Support resources for families dealing with cancer and other serious illnesses

Kimberly Wright said:@ Emily Edwards19

Look, I'll just say this—given the absolute nightmare your friend is going through right now, she’s lucky to have such a solid friend by her side—you 🙂
just stay there for her, even if you're feeling terrified about everything.
I am so incredibly sorry about what she's facing. 😢

Thank you!
I honestly don't know what else to say without sounding like a broken record...😢
I feel terrible too... it still hasn't quite sunk in... the fact that this is actually happening TO HER...

Kate Brooks2 said:Hang in there, Emily Edwards19—just try to be there for your friend. I honestly think it’ll mean the world to her. It really warms my heart to know people like you actually exist out there. Best,

🙂 thanks....

Emily Edwards19 said:Regarding the bolded part—maybe I misspoke, but she was at the hospital in Chicago seeing her primary doctor and an oncologist. They just handed her the meds and sent her home...🤷

She isn't even on any kind of treatment plan... damn... I guess we're all just waiting on a miracle or something!

The delay in getting her care is the real failure here.

Emily Edwards19 said:Thanks!
I honestly don't know what else to say without repeating myself...😢
And I feel terrible... I still can't quite wrap my head around it... the idea that this is happening to HER specifically...

Unfortunately, she isn't the first, last, or only person to be dealt a hand like this.
In America, about 1.9 million people are diagnosed with cancer every year. One in three Americans will face some form of malignancy in their lifetime. It’s not some rare anomaly; it’s just that people don't talk about it. There's this cultural tendency to treat a cancer diagnosis like a shameful secret, so people ignore it rather than fighting it. And because it's ignored, those who actually fall ill have to fight the disease and a broken healthcare system at the same time.

Angela Wright said:Tim missed the bigger picture.

Unfortunately, she isn't the first, last, or even the only one dealing with this kind of mess.
In the US, about 1.9 million people are diagnosed with cancer every single year. One in three Americans will face some form of malignancy at some point in their lives. It’s not some rare anomaly; it just doesn't get talked about because our culture treats a cancer diagnosis like a dirty little secret. People think it's better to look away than to actually fight it. And because everyone stays silent, those who actually get sick have to battle both the disease and a broken healthcare system at the same time.

Thanks for sharing this. We really need to keep hitting people with the hard facts.
But how do you actually fix the system? There aren't enough doctors, too many patients, outdated equipment, zero funding, endless bureaucracy, and zero coordination between hospitals, specialists, and primary care physicians...

Angela Wright said:Sadly, she isn't the first, last, or even the only one dealing with this kind of mess.
In the US, we see about 26,000 people diagnosed with cancer every year—well, actually, those numbers are much higher nationwide, but you get my point. Roughly one in three Americans will face some form of cancer in their lifetime. It’s not some rare, freak occurrence; it happens all the time. But nobody wants to talk about it—honestly, it's just part of the culture here. People act like having cancer is some kind of social taboo or something to be ashamed of, so they just sweep it under the rug. They think ignoring it makes it go away, but instead, it just leaves people fighting two battles at once: one against the disease itself and another against a broken, bureaucratic healthcare system that feels like it was designed to make things harder.

Reading this is just devastating.....😢 but I have a feeling it's the reality for way too many people... unfortunately.

I’ve got some fresh updates to share with everyone, and honestly, things are looking incredibly bright; our patient handled this second round of chemotherapy exceptionally well. After five days of treatment, they are being discharged from the hospital tomorrow. Unlike that first cycle, there was absolutely no loss of appetite and none of the pain we dealt with before. They feel fantastic and have been eating both heartily and healthily throughout the entire process. There was a brief moment of nausea yesterday, but it passed quickly and didn't cause any real trouble. Mentally, they are doing wonderful too—constantly laughing and keeping the mood light. If we can just maintain this momentum and see the same positive results moving forward, we'll be in great shape. Sending my best to all of you.

Emily Edwards19 said:This is absolutely gut-wrenching to read...😢 And I honestly believe that’s the case... unfortunately!

Unfortunately, the numbers don't lie in this situation. 😢

Did you end up stopping by your friend's place?

swiftgardener said:Thanks for this. People need to be constantly bombarded with data like this.
How are we even supposed to fix this broken system? We’ve got a massive shortage of doctors, an overwhelming surge of patients, outdated equipment that belongs in a museum, zero funding, and enough bureaucracy to drown a saint. On top of all that, the whole thing is completely fragmented—there's absolutely no coordination between hospitals, specialists, and primary care physicians. It's a mess.

People need to drive systemic change through grassroots civic engagement. Most folks just sit around their living rooms complaining about how things ought to be, but they never actually step up to do anything about it.

www.zanovidan.hr Get to work.

Kate Brooks2 said:Alright, I’ve got some updates for everyone—our patient actually handled the second round of chemo incredibly well. He’s getting discharged from the hospital tomorrow after five days of treatment. Honestly, he didn't lose his appetite at all, and none of those pains from the first cycle showed up this time. He’s feeling great, too; he was eating really well and staying healthy while on the meds. He mentioned having a little nausea yesterday, but it passed pretty quick. Mentally, he’s doing awesome—just laughing and joking around constantly. If things keep going this way and we see good results, it'll be a miracle. Sending love to you all.

That's amazing!!! So happy for you guys!!!!

Angela Wright said:Unfortunately, when it comes to this stuff, the numbers don't lie. It’s just one of those harsh realities you have to face. 😢

Did you end up making it over to your friend's place?

www.zanovidan.hr Get to work.

I was just over at a friend's place... and honestly, she’s doing pretty rough. This headache just won't quit—it's been going on for like 7 or 8 days straight now. She's popping a mountain of pills, but nothing seems to touch it. Most of the time she's just lying there with her eyes squeezed shut because that's the only way she can get any relief, but she keeps saying "thank God" and acting like everything is totally fine. We spent a good chunk of time just talking, though. She's having to force down food—someone actually has to feed her at this point—and she can't even make it to the bathroom on her own. It's tough to watch.
I'm heading over to see her tomorrow too...

So, this Thursday I've got blood work scheduled, and then Friday is the big day—the brain MRI...
Her oncologist was actually mentioning that they might try to tackle it using the Gamma Knife... so now she’s holding onto a little bit of hope.
Basically, she just wants this headache to quit it already—that’s her number one priority right now. She’s saying there's just no way she can hang on like this until we reach the frontier...
I'm really hoping they can actually get something done for her this week while she's out in Washington, D.C.!🙂

Emily Edwards19 said:I was over at a friend's place earlier, and honestly, she’s in a really rough spot. This headache just won't quit—it's been constant for seven or eight days now. She’s going through a mountain of medication, but nothing seems to be touching the pain. She spends most of her time lying down, mostly keeping her eyes squeezed shut because that’s the only way to get any relief. Despite all that, she keeps saying "thank God" and stays positive, so we spent quite a bit of time just talking. It’s tough to watch, though; she has to force herself to eat, someone basically has to feed her, and she can't even make it to the bathroom on her own.
I’ll be heading over to see her tomorrow, too.

So, I've got blood work scheduled for this Thursday, and then the brain MRI is happening on Friday.
Her oncologist mentioned that they might try using Gamma Knife to deal with the issue in her brain... so now she’s holding onto a bit of hope.
Basically, all she wants is for that headache to stop. That's her absolute priority right now... she says if this doesn't let up, she isn't going to make it to the finish line.
I’m really hoping they can pull off something positive for her during this week in Washington, D.C.!🙂

Forgive my choice of words, but that oncologist is an absolute powerhouse!🙂
Your friend’s headache isn't just a random pain; it's happening because she has edema—basically, a buildup of cerebrospinal fluid that's putting direct pressure on her brain, causing that intracranial pressure. To get that pressure down and actually kill the pain, the only way out is through therapy using Mannitol and a corticosteroid like Dexamethasone. Even an oncologist knows that all too well. Let’s just hope things don't take a turn for the worse before Friday, because if she gets too unstable for an MRI, we're stuck. Honestly, it’s a real possibility. When my mom started dealing with those headaches, they didn't let up for three straight weeks. Then, out of nowhere, one side of her mouth just dropped—looking exactly like a stroke—and she started dragging her leg whenever she tried to walk.
Normally, you handle situations like this by jumping in the car and rushing someone straight to the ER at a major neurological center. That’s where they can run a CT scan and even an MRI immediately to figure out what's going on. And just get rid of that pain once and for all! Tell her straight: she has the power to end this pain right now if she actually decides to take action.
And for heaven's sake, why are we even talking about the Gamma Knife yet? She doesn't even know if there's a target to hit! If she does find one, every single day counts. Listen, we’re talking about a difference of just a few millimeters here—but in the world of Gamma Knife, those tiny fractions change everything when it comes to how effectively they can actually fix the problem.

Angela Wright said:Sorry if this sounds blunt, but that oncologist is totally out of line!🙂
Your friend’s head is hurting because she has edema—basically a buildup of fluid pressing against her brain—which causes that intracranial pressure.To bring that pressure down and actually kill the pain, the only way is therapy with Mannitol and a corticosteroid Dexamethasone, and any decent oncologist should know that. Let's just hope things don't get so bad by Friday that she can't even make it to the MRI, which, honestly, is a real possibility. When my mom started getting those headaches, they lasted for three weeks straight without a break, and then suddenly her mouth started drooping like she was having a stroke and she began dragging her leg when she walked.
Usually, you handle stuff like this by just jumping in a car and rushing to the ER at a hospital like the Mayo Clinic to get an immediate CT or even an MRI so the pain gets handled right away! Just explain to her that she can get relief immediately if she chooses to take action.
And all this talk about Gamma Knife... good grief, she doesn't even know if there's a target yet! And if there is, every single day counts, because even a difference of a few millimeters changes everything when it comes to what Gamma Knife can actually do!

I seriously cannot believe this😱
they could have fixed her pain IMMEDIATELY that day when she headed straight from the coast to Washington, D.C., but instead they just sent her home with some headache pills??!!
I'm going to print this out and show it to her mom... I'm heading over to see her again today... I really hope the headache hasn't gotten even worse!!
thank you so much for all this info, seriously, thank you...🙏

Here I go again..
Emily Edwards19, I am so incredibly sorry about your friend. It honestly makes me furious when doctors make mistakes like that. 😢
Lily, I’m so relieved to hear everything is under control and that you guys are making progress. 🙂

You’re all in my thoughts and prayers, everyone 🙂

I really need some advice here. We went through surgery on June 20th, 2011—right side frontal lobe. The final diagnosis came back as grade 2 oligoastrocytoma and grade 3 oligodendroglioma. 😢 We finally started radiation on August 29th, but the MR spectroscopy from eight months ago shows there’s still something there, specifically in the left temporal lobe and the corpus callosum, measuring about 5 mm.
My question is, once the radiation is done, should we be looking to schedule a Gamma Knife procedure with Professor Henry over at the Mayo Clinic after repeating the MR spectroscopy? Or does he need to be cleared by a neurosurgeon first? Honestly, we’ve just been bouncing between hospitals constantly. We live in a suburban neighborhood, but since there isn't an oncology department nearby, we're currently stuck in Miami for the radiation. It's my younger brother we're dealing with, he's only 30.
Also, what’s the typical protocol for getting chemo started? Is it usually standard stuff, or do they send samples out to specialized labs?
(They don't handle it here in Miami, which is a huge headache because while Miami follows a standard drug protocol, the Mayo Clinic is mentioning Temozolomide...
Please, if anyone can help me out... I’m reaching a breaking point because I don't trust anyone anymore. Between all this endless running around with a sick guy 😢 and the fact that radiation didn't even start until day 73—which is insane, since it usually starts within a month—I just want to get those samples sent off to a major institute somewhere else... if anyone knows how to make that happen, please...
-any way you can help... 😢(

Kate James38 said:I need some help here. We just went through surgery on June 20th—a resection of the right frontal lobe. The final diagnosis came back as a Grade 2 oligoastrocytoma and a Grade 3 oligodendroglioma. 😢 We went in for the radiation session on August 29th. However, the latest MRI with spectroscopy from eight months ago shows that there’s still some residue present—specifically in the left temporal lobe and the corpus callosum—with measurements reaching about 0.5 mm.
Do I need to schedule another MRI with spectroscopy once the radiation is finished? And if so, should I go straight back to Henry at the Mayo Clinic for the Gamma Knife procedure, or does he need to be cleared by a different neurosurgeon first? We’ve been bouncing between hospitals lately—we're coming from a suburban neighborhood where there isn't an oncology department, and now we're down in Miami for the radiation. It’s my younger brother we're fighting for; he just finished 30g.
I have another question: what’s the standard procedure for getting chemotherapy? Is it just the usual routine, or do they actually send out samples for external testing?
They don't handle things that way in Miami, and honestly, it’s creating a bit of a headache for me. Miami follows a very specific, standard protocol when it comes to prescribing medication, yet the folks over at the Mayo Clinic are already bringing up Temozolomide.
I’m asking for some help here... Honestly, I don't trust much of what they're telling us anymore, especially after all these endless walks we've been taking with my guy while he's so sick. 😢 It’s already been 73 days since radiation therapy actually kicked off—which is way beyond the standard one-month window—and honestly, I just want to get these samples sent off to an outside institute. If anyone out there knows how to make that happen or can point me in the right direction, please let me know. I really need some help here.
In any way possible... 😢(

Henry is a neurosurgeon, and per standard protocol, you’ll need a follow-up MRI with contrast once the radiation is finished. If that scan shows something that needs to be taken out via Gamma Knife, I’d say go for it—don't hesitate. You can also look into CyberKnife out there; it's used for those larger tumors that the Gamma Knife just isn't equipped to handle.
The medical protocols used in Miami are identical to those mandated by Medicare. If doctors in Washington, D.C. recommend Temozolomide as the standard treatment, you can bet the teams in Miami are following that exact same playbook. These tumors tend to be pretty sensitive to radiation, so there’s a real possibility that once the radiation is finished, the lesions won't even show up on scans anymore. Ultimately, the oncologist who referred the patient for radiation is the one running the show—they’re the ones deciding exactly how the rest of the treatment is going to go.
Because determining the exact grade of a brain tumor is notoriously difficult—and since these cases are so rare that even a PhD finding can be misread—I strongly suggest you take action. Go to the pathology department at the hospital where the boy had his surgery and request the tissue samples (the actual microscope slides in the box). Send those over to a world-class center of excellence for a second opinion on the PhD findings. It’s my best advice. Dr. Sidney Farber Check out this institute in the States. You can actually go right onto their website, submit an inquiry, and get a quote for the exact service you need—which isn't even that pricey, usually around $500 depending on the specifics. You just ship the samples via FedEx, and once they finish the analysis, they send everything back to you along with the official report. My advice? Don't just ask them to read the PhD findings. Go a step further and ask for their professional opinion on the treatment plan and if there are any ongoing clinical trials the kid could join. They are incredibly thorough.

thanks for getting back to me so fast...
So, here's the deal. After the MRI and SPECT scan on August 11th, we had the consultation. Dr. Miller said it isn't operable, and Dr. Keros backed him up on that.
Neither of them even brought up Gamma Knife; they just recommended oncology treatment—specifically immediate radiation.
We started that process down in Miami.
There’s zero coordination between Miami and Washington, D.C., if you know what I mean...😢 I tried talking sense into them, but nobody's listening...
Between the doctors here in Miami, the ones in Seattle, and the MD Anderson Cancer Center in D.C., they’re all saying no to Temozolomide—apparently, it's only used for glioblastoma, which is the only thing Medicare covers.
We couldn't go with the Mayo Clinic because of the scheduling; they could get us in for radiation much faster here in Miami... and when you're in this position, every single minute counts.
- Regarding the PhD findings, I actually have four (two from a Suburban neighborhood clinic, one from Mayo Clinic, and one from the center in Vienna—which was incredibly precise with the diagnosis).
- However, I didn't realize at the time that I could actually influence the treatment plan by consulting with them directly. (Everything I'm saying is just based on what I've gathered; I'm obviously not a doctor, otherwise I might have known all this sooner 😢 but yeah... everything just feels like it's moving too slow anyway)
- Is what I have enough for the folks in Vienna, or should I try using the info you provided? It seems really helpful!
- I know that the specialist out on the Frontier sends samples abroad from the Mayo Clinic... he's the only one with official ties over in Europe... but since we aren't patients at Mayo, those doors are slammed shut right now.
- And if things are being sent overseas, my experience tells me the hospital has to handle the shipping (I'll cover the costs), otherwise, it won't clear customs. Does anyone know how that works?
- Also, how on earth do you book a consultation with Dr. Henry? I assume the waiting list is massive.
- Same goes for the MRI/SPECT scans; if we don't go private to the Neighborhood, our next insurance approval isn't until February 2012 :P
/ Of course, I'm maxing out credit cards just to make sure I don't lose my brother.

Reading all these stories about medical negligence... honestly, it makes me sick. I can't stop thinking about when I showed up at the ER with a headache so bad I was vomiting for five days straight—all because of a massive tumor and even worse edema—and they wouldn't even run a CT scan just because of the cost. 🙂
I suppose I just feel for anyone going through that kind of mess.. 😢

So, I saw my oncologist on Tuesday with my bloodwork. Everything looks fine, I guess, and I start my first of six rounds of Temozolomide monotherapy this Saturday. 👍 Since this treatment is twice as intense as the radiation therapy I had, I expect things to get much worse. I won't be working during those days; I'll take medical leave just to have a chance to recover.. 😉

Anyway, ever since I stopped the Dexamethasone, I've been sleeping like a baby.. 😍 Actually, I could probably fall asleep right now just leaning on my chin—trying to make up for that month where sleep wasn't an option..

I have two pieces of advice for everyone here—stay positive at all times and believe in your recovery. And if you suspect your doctor isn't doing everything possible for you—find someone who will. This is my third oncologist, and I've already sought out four different pathology opinions..

Sorry, fadedtrucker5, but what’s your actual diagnosis? I'm asking since you mentioned being on Temozolomide, and are you currently out in Washington, D.C.?
We’ve already bounced between three different oncologists, and I actually have some intel on a fourth one too...
I’m really glad to hear things are moving along with the Temozolomide 🙂
But honestly, I don't even know who to trust anymore... or where to turn... we just don't have the luxury of making any more wrong moves...

Kate James38, I'm traveling right now so I'm just tapping away on my phone. As soon as I have my laptop in front of me, I'll get back to you—either later tonight or first thing tomorrow morning.

Angela Wright said:Kate James38, I’m traveling right now so I’m just tapping away on my phone. As soon as I can get to a laptop, I’ll give you a proper answer, either later tonight or tomorrow morning.

Thanks... hang in there everyone... ladies, guys... but seriously, I feel like I've hit a brick wall... and then today they tell me they can't even ship samples through Washington, D.C. 😢
I mean, honestly... it's pathetic. On paper, everything sounds like a masterpiece, but in reality, it's a total joke... like watching the Olympics😢

I'd like to join this conversation too.

My dad was diagnosed with lung cancer back in September 2009. They surgically removed the lower lobe of his left lung, followed by chemo. He stayed in remission until last September, when a bronchoscopy revealed a tiny 1.5 mm nodule/metastasis in his left bronchus.
He finished another round of chemo and seemed fine; his tests were looking good.
But about two months ago, he started vomiting after every meal. It’s not food he can't keep down, but rather mucus/phlegm, and he's losing weight incredibly fast.

A PET CT scan was done, and the results point to a growth in his esophagus that has almost completely blocked it.

He’s taking all the records to his oncologist this Monday, but I am honestly feeling desperate.
We are going through this whole nightmare all over again. He stays optimistic throughout his illness, but for me, my whole world just collapses every single time.

I came here because I see how much you all support one another, and right now, that’s exactly what I need.

If I may be selfish for a moment, my biggest struggle is that I just gave birth two months ago. I can see how much my mental state is affecting my baby, yet I feel powerless to fix it.

I'll update you once we hear what the oncologist suggests.