive stuff, the doctor is legally obligated to provide palliative care—things like managing pain and symptoms—because she is still an oncology patient. Honestly, next time you see the doctor, it’s worth politely reminding them that under American law, the patient has the final say in their own treatment. It is the doctor's and the board's job to suggest options and explain the reasoning, not to steamroll the patient!
I’d also suggest taking her to an emergency pulmonary clinic immediately. They need to evaluate her, and she’ll likely need to be admitted because that pleural effusion needs to be drained via puncture, and she probably needs oxygen therapy. Normally, the oncologist should be handling this, but you'll likely find yourself stuck waiting for some "board decision" 😳 to resolve it. It’s better to bypass that bureaucracy. Be assertive, be direct about what she needs, and don't back down even an inch!

wearycrane10 said:Look, it’s the truth—she really should have handled this a long time ago, but honestly, I can't wrap my head around why she sat on it for so long. She probably felt a surge of confidence once she saw that myoma starting to shrink. The most critical thing right now is getting that surgery scheduled immediately. Honestly, it’s that vein that’s really keeping me up at night.🙂

Yeah, that just means she spent a massive amount of time ignoring the warning signs instead of actually going to her OB-GYN for follow-ups. It sounds like a classic case of "ignorance is bliss"—that mindset where people would rather stay in the dark than face a reality they can't control. But honestly, dwelling on how much time was wasted doesn't help anyone now. What matters is the immediate next step: she needs to get this surgery scheduled ASAP, and you need to be her rock. Don't let her spiral into those dark, pessimistic holes, and don't let her spend our phone calls breaking down in tears. We have to keep her head up. Statistically speaking, there’s a much higher probability that this is a benign growth rather than something malignant. Once the procedure is over, she’ll be past the worst of it. In a month, she’ll likely have forgotten all this stress and will be busy planning a trip to Florida. 😉

You need to push for an anesthesiologist to step in and take control of his pain management plan! If morphine is off the table due to some medical contraindication, there are plenty of other effective alternatives available. Pain isn't just something you "deal with"—it’s a clinical issue that can, and absolutely must, be treated!

Sam Kim12 said:Maybe I’m off base here, but since we're talking about a drug used specifically as a metastasis blocker, I suspect you’ll need a formal medical history from a specialist explicitly stating this medication is required—that’s the kind of documentation a general practitioner would need to actually prescribe it for your mother. Now, if the drug isn't covered by Medicare, you're looking at what we call a private prescription, which a specialist can write without any issue.

If I were in your shoes, I’d get on the phone with your mother's primary specialist immediately to discuss this specific medication. You really need to ask if it’s even appropriate for her—everything depends on her unique physiology, after all, and every single drug comes with its own set of side effects.😉

BTW: try giving the Frebel pharmacy a call to see if they even stock that medication here in the States; if they don't, you might have to look into sourcing it from overseas where it's already registered.

It looks like the drug isn't even registered here in the States, at least not for that specific indication.

Donna Miller4 said:Hey everyone. So, my mom is dealing with osteolysis, and I came across this drug called "Hidensil" that’s specifically meant for that. The thing is, I have no clue how to actually get a hold of it. Can a regular GP just write a prescription for it, or is there some other way to go about it? Does anyone here know anything about this??? Thanks a million.

It's pretty straightforward. Once a specialist recommends it—meaning they note it right in the medical history—your GP can then write the actual prescription. The catch is that the drug has to be officially registered and approved here in the US first.
If it isn't, there's simply no legal way to obtain it, and from what I can tell, that seems to be the situation here. I haven't seen any mention of it being available locally, unless it happens to exist under some generic name.

wearycrane10 said:About five years ago, she ended up in the hospital where they diagnosed her with uterine fibroids. She was dealing with heavy bleeding and actually needed a blood transfusion. Back then, the doctors suggested surgery, but since it wasn't an emergency, they told her we could just monitor it. Since she entered menopause around that time, the fibroid stayed under control—it even shrank a bit. But for the last three months, she hasn't been able to sleep, she’s barely eating, and she’s dropped 5 pounds, which is a massive amount for someone her size at 58. Plus, she’s had this persistent swelling on her left thigh for quite a while... one leg is significantly thicker than the other. She just chalked it up to work stress and menopause. Then, a week before Easter, she collapsed from exhaustion and ended up back in the ER, though they discharged her again. They just told her her iron levels were dangerously low and her blood pressure was high. To them, it sounded like nothing was wrong. My mother is a dentist, so she understands medical basics and knew instinctively that something was off. She scheduled an appointment with a private cardiologist because the main issues were arrhythmia and constant fatigue. He prescribed some meds to stabilize her rhythm. Meanwhile, our primary care doctor put her on about six different medications, ranging from sedatives for sleep to iron supplements. A week ago, she felt sick again, struggling to breathe, and that leg started swelling even worse, so our doctor sent her to the nearest hospital. They ran every test imaginable, and the final diagnosis is a tumor. It looks like it’s positioned awkwardly, pressing against a vein (which explains the swollen leg) and her bladder. The doctor simply stated the situation is serious and needs to be removed immediately, but they don't perform that specific procedure at this facility, so they sent all her records over to Mayo Clinic, where she'll likely undergo surgery...

Susan Adams66, I'm so glad your mother is doing well; I would give anything to have mine healthy again too...

Look, neither you nor your mom should spiral into drama just yet. It doesn't automatically mean it's malignant. It’s more likely to be benign, as benign tumors are usually what grow to that kind of size. However, the situation is critical because of that vein; if the blood flow gets cut off, you're looking at losing a limb, kidney failure, or worse. That’s why it has to come out urgently. It’s a shame it wasn't dealt with sooner. Personally, I don't get why women who aren't planning on having kids anymore would choose to suffer through these symptoms for years rather than just getting it fixed right away.🤷 It’s like a sponge that just soaks up toxins and expands until something like this happens.
I once shared a hospital room with a nurse who works almost exclusively in a gynecology clinic; she sees this every single day. She told me about a woman who let a fibroid grow into something the size of a toddler's head before seeking help. That woman had surgery, spent ten days in the hospital, and was completely fine after five.
Hang in there, everything is going to be okay.

crimsonwalker20 said:I never thought I’d be the one posting about this. No matter how much you try to bury your feelings or convince yourself that things like this happen to other people—not to you, not to your family—reality eventually hits. Four years ago, my little sister went in for what was supposed to be a routine, harmless mammogram checkup. That’s when they found the changes in her breasts. Before we could even process it, she was heading into surgery, then chemo. Things seemed to stabilize for a bit, but then came the heavy-duty stuff, the most aggressive form of treatment. Then, just last month, her attending physician sat her down and told her the chemo was doing more harm than good. It’s over. Since then, watching her has been nothing short of an agony. It’s the slow, agonizing decline of a young woman who has essentially been left at home to fade away. She is vanishing right before our eyes. Her little boys, ages 7 and 10, don't even have the words for it; when I ask them "how is Mom?", they just tell me "she has a cold." And there she is—this fragile woman, left entirely alone to face the end. I’ve tried everything I can to help, but honestly? It feels like a total failure. How am I supposed to ease her pain? I just don't know.

Have you guys looked into getting a second opinion elsewhere? There's a world-renowned expert in breast cancer treatment in Barcelona, Dr. Baselg. Have you considered seeing him?
There is always one more option to explore. Please reach out to the "All for Her" association.

dustybadger81, I am so incredibly sorry for your loss 😢
Look, life just keeps moving forward. Things are going to feel different now, but eventually, you'll find yourself smiling again, carrying those memories and that love right there in your heart. Just hang in there for now and let her rest in peace.

Elizabeth Hill50 said:I absolutely loathe this damn disease that has completely wrecked her life. Because of it, she lost her sight at just 25 years old, and now she’s fighting this battle every single day... Honestly, only God can help at this point because, from a medical standpoint, there's nothing left to be done. I will never forget that day when the light just vanished from her world—when faces disappeared and everything around her just dissolved into total darkness. She became withdrawn, helpless, blind... 😢our house became a place ruled by grief, where loneliness became our constant companion. Every morning, I find myself asking—and I still do—what does it actually feel like to open your eyes and see nothing? To have no idea where you're supposed to go or how to function? It breaks my heart. I'm constantly crying, wondering how things moved so fast, how she could lose her vision in just a week... so many questions, yet so few answers. 😢 Please, is anyone else going through something similar? Does anyone know if eye nerves can ever recover? I'm becoming so desperate and depressed because I'm chasing something impossible—I'm praying for things to just go back to normal. 😢

Unfortunately, you can't just repair nerves once they're gone. 😢
She’s going to have to dig deep and find the strength to use whatever abilities she still has left to live a full life. You need to be her rock through all of this. Look, the reality is what it is; crying and spiraling into despair isn't going to change anything. You have to look forward and learn how to live within this new reality instead of mourning what was lost. She hit a massive roadblock, but believe me, it isn't even the worst thing life can throw at you. She still has talent, she still has opportunities, and she still has every chance in the world to be happy and successful—just in a different way.
Here is an example of how one woman handled it.

And you really need to focus on yourself here, too. At the end of the day, this is primarily something your sister is navigating. By drowning in your own depression and desperation, you're actually becoming more of a burden to her than an actual source of support.

Paul Edwards5 said:Has anyone here dealt with anything remotely similar to this?🤷

A mesenchymal tumor is essentially a sarcoma. Unfortunately, we’re dealing with a rare breed here, and they tend to be incredibly aggressive. There are dozens of different types out there, all varying wildly in malignancy depending on where they take root and what stage they've reached. Generally speaking, when you're facing a sarcoma, the reality is pretty blunt: finding an effective chemotherapy is often a massive uphill battle, which means surgical removal remains the gold standard and our best shot at getting ahead of it.
When it comes to Dr. Herceg, he’s easily one of the top experts out there for rare tumors—specifically sarcomas—alongside Dr. Šantek. If you're looking for someone who actually knows their stuff regarding those specific cases in the US, they're the ones. Look, the guy isn't bad; he just carries himself with this certain level of defensiveness and a hint of arrogance that can be off-putting. But don't let that throw you. At the end of the day, he's someone you can actually sit down and have an honest, open conversation with.
Nolvadex did exactly what it was designed to do—it slowed down that tumor growth. It did its job. But unfortunately, when a relapse happens, you're facing the reality of the situation.

Here’s my take on this. You absolutely have to seek out a second opinion abroad at one of those specialized centers of excellence dedicated to sarcomas. Don't just settle for whatever is right in front of you; go where the real experts are. America is far too small to offer any real opportunities for clinical trials regarding these kinds of rare tumors. Because the patient pool is so tiny, the specialized knowledge and research just aren't there. It’s a harsh reality: whatever advanced treatment you might need next, there is a massive chance it won't be covered by Medicare. You'll likely be left footing the bill yourself for incredibly expensive drugs, and even if you have the money, fighting through the red tape to get them approved can be an absolute nightmare. Honestly, my advice? Get out of the country however you can. If I were in your shoes, I’d look into Dr. Paolo Casali at the National Cancer Institute in Milan. Do some digging online—their website and contact info should be easy enough to find.

Susan Gonzalez22 said:Yeah, if there’s any silver lining here, it’s that surgery is actually an option to get that tumor out. She’s being brave and staying positive, though she might be a little naive about the reality of it all—and I really hope that optimism isn't just a mask she's wearing for the world. We need to push her to talk about it; if she won't open up to us, she at least needs to find someone inside the hospital to lean on. She brought it up yesterday, so we need to see today if they can actually make the procedure happen. There’s no other way forward than to dig deep, find every ounce of strength, and just grind through this day by day. Right now, our sole focus has to be getting that surgery scheduled for next week and praying it goes perfectly so that tumor is gone. 🙂

Look, you have to face the music right away: those people are there to process you. They basically just Google "humanitarian gestures" to look good. The bottom line is that Mom needs this surgery ASAP. That’s the surgeon's job; everything else falls under the oncologist. You have to accept how these people communicate—or don't—and stop expecting more. Just lock in, focus entirely on your own situation, and figure out how to solve the problem at hand. There's no other way to handle it; I'm telling you from experience, and I'm sure anyone else who's been through this will back me up.

stormygardener34 said:I’m looking for some advice here... I’ve mentioned this before, but we’re dealing with a patient with stage 4 inoperable lung cancer. They’ve finished three out of the six planned chemo rounds (paclitaxel and carboplatin), but now they’re heading in for an ultrasound because it looks like a massive amount of fluid is building up in the lungs. After the scan, they plan to puncture that area to drain the fluid—which apparently isn't much—and the doctors are suggesting the fluid buildup is actually a sign the cancer is retreating. Just yesterday, there was talk about administering medication directly into the lungs.
Who can you actually trust? These doctors are incredibly tight-lipped... we're at a major hospital like Mayo Clinic, where getting any real time with the specialists is nearly impossible. I suspect some of you have dealt with this nightmare before.
Please, I need help and guidance.

Go find a senior nurse on the oncology ward, specifically Sandra Karabatić. She also heads up the Sail Association for lung cancer patients. She is an absolute saint and will go out of her way to sit down and explain everything you need to know.

mistybadger55 said:We were actually at the hospital seeing Smith. There is absolutely zero chance that any doctor from that facility is going to go against the opinion provided by one of their own colleagues.🙂 It’s better not to drag this out; just show up Monday for the appointment regarding whole-brain radiation. We'll see how things play out from there.

Go see the neurosurgeon over at Vineyard, but leave the reports and the opinion from the hospital behind—just bring the MRI scans.

Megan Wilson8 said:So, I’m 25 and living my life just like any other young person. But I have a massive issue with my feet. They smell absolutely terrible. And it isn't just after wearing sneakers all day; even if I wash them thoroughly, put them on, and walk for just half an hour, the smell comes right back. It’s honestly embarrassing.

Also, since I've been spending most of my time in shoes lately, I've noticed my feet sweat even more, and the skin on my soles and between my toes has become incredibly dry and cracked.

I wash my feet regularly and use various sprays, but nothing works. Should I see a dermatologist or someone else for this? I’m really not sure who handles this kind of thing.

And please, recommend anything for immediate relief until I can actually get to a doctor, because right now, it's pretty gross.

You probably have athlete's foot. You're going to need an antifungal, so go see a doctor so they can prescribe something specific.
Pick up some pure lavender oil—it's a fantastic natural antiseptic—and try doing foot baths. Just drop about 5 or 6 drops into a basin of warm water mixed with a spoonful of baking soda. Also, once you've soaked your feet, dry them off with a clean towel that goes straight into the laundry immediately afterward. Apply some Nivea lotion, maybe mix in a few drops of that lavender oil, and massage it gently into your skin, making sure to get between your toes. Your footwear absolutely has to be made from natural materials—think leather or canvas—that actually breathe. Forget those plastic-heavy sneakers and synthetic shoes. Grab some leather sandals or canvas flats for the warmer days. Same goes for socks: stick to cotton. Throw away all that synthetic stuff; it’s basically a breeding ground for whatever you're dealing with.
I'm afraid you might have to toss your old shoes, at least the ones you can't sanitize in a high-heat washing machine cycle or disinfect some other way.
Oh, and you can also drop some lavender oil onto the insoles of your shoes.👍

stormywolf10 said:It’s easy for you all to say, but this is my son we're talking about!!
I'm genuinely freaked out because she was acting incredibly weird and dodging every single question I asked...

Look, honestly? If I were her, I’d be running for the hills too—especially if you were putting on some kind of dramatic performance...☕
It's way more likely that your kid passed some strain of strep throat to the dog than the dog catching rabies from your child.

Do yourself a favor and get a dog. You'll be calmer, happier, and your kid gets a front-row seat to learning how to coexist with nature through healthy socialization. Highly recommended!

Anyway, I'm off to go give my little Yorkie a big kiss.😍