Osteolysis: Possible pelvic bone tumor and potential uterine Leiomyosarcoma

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.

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.

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.

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.

Hidensil is actually zoledronic acid—which, just so you know, has been registered here in the States as Novartis Aredia since October 2011.

It’s an infusion solution, so... yeah, you have to get it administered at the hospital. Any specialist who diagnosed the condition will definitely know exactly how to get their hands on it if it's needed...

Jose Miller3 said:Hidensil is actually zoledronic acid—which, just so you know, has been registered here in the States as Novartis Aredia since October 2011.

It’s an infusion solution, so... yeah, you have to get it administered at the hospital. Any specialist who diagnosed the condition will definitely know exactly how to get their hands on it if it's needed...

There is also Pamitor (Torrex Chiessi Pharma GmbH) available on the market.

Donna Miller4 — look, since this is an intravenous drug, the dosage isn't some arbitrary number; it depends entirely on plasma calcium concentrations and several other clinical factors. It must be handled under strict medical supervision, so you really need to sort that out and consult with a specialist first😉 regarding the "what," the "how," and whether you are even permitted to receive it at all, 🤷 just as Jose Miller3 pointed out.

Sam Kim12 said:There is also Pamitor (Torrex Chiessi Pharma GmbH) available on the market.

Donna Miller4 — look, since this is an intravenous drug, the dosage isn't some arbitrary number; it depends entirely on plasma calcium concentrations and several other clinical factors. It must be handled under strict medical supervision, so you really need to sort that out and consult with a specialist first😉 regarding the "what," the "how," and whether you are even permitted to receive it at all, 🤷 just as Jose Miller3 pointed out.

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???🤷

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.

Angela Wright said: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.

Thanks for the tips. I'm honestly not sure what the plan is yet. I have to pick up the mammogram results this Friday, then head to my mom's doctor. If it looks like we're facing a massive wait, I'll have to do something about it—summer is right around the corner, and once everyone hits the beach, everything slows down. What then? If it looks necessary, we'll go see Dr. Čepulić. I need to find out where he practices and which hospital he's at... Best,😢

There’s actually an even better option than Aredia called Zometa, which is registered here and can be bought without a prescription. An ampule (which provides enough for one IV dose to be repeated every three weeks) costs about $667. Aredia is also given via IV every three weeks, but the administration takes much longer—the infusion lasts several hours, whereas the Zometa infusion is only about 20 minutes.

At our oncology centers, you really need some heavy-duty connections to get them to cover Aredia through the hospital or Medicare or whatever else. They prefer those cheap little "Tic Tac" drugs like Bonefos; sure, they're all in the same class, but it's not exactly the same as drinking a budget house wine versus a bottle of Dom Perignon, even if they are both wine. You won't find Zometa at the clinics because, besides being the most expensive, according to the fascist guidelines from Medicare, it's supposedly reserved for men with prostate cancer that has metastasized to the bone. As for women with breast cancer metastasizing to the bone? Forget about it. That's why most female oncology patients have probably never even heard of this drug.

Nicole Long28 said:There’s actually an even better option than Aredia called Zometa, which is registered here and can be bought without a prescription. An ampule (which provides enough for one IV dose to be repeated every three weeks) costs about $667. Aredia is also given via IV every three weeks, but the administration takes much longer—the infusion lasts several hours, whereas the Zometa infusion is only about 20 minutes.

At our oncology centers, you really need some heavy-duty connections to get them to cover Aredia through the hospital or Medicare or whatever else. They prefer those cheap little "Tic Tac" drugs like Bonefos; sure, they're all in the same class, but it's not exactly the same as drinking a budget house wine versus a bottle of Dom Perignon, even if they are both wine. You won't find Zometa at the clinics because, besides being the most expensive, according to the fascist guidelines from Medicare, it's supposedly reserved for men with prostate cancer that has metastasized to the bone. As for women with breast cancer metastasizing to the bone? Forget about it. That's why most female oncology patients have probably never even heard of this drug.

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!😕

Does anyone know how to actually dial down the pain from osteolysis—you know, bone tumors—without jumping straight into chemo? Does stuff like "cold compresses" or hydrotherapy actually do anything? My mom is on Tramal right now, but it makes her feel absolutely nauseous, so she switches to Panadol extra sometimes since it’s easier on her stomach... If anyone has dealt with this, please weigh in. I'd love to hear your experiences. Thanks and cheers, everyone! 🤷

So, I just read somewhere that "zoledronic acid" is supposedly a total game-changer for treating osteolysis. They're claiming it's 10,000 times more powerful than your standard bisphosphonates, doesn't cause nasty side effects, and you only need it once a month. Sounds too good to be true, right? Anyway, I was wondering—can you actually get this on a prescription here in the States, assuming a specialist gives the green light, and what kind of damage does it actually do to your wallet?

It’s a shame that’s the specific issue you're facing right in the middle of everything... 😢
The folks at the pain clinics should really be able to give you an answer on this and maybe suggest a few more options.

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.

So, my mom is 84, and she’s been diagnosed with a leiomyoma about the size of a man's fist (roughly 10x10). Honestly, she isn't dealing with any bleeding or major complications right now. Two different gynecologists have checked her cytology and everything else, and they're all saying it's fine—just an intramural uterine leiomyoma. They want to follow up in six months since there's no sign of malignancy. The thing is, she’s in pain when sitting or lying down, but I don't think it's actually from the leiomyoma. It’s more likely from an old hip injury; she slipped on some stairs a few years back and banged her pelvis pretty hard. She’s been limping for about five months because this mass formed near her hip joint, which is making things tough. Her gynecologist thinks it has nothing to do with the uterine leiomyoma, but still. One doctor suggested surgery—taking out the uterus along with that mass on her pelvic bone (which is about 12x10cm). Given her age, does it even make sense to go through with something like that? How risky is an operation like that for someone in their 80s? Thanks a million!🤷

Hi everyone! I have a quick question: in the event of a Leiomyosarcoma diagnosis—specifically regarding sarcoma—should tumor markers be elevated, or are they typically only increased in cases of carcinoma? If anyone happens to know the answer, I would truly appreciate it. 😕

Megan Williams6 said:Hi everyone! I have a quick question: in the event of a Leiomyosarcoma diagnosis—specifically regarding sarcoma—should tumor markers be elevated, or are they typically only increased in cases of carcinoma? If anyone happens to know the answer, I would truly appreciate it. 😕

Unfortunately, there aren't specific tumor markers for sarcomas the way there are for carcinomas. Essentially, the markers currently available are designed exclusively for monitoring carcinomas. 😢

Donna Miller4 said:So, my mom is 84, and she’s been diagnosed with a leiomyoma about the size of a man's fist (roughly 10x10). Honestly, she isn't dealing with any bleeding or major complications right now. Two different gynecologists have checked her cytology and everything else, and they're all saying it's fine—just an intramural uterine leiomyoma. They want to follow up in six months since there's no sign of malignancy. The thing is, she’s in pain when sitting or lying down, but I don't think it's actually from the leiomyoma. It’s more likely from an old hip injury; she slipped on some stairs a few years back and banged her pelvis pretty hard. She’s been limping for about five months because this mass formed near her hip joint, which is making things tough. Her gynecologist thinks it has nothing to do with the uterine leiomyoma, but still. One doctor suggested surgery—taking out the uterus along with that mass on her pelvic bone (which is about 12x10cm). Given her age, does it even make sense to go through with something like that? How risky is an operation like that for someone in their 80s? Thanks a million!🤷

When it comes to age, honestly, probably not. But if that mass is seriously tanking her quality of life, then the option needs to be weighed. The reality is, the surgery itself might not be the primary concern; it's more about how the anesthesia could impact her overall health.
Personally, I'd go looking for a second opinion.