Resources and support for families dealing with cancer and serious illness

casualpanther1 said:Hey everyone,
...I can tell you right now, I'm not scared—actually, it's the exact opposite. I want this thing done as soon as possible so I can be in peak shape by the time my wife needs me to be much more than she does right now. Look, there’s always a risk when you’re talking about brain surgery, obviously, but I truly believe I won't end up with any negative side effects. And honestly? If there are going to be consequences anyway, I'd rather deal with the fallout from the procedure than live with the state I'm in without it.

I'm really sorry things are heading this way.
Hang in there and check back in whenever you can. Good luck!!!

New Year's Day brought us some incredible news about a new addition to our family! :-) Even though we had been wanting and planning for this for a while, making the decision felt quite heavy given everything going on right now, but we went for it. The whole family is absolutely thrilled and we have their full support behind us. As far as I'm concerned, my only real wish for the coming year is simply good health—for him, for me, and for the baby.

Let's just stay brave through 2008 and I wish everyone nothing but positive energy!

First off, huge congratulations on the new baby! Wishing you guys all the best!
On another note, things are just getting worse for my dad every single day. He's in massive pain, and the doctor is pushing this heavy-duty pain management plan—four times a day, 20 drops of Methadone per dose! Has anyone here actually dealt with this? I mean, I know what it is, but I don't personally know anyone who has used Methadone like this.

Greetings to everyone, I am a newcomer here. 🙂 I wanted to take a moment to wish you all a happy holiday season and extend my best wishes for the upcoming 2008; may it bring plenty of health and happiness to you and your families. Finally, if I may, I was wondering if anyone might happen to have any experience regarding a cerebral aneurysm?

Timothy Perez86 said:Hey everyone, I'm new to this group. 🙂 Just wanted to wish you all a happy holiday season and hope 2008 brings nothing but health and happiness to you and your families. To wrap things up, I was wondering if anyone here has any experience dealing with a brain aneurysm?

Welcome, John!
You can find info regarding cerebral aneurysms here.
If you catch it early, modern medicine handles it incredibly well. Surgical techniques have come such a long way that the risk of neurological side effects from "touching" the brain has been reduced to a bare minimum.

A little bit behind on things...

I want to wish everyone a very Happy New Year! Above all else, I hope you all enjoy nothing but great health!!

Angela Wright said:It’s been a while since we last caught up. Amy Hayes28Hey honey, I hope everything is going okay with you. Listen, please reach out and let me know what’s happening with that new brain tumor medication they were offering your dad.

What am I even supposed to say? Honestly, there’s nothing. Absolutely nothing. I’m sitting here staring at the screen, completely at a loss for words. I just don't know what to write.
We just couldn't agree to that medication. First off, Dad refused to shut up about it—he’s stubborn like that about everything unless it falls under "traditional medicine." On top of that, we simply wouldn't have been able to keep up with the costs. Honestly, nobody even dared to argue with him, because when it comes to health, people always say there's always a way to find the money. Maybe if things were different, they would have at least tried it for a couple of weeks while they had the funds, but the old man rejects absolutely anything that isn't standard, textbook medicine.
That’s exactly right. They just had to cut his radiation treatment short because his blood counts are a mess—by the way, his blood sugar hit 30. On top of all that, he’s dealing with a massive ear infection that nobody has even bothered to address yet.🙄
I am absolutely sick of everything right now. Honestly, the worst part is that my elderly father refuses to ask those "God-complex" doctors a single question because he’s terrified of offending them. He thinks he can't just demand answers like a normal person! It's infuriating. Just stop being such a pushover.👎
Right before Christmas, he was supposed to have a change in his radiation protocol. The doctor specifically noted that we should start focusing on radiation for the pelvic area, but since then, we haven't been able to find another doctor to sign off on the paperwork. So, the radiation plan remains exactly the same as it was. Honestly, at this point, it isn't even necessary anymore.
For those first ten days, they were getting irradiated for about 10 minutes at a time. It was all pretty much guesswork because there wasn't even a doctor on hand to determine the exact dosage or what exactly was being administered, so they just went by approximation. You probably won't believe me, but I'm telling you the truth—and honestly, that's just the tip of the iceberg compared to the even worse stuff I could tell you about. Total flop.
I asked the doctor for a definitive diagnosis, and he just gives me this arrogant attitude, snapping back with, "Why do you even need to know? You didn't go to medical school, so what does any of this mean to you?"
In the end, I started rambling about something that practically makes no sense. I was just scribbling it all down when I realized someone had gone and smeared my marker over the whole thing.🙄 Anyway, just something completely unrelated to what we were talking about.😢
We decided to take him to a private doctor this Monday without letting the hospital know. We just need someone to finally clear out that infection, and we want to get an MRI done so we can see if there’s actually any change at all.
So basically, they just sleep through everything, forgetting it all anyway...
One day, things are going to get better.😢

Amy Hayes28 said:A little bit behind schedule...

Happy New Year to everyone! First and foremost, I'm wishing you all nothing but great health!!

What am I even supposed to say? Nothing, really. Absolutely nothing. I honestly don't know where to start or what there is left to write.
We just couldn't agree to that medication. First off, my dad refuses to shut up about anything that isn't "traditional" medicine, and honestly, they wouldn't have been able to swing the cost anyway. Besides, nobody had the nerve to point out that there’s always a way to find the money when it comes to health. Maybe if we had reached a breaking point, they would've finally given it a shot for a few weeks while they scraped the funds together, but the old man rejects anything that doesn't fall under the umbrella of classic medicine.
That’s exactly why they had to halt his radiation treatment—his blood work is a mess right now (by the way, his blood sugar hit 30). On top of that, he’s dealing with a massive ear infection that nobody has even bothered to treat yet.🙄
I’m absolutely sick of everything right now. To make matters worse, my old man refuses to ask those "god-complex" doctors a single question because he's terrified of offending them—as if you aren't allowed to actually speak up in a medical appointment! It’s driving me insane.👎
Right before Christmas, his radiation orders were changed. Dr. Soltysek noted that we should start with imaging of the lower back area, but since then, we haven't been able to track down another doctor to sign off on the paperwork. So, the scans are still stuck on the old settings—though at this point, it’s not even necessary anymore.
For the first ten days, they were hit with 10-minute radiation sessions. It was all pretty much guesswork because there wasn't even a doctor on hand to determine the exact dosage or what specifically needed targeting, so they just went in with rough estimates. Look, you don't have to believe me, but this is the reality of it—and honestly, I could tell you about much worse stuff than this. Total flop.
I asked the doctor for a final diagnosis, and he just hits me with this arrogant attitude, basically asking, "Why do you even need to know? You didn't go to medical school, so what does it matter to you?"
In the end, I started babbling about something that made absolutely zero sense. I sat there scribbling it all down, only to realize later that someone had gone and smeared my work with a marker.🙄 Anyway, something that has absolutely nothing to do with this.😢
We decided to take him to a private doctor this Monday without letting the hospital know. We just need someone to clean out that infection, and we're going to get an MRI done so we can finally see if anything has actually changed.
So, basically, they just sleep through everything, forgetting it all happened...
One day, things are going to get better.😢

That’s a tough break. Look, the guy has clearly decided to play by his own rules, and honestly, you’re probably not going to talk him out of it.
When you're dealing with doctors who act like this, you honestly need to bring a little arrogance to the table. If they approach you with that kind of attitude, you have to push back. Corner them again. Tell them straight up that they've made a mistake regarding your diagnosis, because once you actually look into the facts, what they're saying just doesn't hold water.
Be brave, stay proud, and just be yourself, honey.

P.S. If you managed to track down the name of that medication, please let me know.

Angela Wright said:I’m so sorry you’re dealing with this. Look, he’s clearly decided to just do things his own way, and honestly, it’s going to be an uphill battle trying to convince him otherwise.
When it comes to talking to the doctor, you actually need to show a little bit of backbone when they take that kind of tone with you. Go back in there, press him, and tell him he was mistaken about the diagnosis—tell him you did your homework and what he said just doesn't add up logically.
Stay strong, stay proud, and just be yourself, sweetie.

p.s. if you managed to find out the name of that medication, please let me know.

Man, the old guy has become impossible to deal with...*
Poor woman, stuck with him.😢
Now that his blood work is a total disaster, I try asking him straight up how much cyclamen juice he’s had, or how much Propolis, Noni, or Beta-glucan he's been taking.
Of course, he claims it's nothing. He lies and says he isn't taking any, but if his doctor were a complete idiot, he’d probably believe him!🙄
He’s starting to realize I was right all along, but what’s the point now?
And trying to corner the doctor is mission impossible—it's like trying to win the Powerball.😁

Amy Hayes28 said:Man, he’s becoming impossible to deal with...*
Poor old guy, stuck dealing with him😢
Now that his blood work is a total disaster, I try to get him to be honest about how much Ceylon cinnamon juice, Propolis, Noni, or Beta-glucans he’s actually taking.
Of course, he claims he hasn't taken anything, but if his doctor told him it was working, he’d believe it in a heartbeat, even if it were complete garbage.🙄
He’s starting to realize I was right all along, but what’s the point now?
And trying to pin down the doctor is a lost cause—finding him is like trying to hit a six on a lottery ticket.😁

Try being Tactical when you talk to your dad. You know, ask things like, "What would you think if..." or "I heard from so-and-so that Propolis really helped them. What do you think?" Be just a little more persistent. I already mentioned this way back at the start of this thread. I went through similar battles with my mom, and the best way to handle it was this specific approach. It gives her the space to make her own decisions while I’m still indirectly nudging her toward the right choice.

Amy Hayes28 said:Man, he’s become such a pain in the neck...*
Poor old lady dealing with him😢
Now that his blood work is a complete disaster, I try to get him to be straight with me—how much Ceylon juice has he actually had? How much Propolis, Noni, or Beta-glucans?
Of course, he claims he hasn't taken anything. He lies about taking them, but honestly, if his doctor told him it was helping, he'd probably believe it in a heartbeat.🙄
He's starting to realize I was right all along, but what's the point now?
And trying to corner the doctor? Forget it. You'd have better luck finding a needle in a haystack.😁

It sounds like we're fighting the exact same battle!
My mom's chemo has been pushed back twice because her blood counts were trashed. She's drinking Propolis, Beta-glucan, Taheebo tea... Once, things seemed to improve, and we thought it was thanks to the Beta-glucan, but the second time, nothing happened.
So, we started giving her this blend of shredded beet, apple, carrot, and horseradish. As for juices? Don't even get me started. She won't touch them, claiming they're "too sweet" and bad for her blood sugar. Can you believe that? Meanwhile, if you put a massive plate of cookies on the table, she'd polish them off in seconds!! Not to mention the greasy pastries, bacon, and all that other stuff.
Anyway, her blood work finally looked good enough one day that we got the green light for the next chemo cycle. We start tomorrow.
And her blood sugar was at 30 on New Year's Day! Who knows what she was sneaking into her mouth before we stepped in to monitor her...
Honestly, she doesn't notice a thing, which is almost a blessing. She's already making plans for ten years from now... while those of us close to her are already going out of our minds.

Look, that high blood sugar is being triggered by the dexamethasone. It’s provoking it. A reading of 30 is insanely high—we're talking potential coma territory here. You absolutely have to demand they prescribe some oral glucose medication, because even though the level is at 30, insulin is still an option. Give Vuk Vrhovec a call and ask for advice, especially since you're dealing with patients whose blood sugar is this volatile.

And here I was thinking my mom's 17 was way too high.🙄 She was taking Glucophage.

Greetings, everyone.

I attempted to send you a private message, Angela Wright, but apparently... your inbox is completely overflowing. Regardless... I am reaching out today on my own account. I received my blood work results today, and there are certain abbreviations that leave me somewhat perplexed, so if anyone happens to be knowledgeable, please respond here...

For the most part, everything seems to be within a reasonable range. I do suffer from PCOS, so I am well aware that certain values are expected to be elevated... yet... I still struggle to grasp the full implications of all of them!

SHBG = 27.38 nmol/L (F: 20 - 130) ..<so this appears fine>
FAI (TT/SHBG*100%) = 18.26 (F: 0.29 - 6.78)

My testosterone is slightly higher than the standard norm... though I certainly anticipated as much.

DHEA-S = 15.79 umol/L (F age 25-34: 2.68-9.23).

Thank you all for your assistance...
kisses

Does anyone have the direct number for Boris Vucelić at the Mayo Clinic in Washington, D.C.?

If you have it, please just shoot me a private message.

Otherwise, does anyone know the best way to track down his contact info?

Megan Grant73 said:Does anyone happen to have a contact number for Dr. Boris Vucelić over at the Mayo Clinic in Washington, D.C.?

If you have the info, just shoot me a private message with the number.

If you don't already know, does anyone actually have a clue how I can get ahold of that number?

Boris Vucelić heads up the Gastroenterology Department at the Mayo Clinic. If you’re looking to get in touch with him, don't bother hunting for a direct line—it’s a fool's errand. The simplest way to navigate this is to call the Mayo Clinic directly, ask for his specific department, and then coordinate with the nursing staff to find out when he’s actually available for consultations. Doctors at places like the Mayo Clinic are absolutely slammed; trying to reach them by phone is like trying to catch lightning in a bottle. Most of them keep their private numbers strictly under wraps, and even if you did manage to get a cell number, they tend to swap phones out several times a year anyway. Your best bet is to make the call around 9:00 AM, right before the morning rounds and consultation meetings kick off. That’s usually the sweet spot where you might actually catch someone on the unit.

Nancy Hernandez43 said:Hi everyone!

I tried sending you a private message, Angela Wright, but it looks like your inbox is completely maxed out. Anyway... I’m reaching out because of my own situation. I got my bloodwork results back today and there are some abbreviations I just don't get. If anyone knows what they mean, please let me know here!

For the most part, everything seems pretty much within the normal range. I deal with PCOS, so I’m fully aware that certain levels are expected to be higher than average... but still, I don't understand all of these!

SHBG = 27.38 nmol/L (F: 20 - 130) ..<so this is fine>
FAI (TT/SHBG*100%) = 18.26 (F: 0.29 - 6.78)

Testosterone is slightly elevated compared to the standard norm, but I was honestly expecting that.

DHEA-S = 15.79 umol/L (F 25-34yrs: 2.68-9.23).

THANKS to everyone for the help!
kisses

SHBG is a protein (*) produced by the liver, and an increase in its levels is linked to how estrogen affects the liver.
SHBG is a useful metric when there's suspicion that free Androgens (?)—like Testosterone, for example—might be relatively high.
I found this on a German website...
Which gives us:
TT = Total testosterone

SHBG = Sex hormone binding globulin(*)

FAI = Free Androgen Index = 100*TT/SHBG

😢

brightgardener8 said:It sounds like we’re fighting the exact same battle!
My mom has had her chemotherapy postponed twice now because her blood counts were looking terrible. She’s been taking Propolis, Beta-glucan, drinking Taheebo tea... At one point, things seemed to improve slightly, and we actually thought it was thanks to the Beta-glucans, but then the second time, nothing happened at all.
Then we started giving her this homemade blend of shredded beets, apple, carrot, and horseradish. As for juices? Forget about it. She won't even hear of them; she claims they're "too sweet" and bad for her blood sugar. Can you believe that?! Yet, if you set a massive plate of cookies on the table right in front of her, she’d polish them off in seconds!! And don't even get me started on greasy pastries, bacon, or anything like that.
Anyway, her blood work looked great the other day, so we finally got the green light for the next chemo cycle. We start tomorrow.
And her blood sugar was at 30 on New Year's Day! Who knows what kind of junk she was sneaking in while she wasn't being watched...
Honestly, she doesn't realize a single thing, and in a way, I'm glad. She's already planning out what she wants to do ten years from now... meanwhile, those of us close to her are already losing our MINDS.

I find myself laughing when I read stories about someone else going through this, but when I think about it happening to us, I just want to burst into tears!
The absolute worst part is when we're on the phone and he just spins in circles for half an hour, repeating the same nonsense over and over, forgetting the most important details, while I sit there pretending I understand everything and acting like it's all fine.🙄
God, give us strength.🙏

Angela Wright said:Listen, that high blood sugar is being caused by the dexamethasone. It’s triggering it. A reading of 30 is extremely high and could lead to a coma. You absolutely need to demand they give him some glucose tablets—even though at 30, he might actually need insulin. Give Vuk Vrhovec a call and ask for advice, especially since you're dealing with patients whose blood sugar levels are this volatile.

And here I was thinking my mom's 17 was way too high.🙄 She was taking Glucophage.

He’s on insulin now, and it dropped to 14.
I'll see about the Dexidex; instead of those, they could potentially give him Mannitol, right?
I already asked them about switching his meds because his heart is weak and the Dexidex is putting even more strain on it, but honestly, it feels like fighting windmills. I don't even know if I should be suggesting anything at all.🙄
Angela, you seriously need to go to med school so America can finally get some decent doctors.😁

Amy Hayes28 said:He’s getting insulin, so his levels dropped to 14.
I guess we'll see about using Mannitol instead of Dexedrine—that's an option, right?
I already asked them about switching since his heart is weak and Dexedrine just puts too much strain on him, but honestly, it feels like fighting windmills. Who am I kidding? I shouldn't even be suggesting this kind of thing.🙄
Listen, Ivanica, you should seriously go to medical school so America can finally get some decent doctors.😁

Mannitol acts like an osmotic agent to pull down edema, but it carries a massive yo-yo effect. Usually, for severe swelling, they hit it with Mannitol first to stabilize things, then maintain that state with Dexedrine.
Unfortunately, those drugs are a double-edged sword, and they end up using them simultaneously. My dad is hopefully on some cardiac meds like Atenolol now.

Forget my med school dreams—I don't have the stomach for it. Instead, I'm just going to start an Association where we actually collaborate with competent doctors. Trust me, they exist. I've got two of them just in my own family.
👍

Hey everyone!
My dad (56) just got diagnosed with colon cancer yesterday 😢
He’s been dealing with digestive issues for years, but he just kept putting off all those tests his doctor insisted on...
The tumor is large, but there's still about 6 mm of space left for things to pass through the bowel. He had an abdominal ultrasound, and they mentioned seeing some changes in his liver—they think it might be unrelated, but they want him to get a CT scan just to be sure.
Honestly, I have no clue how to act right now. I'm absolutely terrified, but I know I can't let it show 😢
If anyone here has gone through this type of cancer or has any advice at all, thank you so much.
Sorry if I'm repeating myself, I haven't had a chance to catch up on the whole thread yet, but I'll be reading more over the next few days...

Carol Edwards81 said:Hey everyone,
My dad (56) was diagnosed with colon cancer yesterday. 😢
He’s been dealing with digestive issues for years, but he just kept putting off the tests his doctor insisted he get done...
The tumor is large, leaving only about 6 mm of the intestinal passage open. He also had an abdominal ultrasound where they mentioned some changes in his liver; they think it might be unrelated, but they still want him to get a CT scan to be sure.
Honestly, I have no clue how to act. I am terrified, but I know I can't let him see that. 😢
If anyone has gone through this type of cancer or has any advice at all, thank you in advance.
Sorry if I'm repeating myself, I haven't had a chance to catch up on the whole thread yet, but I will over the next few days....

Fear is a completely normal, natural reaction. It usually settles once treatment actually begins. I truly hope those liver findings aren't related to the colon cancer. Doctors wouldn't leave things hanging with vague statements like that unless there was a reason to wait for more data. If there are no metastases in the liver, treating the cancer becomes much more straightforward and the prognosis improves significantly.
Try to act as normally as possible. You cannot allow an atmosphere to develop where the illness starts running your entire lives. It has to stay under control, and you need to set that tone from day one. Your dad is still the same man he has always been; he just happens to be fighting a disease that can be beaten. You have to build a positive mindset right from the start—just take it one day at a time and tackle whatever comes your way. Right now, just wait for those results so you have a clear picture of what you're facing and what the next steps are. Trying to jump ahead and worry about the future is completely counterproductive.