Support for families dealing with cancer and other serious illnesses (Part II)

If anyone’s looking for some Ensure (vanilla), just shoot me a DM! I'm over in Washington, D.C.

ruggedfox11 said:Angela, you mentioned we should consider whether whole-head preventive radiation is actually a good move.
Why though?
What kind of side effects does non-targeted head radiation cause?
What are the actual potential consequences of doing something like that?

Back when I was volunteering with a local nonprofit, I attended an oncology medical conference down in Key West. There was this one presentation by a neurosurgeon who tore into the whole idea of invasive head radiation. His main gripe was that it creates these brain lesions as a byproduct of the treatment itself. It gets to a point where doctors can't even tell the difference between a tumor lesion and a lesion caused by the radiation, making it nearly impossible to accurately assess the patient's status or figure out the next steps for treatment. The brain is incredibly delicate tissue; once you damage it, there's no going back. It’s a total gamble—it's essentially Russian roulette regarding which medical center you end up at, and more importantly, how much of a person's quality of life they sacrifice just to manage their diagnosis.
From what I could gather, the experts aren't even on the same page about this stuff. On top of that, patients are rarely given the full picture, which means they never truly get the chance to weigh the risks and decide if they even want to go through with it.

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Greetings. Has anyone here had any personal experience with the new Mayo Clinic Radiochirurgia facility in St. Louis?
What are the actual results like? I am trying to determine if they strictly provide chemotherapy or if they offer more advanced therapeutic options as well. Furthermore, are their fees prohibitively expensive? If anyone possesses more detailed information, please respond; this situation is quite urgent. We have already submitted the medical records and are currently waiting for them to call us back, but I have no idea what the typical wait time looks like.

dustyscout8 said:Hi everyone! Has anyone here actually been to that new Mayo Clinic?"
What’s the experience like there? Do they just offer chemotherapy, or do they provide other types of therapy as well? And are they outrageously expensive? If anyone knows anything more about this, please let me know—it's quite urgent. We're currently waiting for a call after sending over our test results... we have no idea how long the wait will be.

We haven't been there ourselves, but we do know they don't administer chemotherapy. As for the cost, I can only speculate—an operation like that out here might run you around $10,000. One thing we learned is that they won't even look at your test results without an in-person consultation first; and secondly—as I mentioned earlier—they won't even see or touch a patient if the illness isn't properly stabilized (that was something my husband's pulmonologist told us).
If you happen to come across any newer information, please feel free to share it. :-)

Angela Wright said:A while back, through my work with a local non-profit, I attended an oncology medical conference down in Key West. There was this one presentation by a neurosurgeon—really striking stuff—where he was criticizing the approach of invasive cranial radiation. His main concern was the risk of creating brain lesions as a side effect of the radiation itself. He argued that it’s becoming increasingly difficult to distinguish between actual tumor progression and damage caused by the treatment, which makes it nearly impossible to accurately assess the patient's true condition and decide on the next steps for treatment. The brain is such incredibly delicate tissue, and once you damage it, that damage is permanent. It really raises the question of which treatment centers are essentially playing Russian roulette—and more importantly, how much quality of life a patient actually gains versus what they lose because of such an aggressive approach.
In my estimation, the medical community isn't even in total agreement on these matters yet. On top of that, patients are rarely given a clear explanation of these risks, which leaves them unable to weigh the pros and cons and make an informed decision about whether they even want to proceed.

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https://www.oncolink.org/frequently-...ctic-radiation

I spent some time digging around yesterday and stumbled upon this link.

I am definitely going to bring this up with his oncologist, as well as his pulmonologist and the neurosurgeon.

The thing is, my husband doesn't have any specific brain metastases; rather, they are suggesting whole-brain radiation to try and prevent him from "going to meet the Big Man upstairs." But I've been reading these American forums for a few days now, seeing people talk about the effects of preventative radiation—and honestly, it's unsettling. I see stories after stories from people whose loved ones passed away shortly after receiving preventative cranial radiation or combined chest radiation (if there's even a connection there). As much as I wanted to be ready to fight for every possible treatment option, including head radiation, I'm feeling quite uncertain now. I know how forums can be—everyone's biology is unique—but these stories have really planted a seed of doubt in my mind.

ruggedfox11 said:We haven't been there ourselves, but we know they don't offer chemotherapy. As for the cost, I can only speculate, but an operation like that would run about $10,000 out there. Furthermore, they won't even glance at our test results without us showing up in person for a consultation; and as I mentioned earlier, they won't even bother examining or touching a patient if the disease isn't under control (that's what my husband's pulmonologist told us).
If you happen to have any more recent information, please feel free to share. :-)

Thanks for the response. Well, we had read that they utilize some incredible, cutting-edge chemo methods—something highly advanced and targeted specifically at the affected area. Honestly, if we got the word that they were available, we would head over there immediately.
But I wonder what they mean by the disease not being "under control." In our case, we are dealing with a recurrence of pancreatic cancer two years after the initial surgery, and there are no metastases.
As soon as I learn anything new, I will share it with everyone.
Thank you very much.

When I was over there, I actually caught a glimpse of the chemo ward 🤔

dustyscout8 said:Thanks for getting back to me... Well, we had read that they utilize some incredibly advanced chemotherapy methods—something cutting-edge and highly targeted specifically at the affected area. And honestly, if they gave us the green light, we would head up there immediately...
But I suppose all that means little if the illness isn't under control first. In our case, we're dealing with a recurrence of pancreatic cancer two years after the initial surgery. There aren't any metastases yet...
As soon as I hear anything new, I'll be sure to share it with everyone here...
Thank you so much.

I just stumbled upon this:
https://www.facebook.com/radiochirurgia.chicago/

Maybe they'll respond; I'm going to send them a message a bit later, and I'll let you know if I learn anything else.

And this was the response I received when I emailed them their medical records:

We appreciate your interest in our clinic.
We recommend scheduling a consultation; please bring all necessary documentation and have your spouse accompany you to meet with our oncologist.

An appointment can be arranged as early as today.
Contact phone: 01/4008050.

Sincerely,
Cleveland Clinic

Kate Morgan66 said:While I was there, I actually saw their chemotherapy department🤔

Nicholas Doyle91... would you mind sending me a private message with the costs?
Yeah, they likely handle chemo, but they won't touch it under any circumstances😢

ruggedfox11 said:I just stumbled upon this:
https://www.facebook.com/clevelandclinic/

They might actually respond; I plan to send them a message a bit later, and I will update everyone if I learn anything new.

And this is what they sent me when I emailed them and called:

Thank you for your interest in our clinic.
We recommend scheduling a consultation; please bring all necessary documentation and ensure your spouse accompanies you to meet with our oncologist.

Appointments can be arranged as early as today.
Contact number: 01/4008050.

Sincerely,
Cleveland Clinic

Yes, I am convinced this is just their standard template response that everyone receives, much like we did, leaving us to wait indefinitely while praying to God.😢 Thank you so much for the articles, I saw that one!!!

dustyscout8 said:Nicholas Doyle91.. would you mind sliding into my DMs and letting me know what those cost?
Yeah, they probably do chemo too, but honestly, I wouldn't touch that with a ten-foot pole if I were you.😢

Look, all I ever had done at the Cleveland Clinic was an abdominal ultrasound, so I’m really not the best person to ask when it comes to pricing for the specific stuff you guys are looking for...$133 cash only

Kate Morgan66 said:I only had an abdominal ultrasound done at their facility, so I can't really offer much insight regarding specific pricing for the procedures you're looking into...$133 paid in cash

Thanks anyway! Any bit of information is helpful.

dustyscout8 said:Thanks anyway—honestly, any bit of information helps at times like this.

So, I found this comment from them on Facebook regarding surgery for gastric cancer:

Mayo Clinic: Respectfully, Nicholas, the costs for radiosurgery procedures start at $18667 and can go much higher, as everything really depends on the specific details of the patient's case. We are hopeful that we will soon reach an agreement with Medicare to make this technology accessible to a much larger number of patients. Best regards.

Thanks a lot, I'm well aware that everything is incredibly expensive right now 😢( We'll just have to wait and see... If I dig up anything useful, I'll let you know... I am certain there are more cases out there... they seem to be increasing every single day... an epidemic 😢

dustyscout8 said:I really appreciate that—and honestly, I couldn't agree more. Everything has become incredibly expensive lately, hasn't it? It feels like every time you turn around, the cost of living just keeps climbing. 😢We'll just have to wait and see... If I manage to dig up any more information, I'll be sure to post an update here. I'm quite certain there are more cases out there—it feels like we're seeing them more frequently every single day. It really does feel like an epidemic is unfolding right before our eyes. 😢

I sent them a message.
I'm just sitting here waiting to hear back—once I get an answer, I'll be sure to post an update.

I sent over the test results the day before yesterday, and I just got the appointment date for the consultation today—they want me there in three weeks.
ruggedfox11, does that mean you should be hearing back within a few days too, assuming you already reached out about scheduling?
My God... the pricing. Their response regarding the cost was nothing more than: "Dear XXXX, the cost for pancreatic tumor Radiochirurgia is $29075. Best regards."

So, I just stumbled across this... has anyone here actually heard anything about these mushrooms and whether they actually work?

dustyscout8 said:I sent over the test results the day before yesterday—just got a confirmation today for a consultation appointment in about three weeks... ruggedfox11, does that mean you guys usually hear back within a few days if you’ve messaged them about pricing?

Oh my God... the price. Their response regarding the cost was just... "Mayo Clinic. Hello XXXX, the cost for pancreatic tumor radiochirurgia is $29075. Best regards."

I didn't actually send an inquiry about booking yet. Since they hadn't replied to the email I sent two months ago, I decided to message them on Facebook today with the medical reports attached—just asking for a rough estimate of what removal would cost. Honestly, I'm just looking for information at this stage; my doctor expects the situation to progress quite a bit. His main concern is that the tumor is located on the bronchi rather than the lungs themselves, and he's worried nobody will want to touch it. So, I really need a Plan B with them—and I need to know roughly how much money we're going to need to set aside.

ruggedfox11 said:I haven't sent the order message yet. Since they didn't bother replying to the email I sent two months ago, I decided to message them on Facebook today with the lab results attached, asking if they could give me a ballpark figure for the removal. Honestly, I'm just doing this for information; my doctor expects the tumor to retreat entirely on its own. His main concern is that the tumor is located on the bronchus rather than the lung tissue itself, and he's hesitant to touch it, so I want to have a Plan B ready with them and know roughly how much money we’ll need to set aside.

I understand completely... You absolutely need a Plan B. I really hope they provide at least an estimated price. Apparently, they refuse to give specific prognoses or cost breakdowns until a full workup is completed at their facility? It is frankly unprofessional that they ignored an email for that long; that isn't how a reputable clinic operates. Perhaps you should try calling them directly if you don't hear back through social media?
I am keeping my fingers crossed for you... Is your husband experiencing any pain? If you don't mind me asking, how long has it been since the initial diagnosis?

dustyscout8 said:I understand... You really have to have a Plan B ready. I’m hoping they’ll at least give you a ballpark figure. Apparently, they don't want to provide specific prognoses or pricing until they've completed their full assessment? It’s quite strange that they haven't replied to the email—honestly, it feels a bit unprofessional on their part. Perhaps it might be worth giving them a call if you still don't hear back?
I'm keeping my fingers crossed for you... Is your husband experiencing any pain right now? And if you don't mind me asking, how long has it been since the initial diagnosis?

They only responded via email with the exact information I copied earlier today—even though I had already replied to reiterate my questions, they just haven't given me anything else.

It feels a bit silly and unprofessional to me—I mean, surely they can provide a rough estimate? But hopefully, they will get back to me eventually. In the worst-case scenario, I'll just pick up the phone and call them.

Of course you should ask! :-)
He’s doing wonderful right now. It’s been just over three months since the diagnosis, and just under four months since he finished his hospital stay and those four rounds of chemo. He isn't in any pain—actually, he wasn't even experiencing "pain" per se, more like this intense choking sensation that made it impossible for him to eat; the tumor was pressing against both his bronchi and his esophagus.

He's definitely regressing—in a good way, I mean. He actually had a CT scan today, so we'll just have to wait a little while to see exactly how much things have receded.