CheckEmoji Community · the emoji forum
🏠 Home 🆕 What's new ❓ Unanswered 🔥 Popular 📡 RSS Members 👥 0 online
log in · register
Home › Lifestyle › Health › Resources and support for families dealing with cancer and serious illness

Resources and support for families dealing with cancer and serious illness

Started by Angela Wright · · 👁 93 views · 3K replies

📡 Subscribe to replies

Participants Angela WrightChristian Wilson16Morgan Williams4Jeremy Nelson3John Chase6steelbadger83hiddentiger80urbanjackal3silentviper30mistyranger4ruggednomad182placidfalconJerry Morales4frozenviper492velvetgull9Joshua Flores48Frank Ramirez23Roger Hall15Walter Cox5mellowlynx8boldjackal70northernfox9ALaura Gomez10 …
Laura Kelly91 Laura Kelly91 Member
23 messages
joined Dec 2007
#2381 ·
dustyranger11 said:The main thing I need to know is: What’s the life expectancy for throat cancer patients? My dad is having trouble swallowing. Other than that, he seems okay, just constant throat pain. Is it better to have the larynx removed or go with radiation? His voice hasn't changed, it's just eating and drinking that's getting difficult... He doesn't smoke...

dustyranger11, look, I know a little bit about this because my own dad dealt with throat cancer. Mind you, this is just my humble, non-professional opinion. Honestly, it’s a good sign if they’re actually suggesting surgery. If they weren't, that would mean the cancer is already too far along, and then the prognosis gets a lot worse. If the cancer is caught in Stage I or II and there aren't any metastases, the outlook is actually pretty decent. It’s up to the doctors to decide whether to go for a total procedure—removing the larynx—just to make sure they kill everything and stop it from spreading or coming back. Every case is different. I’ve seen people in the hospital who had throat cancer surgery, they have a tracheostomy tube, and they’re even talking... slowly, but they manage. It sounds terrifying, believe me, but it isn't. You can live with it. I know people who have lived high-quality lives 15 years after the fact. They just learn how to adapt.
Hang in there!
Let me know if you get any more specific details about his diagnosis.
Best,
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#2382 ·
dustyranger11 said:The main thing I need to know is: what’s the survival rate for throat cancer patients? My dad is having trouble swallowing. Other than that, he seems fine, except for this constant throat pain. Would it be better to have his larynx removed or go with radiation? He hasn't lost his voice, it just makes eating and drinking difficult when he swallows... He doesn't smoke...

Why does that matter so much? Would she feel any better knowing that instead of maybe living to 5, they lived to 6, or instead of 10-15 years, they got a few more? Would those numbers actually make them less afraid? Forget about statistics and averages! When you're fighting a healthy, determined battle, those numbers are completely useless—and for some people, they’re actually counterproductive. No one can give you a definitive answer, other than the fact that we all have an expiration date. Your father, even though he's sick, has a real shot at fighting for his life and living as long as he possibly can. Don't obsess over how much time is left; focus on the quality of that time. Stay positive, stand by your dad through everything, and make sure every single day you spend with him is meaningful. That’s the recipe for everyone, whether they're sick or healthy!
Anyone here who has dealt with cancer in their family or gone through it personally can vouch for this.
mellowcanyon36 mellowcanyon36 Newcomer
2 messages
joined Jan 2008
#2383 ·
dustyranger11, my dad underwent surgery three weeks ago. He had cancer at the base of his tongue, just below the larynx. I’m not sure where your father’s tumor is located, but as we learned, doctors often can't know the full extent of what needs to be removed until they actually open him up. Our doctor was blunt with us, and honestly, there were moments when I thought he wouldn't make it. The surgery itself was grueling, though somehow less intense than the medical team had anticipated. So, you just have to keep your head up and pray that everything turns out okay. When he first came back from the operating room, it wasn't much to look at—he had a tracheostomy tube in his throat to help him breathe and a feeding tube through his nose. But once the initial shock wore off (which is something he shouldn't see), things stabilized. After two weeks, he started talking a little, and soon enough, he'll be eating on his own and hopefully heading home.
But that was just the surgery. The pathology reports aren't good at all, so the real fight is only just beginning. Our doctor mentioned that chemotherapy isn't effective for his specific type of cancer, so radiation is the only option. That said, we are currently working on getting second and third opinions from a few other specialists to figure out our next move.
If it offers any small comfort, the doctor did mention that the lower the tumor is in the throat, the more difficult the procedure becomes, so perhaps your father's surgery might be less complicated.
Stay strong and make sure he knows you're right there beside him; it's incredibly hard, but isn't it amazing how much strength a person can find in moments like these?
Reading this thread has been a massive help to me, even though I don't post very often, so I wanted to say thank you to everyone here. You are wonderful people; if I hadn't stumbled upon this forum, I don't think I would have half the strength I have now.
I wish you all the very best and nothing but luck in your own battles.
Best,
feralwolf24 feralwolf24 Member
26 messages
joined Aug 2009
#2384 ·
Hey everyone!
I’ve run into a bit of a snag. It’s getting really tough to navigate this thread because things are moving at lightning speed. Not too long ago, someone was posting about white blood cell counts and how they might relate to tumors. I’ve been hunting for that specific post for three hours now—I know it was recent, but I either can't find it or I'm just completely missing it. If the person who wrote it happens to see this, could you please point me in the right direction? Thanks so much.
Take care!
quietraven6 quietraven6 Newcomer
2 messages
joined Feb 2008
#2385 ·
Hey everyone.
A family member is getting ready for a bone marrow transplant soon. If anyone here has gone through this or helped a loved one through it, I’d really appreciate it if you could reach out and share what it was like. I'm just trying to wrap my head around the whole process—like, how does it actually work, what kind of risks are we looking at, and how effective is it really🤷? Thanks so much.
Hannah Thomas28 Hannah Thomas28 Member
17 messages
joined Nov 2007
#2386 ·
Ved;12532140 said:Hannah Thomas28, it’s been a while! How are things going on your end? How is your mom doing?

I started typing out a reply and then my computer just died on me!!!
So I'll keep this brief.
What can I even say? I’m still here, checking in whenever I get a chance. I spend most of my time googling, trying to find some miracle story about someone who actually beat this or extended their life... But nothing.
We don't mention the tumor around her. She won't allow it. She insists it isn't there... she's in denial.
Mom is losing weight rapidly, even though her appetite is through the roof. She also gets terrible back pain, mostly at night, which is typical for pancreatic cancer. (She thinks it's just her scoliosis acting up, so we let her believe that.)
Every so often, she gets some swelling around the base of her nose and these tiny dark bumps all over. Could that be from metastasis?
It's been nearly five months since the diagnosis. They told us we had two to five months left... She's still taking B17, reishi, and noni.
And me? I’m just stuck in this state of disbelief, perpetually sad and physically exhausted.
I'm trying to brace myself for what's coming—the increased pain and the moment she finally realizes the pain is from the tumor and that she's dying. I'm terrified she might give up entirely because of how she used to view people in her position... why suffer, right?
So, that's where I am... just hanging in there...

Wishing you all the best
and hope
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#2387 ·
quietraven6 said:Hey everyone.
A family member is heading in for a bone marrow transplant soon. If anyone here has gone through this or knows someone who has, please reach out and share what that was actually like. I'm trying to wrap my head around what the process involves, what the real risks are, and just how effective these procedures truly are🤷. Thanks so much.

I think you'll find this helpful. http://www.mayoclinic.org/articles
Betty Taylor51 Betty Taylor51 Newcomer
1 message
joined Jun 2008
#2388 ·
Angela Wright said:It’s actually quite helpful to note that there is an open discussion thread regarding this exact subject right on our association's website.

I am curious to know if anyone here has any firsthand experience or insights regarding the treatment of colon cancer using that newer "smart" medication, Austin.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#2389 ·
Betty Taylor51 said:I'm looking for anyone who has firsthand experience using that new "smart" drug, Austin, to treat colon cancer.

Have you actually looked at this yet?
slyseal28 slyseal28 Member
11 messages
joined Mar 2007
#2390 ·
My dear friends,

I received a phone call from a woman who has been diagnosed with ovarian cancer. She doesn't have a computer at home, nor does she have access to the internet. She’s going to try her best to find someone with a computer who can show her our site, but in the meantime, let's support her by sending her a letter of encouragement.

She told me briefly that it's Stage III ovarian cancer and that what she needs most right now is support—someone to talk to, specifically someone who has faced this same battle and won.

To all of you here who are currently fighting ovarian cancer, as well as those who have come through the other side: please, send me an email with your story. Tell her how you're fighting, what your diet looks like, or anything else we all struggle with here. Let's put together a letter to let this woman know she isn't alone. Let's encourage her and lift her spirits... All it takes is a few minutes of your time and a stamp.

I know many of you have already shared your experiences in various posts, but rather than me digging through old threads, please just email me your stories directly so I can send them to her on behalf of everyone here.

Whether it's a full story, a formal letter, or just a few sentences of support, please, send it to my email.
Betty Taylor51 Betty Taylor51 Newcomer
1 message
joined Jun 2008
#2391 ·
Angela Wright said:Did you happen to catch this article?

I did read that, along with a few other pieces regarding Austin. It’s quite like any major medical breakthrough—you’ll always find people cheering for it and others expressing skepticism. Since it's only recently become available here in the States, I'm not entirely certain how many patients have actually had the chance to access it yet, but I am sincerely hoping it proves to be a success for those who need it.
cosmicsailor91 cosmicsailor91 Newcomer
5 messages
joined Jan 2008
#2392 ·
Linda Peterson37 said:I’ve got a question—has anyone here dealt with neurosurgery in Indianapolis?
Thanks.

Hey there!
Look, some friends of mine had a nightmare experience with their kid in Indianapolis—it actually ended up in court.
The thing is, whenever things get serious, they just ship you off to Washington, D.C. to go to Rib anyway. In this specific case, the doctor in Indianapolis was basically playing scientist with their kid, even though the poor thing was already in critical condition. I don't even want to get into the details of what they went through.
On the flip side, I know some parents from San Francisco who were ready to fly straight to Germany and pay out of pocket for surgery, but the doctors there told them, "Why bother coming to Germany when you've got Paladin and Mitchell over at Rib?"
Good luck!🙂
cosmicsailor91 cosmicsailor91 Newcomer
5 messages
joined Jan 2008
#2393 ·
quietraven6 said:Hey everyone.
A family member is about to undergo a bone marrow transplant. If anyone here has gone through this, please reach out and share what it was like. I'm trying to wrap my head around how it works, what the actual risks are, and if it really makes a difference🤷. Thanks so much.

Here’s a photo of my little girl when she was barely three—she actually went through this process about a year and a half ago. I'm running around like crazy right now, so I can only jump on here in the evenings.🙂
I'd love to know how old the patient is and what specific condition they're treating?
cosmicsailor91 cosmicsailor91 Newcomer
5 messages
joined Jan 2008
#2394 ·
Betty Taylor51 said:I was wondering if anyone here has experience using that new "smart drug" Avastin to treat colon cancer.

There was an oncologist at the Mayo Clinic who spent about a year working specifically with Avastin. It might be worth checking in with them to get more details.
Harold Ramirez49 Harold Ramirez49 Member
22 messages
joined Sep 2008
#2395 ·
Betty Taylor51 said:I was wondering if anyone here has any first-hand experience with treating colorectal cancer using that newer "smart" drug, Austin.

What specifically would you like to know about Austin?
dustyranger11 dustyranger11 Newcomer
4 messages
joined Aug 2007
#2396 ·
Thanks so much to everyone who replied to my post. My dad is heading in for surgery tomorrow—at least, that’s what they told him—and they mentioned it might be done with a laser? I honestly don't know if that's a good thing or a bad thing. All I know is he's been dealing with this tumor for two years now, and up until this point, it hasn't really caused major issues. Regarding his throat, I just want them to cut it out before it spreads to his other organs. When he went to the hospital today (he was home over the weekend), he told me he's never felt pain this intense. It just absolutely crushed me. I don't have a mom, so everything he has, I am. That makes everything a million times harder. No one else carries this weight with me; I have to do this all on my own. And it’s his heart we’re talking about. I feel like I have no one to turn to at Rib. Nobody knows anything, except for the doctors, and the doctors aren't even there—they finish their rounds and then they're off to surgeries. Honestly, maybe my dad would be better off at a specialized cancer center instead of being stuck at Rib. I haven't exactly had pleasant experiences with them. I don't know if I'm wrong, but that's just how it feels to me.
slyseal28 slyseal28 Member
11 messages
joined Mar 2007
#2397 ·
dustyranger11 said:Nobody actually knows anything; only the doctors have the answers, and they’re never around. They just breeze through the check-ups and then disappear into surgery. Honestly, maybe my dad would be better off at a specialized cancer center instead of being stuck over at Rib. I haven't had exactly wonderful experiences with them. I don't know if I'm being unfair, but that's just how it feels to me.

Try to take a deep breath and realize that even the doctors are often flying blind until they actually get him into surgery. You have to find a way to build some level of trust—be that person who is persistently annoying yet perfectly polite, someone who is stubborn but remains respectful. I hope you catch my drift... As for the weight of it all, it's incredibly heavy when you're carrying it alone, but remember you have us here. We will listen, and we will talk through this with you. Just stay strong and try to keep your composure... getting worked up won't change the outcome...
We're thinking of you and sending all our support... Hang in there.
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#2398 ·
Dear slyseal28,
I won't be having a chance to sit down and talk things through with my mother until the end of the week... since we are only about 48 hours away from her departure for Aviano, I really don't have the heart to press her with any questions right now, lest I give her more reason to dwell on everything... regardless, I'll be sure to get my letter out to her in the next few days once I finally manage to clear my desk... kisses
cosmicsailor91 cosmicsailor91 Newcomer
5 messages
joined Jan 2008
#2399 ·
quietraven6 said:Hey everyone.
A family member is heading in for an autologous stem cell transplant soon. If anyone here has been through this, please reach out and share what it was like. What does the process actually look like, what are the risks, and how effective is it really🤷? Thanks so much.

Hey there!
Stem cell transplants are done for people where surgery, standard chemo, or radiation won't likely lead to a full cure.
We were part of that group of parents who were just incredibly relieved to even get to this stage of treatment—our daughter actually went into remission.
In our case, they collected the stem cells from peripheral blood, but if you can't get enough that way, they go straight to the bone marrow.
The whole point of the transplant is using high-dose chemo—basically "mega-therapy"—to try and wipe out any remaining cancer cells. But because that destroys the bone marrow, you have to put the stem cells back into the body via transfusion so they can settle into the marrow and start making platelets, white cells, and red cells again.
With an autologous transplant (using your own cells), you don't have to worry about rejection. In super rare cases, you might have an allergic reaction to the fluid the cells are stored in, but that’s rare and easily handled while you're in the hospital.
While there can be plenty of complications, they're usually pretty uncommon. We're talking things like bleeding, serious infections, diarrhea, vomiting, organ damage, infertility, blood pressure swings, heart racing, or even liver/kidney failure—but those are extremely rare. Generally, this type of transplant leads to a much faster and easier recovery.
Here was our timeline: 8 days of mega-therapy, then the transplant, then recovery. For the first two weeks after the transplant, my girl and I were in total isolation. For the first four days, her white cell count was at 0.0; on day five it hit 0.4, and it climbed bit by bit every day after that. We finally cleared the worst of it once her neutrophil count stayed above 500 for two days straight. We spent a total of a month in the hospital.
I don't want to give the wrong impression—it was definitely rough. We dealt with deep aplasia, bleeding, fungal issues, and she didn't eat for a whole month... but since her kidneys were already struggling at 70% function and her liver and heart were already under stress, we were braced for things to be way worse. It actually went relatively well without major complications.
As for effectiveness?! There are parents out there who turn this down, but my husband and I truly believe God sent this transplant to us. Our chances at a total cure are much higher, and I honestly believe we beat the beast.
If you have more questions, just ask—I'm happy to help however I can.🙂
wiredranger21 wiredranger21 Newcomer
2 messages
joined Jan 2008
#2400 ·
Hi there.
I have a question.
I’m aware that Taxotere is used to treat lung, breast, prostate, and stomach cancers...
But I was wondering if it can be helpful in fighting melanoma?

You must log in or register to reply here.

Log in Register

🔗 Similar threads