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

The fever isn't a good sign...

I scheduled an appointment for my mother this Wednesday with my former oncologist, and I’ll be heading there with her.
Actually, let me tell you how I went about booking it.
When I first started searching for an oncologist, I stumbled upon a site called Healthline. I really liked how functional it was. You just type in the specialist you need and the city, and it spits out all the details. That's how I found my old oncologist and decided to sign my mom up with him. The process was seamless—I even got an email notification saying the request was received and they'd let me know once the doctor confirmed the slot.

The doctor only works two days a week. On Healthline, there were three available slots shown. I was as happy as a kid in a candy store thinking I had everything sorted so easily. I figured once we got the confirmation, Mom and I would just head straight to Washington, D.C.

But then, I started digging for more info and ended up on the website for the medical center where my former oncologist practices. It said he's there twice a week, but the info contradicted what was listed on Healthline. I checked the order again—it said morning. Then I looked at the center's own pages, and it says the doctor works Wednesday afternoons. So, I sent an email to Healthline asking for clarification... still waiting to hear back.
I called the center, and since I could barely hear anything over the noise, my colleague at work actually ended up talking to the woman who had booked my mom for Wednesday afternoon.

You really need to book directly. That's the only way to be certain.

I'm honestly glad I caught this. If I hadn't kept poking around, Mom and I would have driven all the way to Washington, D.C. only to find out nothing was actually happening. But oh well, everything works out in the end.

Hey everyone, I honestly can't believe I'm actually posting here—this is totally my first time on the forum. I just wanted to reach out because I lost my mom four months ago. She passed away from a brain aneurysm, and since it was such a major vessel, there was really nothing the doctors could do. At first, I just went into total denial; it didn't even feel real that this was happening to me and my family. I’m struggling so much with the reality that she’s gone, and honestly, it feels like things are getting harder as more time passes. How did you guys manage to get through losing someone so close to you?

silenttiger52 said:Hey everyone, I honestly can’t believe I’m posting here—this is actually my first time ever using this forum. I wanted to reach out because I lost my mom four months ago. She passed away from a ruptured brain aneurysm; there was just nothing anyone could do since it hit the main artery responsible for everything in the body. When it happened, I went straight into total denial. It didn't feel real, like it wasn't actually happening to me or my family. Now, I don't know how I'm going to handle her being gone forever. It feels like the more time passes, the harder it gets. Please, tell me—how did you all cope with losing someone close to you?

I am so incredibly sorry for your loss. 😢

If you head over to the Psychologica PDF section, there’s a specific thread dedicated to dealing with grief, including a separate one specifically for those who have lost their mothers.

It just doesn't feel right to discuss the weight of grief and how to manage it here, in a space where people are fighting for their own lives or watching their loved ones fight to survive.

Michelle Kelly4 said:The fever isn't a good sign.

As it turns out, it was a "false alarm." It wasn't pneumonia; he just ran a fever because they had to move his venous catheter from the right side to the left.
His temperature dropped right away this afternoon, so he's doing okay for now. They are still keeping him on an IV with high-calorie nutrition to help him regain strength; if we relied solely on what he could eat by mouth, it would take far too long to see any progress.
Honestly, I’m starting to dread celebrating even the small wins. Every single time it feels like we take one step forward and two steps back.

Honestly, I think that would be pretty great, believe me...

Just wanted to share an update...

I finally managed to push the doctor to discuss other treatment options. I just couldn't stomach the idea of my dad going home just to "manage" things with nothing but pills... there is always another way, always more options. For instance, CYBERKNIFE technology is available in Germany and I think a few other places too—I only remember Germany specifically, but you can easily look that up on Google. What stuck in my mind, though, was that they don't just proactively offer this to patients here; I have no clue why, but it's not the standard pitch. When I went in asking about radiofrequency and microwave ablation in Italy, the specialist explained everything clearly and actually suggested the CyberKnife. The most important part? We just need to get five CT scans done (he’ll suggest how to get the referrals from a primary care physician without too much of a fight), have them translated into English, and then he sends inquiries directly to those hospitals. If the results show you qualify for the therapy and you're ready to go, then great...
From what I've gathered, I assume you can also email your own records yourself just to gather more information...

To be honest, I have no idea what the cost looks like or if Medicare covers any of it, but sending out these inquiries is free and doesn't commit you to anything at all...

If anyone happens to see this and has info on this method—or better yet, actual experience with it—please, let me know...

So, after spending a few hours digging into this, here’s what I’ve gathered: we're talking about a robot—essentially a laser scalpel—that can pinpoint tumors within the body and blast them with radiation without touching any surrounding organs. It hits the tumor and nothing else.

Now, if I've managed to wrap my head around this correctly (and maybe I haven't), the idea is that it essentially freezes the tumor in place for a while—say, five to ten years. Am I on the right track? And in certain instances, it actually shrinks them down...

I just realized this isn't exactly groundbreaking news either, and apparently, people have already been debating this on the forum...

But for us, it still feels like 🙂

cosmiclynx14 said:So, from what I’ve managed to dig up over the last few hours, we're looking at a robot—basically a laser knife—that hunts down tumors in the body and blasts them with radiation without touching the surrounding organs. It just hits the tumor and nothing else.

Now, if I'm understanding this correctly (and maybe I'm missing something), it essentially freezes the tumor in place for a while—say, five to ten years? Am I on the right track? And in some instances, it actually shrinks them too.

I just realized this isn't exactly groundbreaking news either, and people have already been debating it here on the forum.

But for us, it definitely is.🙂

Little Ena Sarac went to Germany for CyberKnife treatment for a brain tumor.
From what I understand, you can only do this if there's a single tumor, properly positioned, and measuring no more than about 4 cm, if memory serves. That’s specifically for brain tumors; I have no clue how it works for other types of tumors in the body.

I was actually talking about proton beam therapy performed in Munich at the technical university. The late president of the Sav za on i dosta association underwent it and had a pretty positive reaction, recommending it. http://www.sciencedaily.com/releases...0610103740.htm
I would definitely look further into this.

Yeah, there’s all sorts of info floating around. They mentioned it needs to be under 4 cm, but I can't quite wrap my head around if that means just one single spot or something else. Usually, in our neck of the woods, they'd just go in surgically... but whatever. Once she finishes her course of Xelode, she still has three cycles left. Then it's PET CT, and after that, I'll grill the doctor about proton therapy.
The doctor himself said there are several options on the table, so we'll just have to wait and see...

Honestly, with all this chaos and euphoria, it didn't even cross my mind to think about the costs involved. Do you have any idea—even just a rough ballpark—of what kind of numbers we're looking at here?

Is there any kind of coverage available? Like, if our doctor recommends a specific route, is there any chance we could get something out of Medicare, or is all this treatment stuff just strictly out-of-pocket?

edit: Angela Wright, thank you so much for being so incredibly patient with everything... they say learning patience is one of life's biggest lessons, I guess.

Regarding CyberKnife, I’ve already shared the data about the brain tumor with you—pay attention! There is a massive distinction here. Brain tumors, specifically gliomas, are notorious for behaving aggressively if you try to touch them with a scalpel; they practically go berserk and expand. CyberKnife and Gamma Knife work by cauterizing the vessels that feed them and irradiating them so they eventually wither away and get resorbed. Quite often, these tumors sit in spots in the brain that are simply unreachable by surgery because you'd wreck vital centers, so this approach is an incredibly effective solution.
As for the procedure itself and Medicare coverage, you have to secure opinions from three specialist doctors who must certify that this is the sole viable treatment option and that it isn't available locally. Once that's established, it goes before a Medicare review board to get the green light. That process can drag on, so most people end up paying all the upfront costs themselves and then wait for Medicare to reimburse them based on their receipts later.
How much something like this actually costs? Honestly, I have no clue. I won't even attempt to guess, but it certainly isn't cheap—especially when you're talking about proton therapy. Your best bet is to contact the medical institutions directly and ask.

edit: please don't thank me. I've said it before: helping with this carries a deeper significance for me; it's actually a way for me to process my own trauma.

That’s a pretty optimistic take.

Hi everyone, I'm not quite sure where else to look for answers, so I figured I'd try my luck here. I was wondering, can bone lesions seen on a PET-CT actually mean something other than metastasis?

Linda Ramirez30 said:Hi everyone, I wasn't sure where else to look for answers, so I figured I'd try here. Is it possible for bone lesions shown on a PET-CT scan to mean something other than metastasis?

Sure they can. For instance, you might be seeing old fracture sites, heavy impact injuries, or similar things. Generally speaking, if you want the most reliable look at what's happening in the bones, a bone scan is the gold standard.

Angela Wright said:It’s possible. For instance, you can see sites of former fractures or stronger impact areas. Generally speaking, scintigraphy is the most competent scan when looking at bone issues.

Thanks so much 🙂 my mom just finished radiation therapy on her pelvic area, and now she's dealing with bone pain. She also had osteoporosis before this started. Is it possible these lesions were caused by the treatment?

Linda Ramirez30 said:Thanks a lot. 🙂 Is it possible that the radiation therapy her pelvic area underwent caused these bone pains, especially considering she was already dealing with osteoporosis? Could the lesions actually be a result of the treatment itself?

It’s possible this is stemming from osteoporosis, but you absolutely need to get that checked out!

Angela Wright said:It could be due to osteoporosis, but you definitely need to get that checked out!

She will. Her scintigraphy is scheduled for early August. Thanks again 🙂

Angela Wright, my dad went over to Cleveland, and unfortunately, it’s still just that same old da Vinci surgical robot. Nothing new to report there, except they’re actually starting to use it for colon procedures now, whereas before it was mostly just prostate stuff..

So yeah, just thought I'd mention it, since there's zero new info otherwise.

cosmiclynx14 said:Angela Wright, my dad actually went over to the clinic, and unfortunately, it’s still just that same da Vinci surgical robot. There isn't anything groundbreaking happening here; they're just starting to use it for colon procedures now, whereas before they were only using it for prostate stuff..

Just thought I'd share, since there's zero new info out there.

😢
Anyway, keep pushing forward. Don't back down.

My father-in-law is still struggling with that damn muscle that's completely blocking his digestion.
He’s going to try to "blow past" it today and through the weekend, and if that doesn't work, he’s promised he’ll undergo surgery on Monday to finally put this matter to rest.
Fortunately, he’s a pretty tough guy and handles all of this with a certain stoicism, though he does have those moments where his mental state dips—thankfully, those phases pass.
I’ve reached a point where I don't even dare get my hopes up anymore, because usually, once I start feeling optimistic, everything tends to go sideways.