Support resources for families dealing with cancer and other serious illnesses

Hey everyone!

Dear Sneky, I just read your post about battling that vascular tumor. Honestly, I’m just blown away by your courage and your sheer will to fight... please, keep going and never give up. I’m also crossing my fingers that the surgery you mentioned for February went smoothly.

About two weeks ago, my dad was told by doctors at the Mayo Clinic—working with Prof. Vukić—that they suspect a vascular tumor. We're still in limbo, though; he’s waiting on an angiogram before we get any real answers. It isn't anything massive yet, just some kind of anomaly where the vessels on his right side seem thickened. He’s mostly functioning okay, but he gets these headaches, and occasionally he’ll stumble over a word while talking, or his right eye will start twitching. I’m terrified, honestly—I'm so scared things might take a turn for the worse. They aren't suggesting surgery right now; instead, they want to try that Gamma Knife method you mentioned. You said it wasn't the right fit for you, though...
That's all for now, but please check in so we know how you're doing!

Sending so much love your way—wishing you a speedy recovery and hoping you can finally get rid of that "beast," as you call it. 🙂

Megan Parker68 said:My dad was diagnosed with colon cancer that had spread to his lungs, liver, and brain. He underwent radiation for the brain metastases, and they actually shrunk by more than 50% after just three sessions.
After that, he started chemotherapy. Those first two or three rounds really wiped him out—he couldn't even get out of bed—but once he got past those initial ones, he started feeling surprisingly good; you wouldn't even know he was sick. His hair fell out, obviously, but I just look at that as proof that the medicine is doing its job. His lungs and liver are completely clear now, and the cancer has retreated, which is something our whole family celebrated. You have to celebrate those moments, especially when a doctor tells you months ago that your father doesn't have much time left.

Don't listen to all the noise, and please, don't go reading anything on this crazy internet; people will write just about anything, and those medical shows aren't helpful either because every patient is different. Just listen to the doctors and try to hold onto hope that everything will turn out okay. That’s truly the only thing that helps.
And please, don't dwell on the dark stories you hear regarding chemo or radiation; anyone who makes a recovery did so precisely because of the chemo and the radiation, so what else would they have used?
Every doctor prescribes what is best for the individual patient, and that will be true for your mother too. The most important thing is not letting the illness progress; believe me, I was practically counting down the days until my dad could start chemo because there were so many complications beforehand.

And there I go, tearing up again...
Sending love to everyone, stay strong.

unknown, thank you for such an incredible post 🙂

She finished her first cycle of chemo. It went relatively well, thank God. She had one day where she felt incredibly nauseous, but the doctor increased her anti-nausea dosage and she felt much better almost immediately.

Her appetite has definitely dropped, and she’s developed some sores in her mouth, which she rinses with sage, and she says that helps a little bit. Still, she eats as much as she can. Fruit seems to agree with her, which feels like a great sign to me. Better than nothing, right?

The other day she told me that, for the first time since the surgery, she was able to lie on her side without feeling that sharp stinging sensation in her abdomen. So, there is some positive progress after all. 🙂

Lisa Adams said:My dear friends... I'm joining you now. 🙂

I’ve popped in here from time to time just to see how everyone is doing and to offer a bit of encouragement... but I never really wanted to be the one to write something serious... you can probably guess why... my heart is heavy right now.

But now, I feel like I have to.

It's hard because
hanging in there 😢 is difficult
🙂

What’s everyone using to manage oral mucositis—you know, that painful inflammation of the mouth that tends to crop up as a side effect of chemo?
I’m curious to hear what actually worked for you all?

Kimberly Wright said:What works for treating oral mucositis—you know, that mouth inflammation you get as a side effect of chemo?
Anything you’ve found actually effective?

Betadine mouthwash solution.

Angela Wright, thanks so much!

Kimberly Wright said:Thanks, Angela!

Don't mention it; there's no need for thanks.
Just a heads-up, though—the flavor is a little bland.

Angela Wright said:Betadine mouthwash solution.

So, I picked up some Betadine at the local pharmacy...
but I noticed the contraindications mention avoiding it before and after radiation therapy. 😕
I can't help but wonder, how much time are we actually talking about when they say "before and after"? 😕
My mom starts her radiation treatments this coming Monday...

man, honestly, someone really ought to sit down and draft some brief, practical instructions for people who find themselves grappling with an illness like this 😁

Kimberly Wright said:I picked up some Betadine at the pharmacy...
The contraindications mention avoiding it before and after radiation therapy. 😕
How long is "before and after"? 😕
My mother starts radiation this Monday.

Hmm... my instructions from 2003 only list iodine hypersensitivity under contraindications. Clearly, guidelines have changed. 🤷

redharbor23 said:Hmm... looking back at my instructions from 2003, the only contraindication listed was an iodine sensitivity. It seems like things have changed since then, I suppose. 🤷

I actually just went back to double-check everything...
and it turns out the last time the manual was updated was January 2005.

But honestly, none of that matters as much as the fact that Mom is feeling a little better. Using some Betadine for a day or two isn't going to hurt anyone, right? I'm heading over to see the doctor tomorrow to pick up her prescriptions, and from what I can gather, she’s already set up a script for Rosul..

I need some perspective here.... A relative was just diagnosed with advanced lung cancer that has already spread to the liver. She’s trying to be brave and isn't talking much about it because she doesn't want to worry us, but I'm struggling with the reality of how much time we actually have left. Surgery is off the table, and she starts chemotherapy next week. Honestly, I have no idea if we are looking at months, days, or years.

Kimberly Wright said:I'm heading to the doctor tomorrow for my prescriptions, and from what I can tell, she's already prepared a script for Rosul.

Rosul was a staple in my father's medicine cabinet too. Honestly, I've lost track of just how extensive our home pharmacy used to be.

ironpanther said:I need some help... a relative has been diagnosed with advanced lung cancer that has metastasized to the liver... she doesn't want to talk about it much or worry us, but I want to know how much time we actually have left... surgery is off the table, and she starts chemotherapy next week. I honestly have no idea if we are talking about months, days, or years.

That isn't good; in fact, it sounds quite grim. However, there is far too little information here to make any definitive statement, as every case is unique. That "timeframe" people often discuss rarely carries much weight.
Has anyone else in her immediate family spoken with the doctors—someone who might actually have more clarity on the situation?

Hello, everyone... I’ve decided to join this group and share my own hopes for recovery, while also wanting to acknowledge the incredible courage and kindness you all show one another here...
My father has been in the hospital for over a month now—he had heart surgery about seven years ago—after being struck by a severe case of pneumonia. It’s a heavy situation; he’s currently waiting on a heart transplant, and while we are fully aware of the risks involved, there's this constant, underlying fear because we know his condition is fragile and can't be sustained indefinitely... yet, we still hold onto hope... we keep hoping for a miracle...
I wasn't sure if anyone else here has gone through something similar, but if you have, I would truly appreciate hearing how things turned out for you...
I try my best to stay positive and believe everything will work out, but the anxiety is hard to shake... it hits me every time the phone rings, every time I try to go to sleep, and every single morning when I wake up... I just dread what kind of news I might face...

ironpanther said:I need some help here.... a relative has been diagnosed with advanced lung cancer (it has metastasized to the liver)... she doesn't want to talk about it much because she doesn't want to worry us, but I really want to know how much time we have left... surgery isn't an option and she starts chemotherapy next week. I honestly have no idea if we are looking at months, days, or years remaining.

Unfortunately, when you're dealing with lung cancer that has progressed this far, doctors rarely offer any good news regarding long-term survival.

That said, you have to remember that medicine isn't one-size-fits-all; every patient is their own unique case. We are seeing massive breakthroughs in research right now that are completely shifting how we approach oncology, moving toward highly personalized treatments tailored to the individual.
Don't spend your energy mourning her before she's even gone; instead, focus on the fact that she is still here, right now, and make the most of every second you have together. Honestly, that’s how everyone should live, whether they’re healthy or fighting a disease. We are all incredibly fragile and transient. One moment we're here, and the next, we're gone. Obsessing over the exact moment someone might die just pulls your entire focus toward a dark, anxious void, rather than focusing on the quality of life you can actually influence while you still have the chance.

Angela Wright said:We’re just fragile, temporary things. One second you’re here, the next—poof—you’re gone. Honestly, obsessing over how someone is gonna kick the bucket soon just drags your whole vibe down into this dark, anxious hole. It’s better to stop spiraling about death and actually focus on making your life worth living while you've still got it.

👍

Checking in with you all... though I don't have much good news to share today.
As I mentioned before, I went to that out-of-state clinic on February 23rd to finalize everything for my surgery... but once again, things have hit a snag.
It turns out they can't move forward at that specific facility. They suggested a different clinic over in Switzerland instead, and it would still be performed by the same specialist I saw during my initial exam.
Now, I'm stuck waiting yet again...
I'm just waiting on a formal letter explaining why treatment at the first clinic isn't possible. I need that documentation to file a claim with Medicare so I have a valid reason to request a change in my out-of-state referral.
There’s absolutely nothing I can do to speed this process up. This whole situation is pretty depressing, and dealing with the daily pain makes it even harder. I just keep telling myself that these tough days will end soon. Sending my best to everyone else out there fighting their own battles...🙂

swiftdrifter88 said:Hey everyone, just wanted to say hi!

Maria Lee54, I read your post about your cardiovascular tumor. Honestly, I’m just blown away by your courage and your will to fight for your life. You have to keep going like this—never give up. I'm also really hoping that February surgery you mentioned went well.

About 15 days ago, Dad went in for a scan at the clinic with Prof. Smith because they suspect a vascular tumor. They aren't certain yet, though. He’s waiting on an angiogram before they can give us any real answers. It isn't anything massive, just some kind of anomaly—like the veins on his right side have thickened. He’s functioning pretty well most of the time, but he gets headaches occasionally. Sometimes he trips over his words while speaking, and his right eye tends to twitch. Honestly, I'm terrified. I'm just scared things are going to go wrong. The doctors said they wouldn't operate right away. Instead, they want to try that Gamma Knife method you mentioned. But didn't you say they weren't willing to use that method with you?
That’s all from me for now. Drop us a line when you can so we know how you're doing!

Sending my best. I'm sending you lots of hugs—hope you feel better soon and get that "lump" taken care of, as you call it. 🙂

Hey Ted, thanks for the kind words of support.
I completely get why you're scared. But try to focus on this: once your dad's angiography is done, the doctors will have a much clearer picture. That's when they can actually map out a real treatment plan. In my case, Gamma Knife wasn't even an option because my tumor was too large and stretched into my neck.
Everything’s going to work out. Just stay positive and keep moving forward. Sending good vibes your way. 🙂

Maria Lee54 said:I wanted to check in with you all... though I don't have much good news to share..
As I mentioned previously, I was scheduled to undergo my surgical procedure at an international clinic on February 23rd... however, things have hit another snag...
It turns out that specific clinic won't be able to proceed. They've suggested a different facility over in Switzerland instead, though the same professor who performed my initial exam will still be handling the surgery.
And now, once again, I am stuck in this agonizing waiting game...
I am currently waiting for them to send me a formal written explanation stating why treatment cannot be carried out at the original clinic. Once I have that, I can submit a request to Medicare to justify the change in facilities and get the paperwork moving for the new clinic..
I feel completely powerless to speed up this bureaucratic process. Beyond the sheer depression caused by this entire ordeal, I am struggling daily with the physical pain, trying to reassure myself that these hardships will soon come to an end. Sending my best to everyone here—stay strong as you fight your own battles...🙂

🙂
The waiting is absolutely soul-crushing. 😲
I truly admire your strength in dealing with this. 🙏
In both of my own surgeries, I had to wait two to three weeks, and the anticipation drove me absolutely insane. Even a single day's delay felt like the end of the world to me. 🙄 From what I recall, you have been waiting months for this operation already.
Is there any sign that your tumor is growing?
Hang in there. 🙂

feralridge3 said:🙂
The waiting is just brutal, isn't it? 😲
I honestly don't know how you manage to stay so composed through all this. 🙏

feeling it too
Maria Lee54, I really have to hand it to you—your courage and sheer persistence are something else. 👍
I'm crossing my fingers that you can get through all this paperwork quickly so you can finally head in for the surgery. 🙂

I just saw the news that Tom Vrban passed away..
It’s not that I was deeply immersed in his life or his work, but I find myself constantly shaken by the news of someone passing from cancer, especially when they seemed to be making such genuine progress toward recovery😢