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Resources and support for families dealing with cancer and serious illness

Started by Angela Wright · · 👁 26 views · 3K replies

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Participants Angela WrightChristian Wilson16Morgan Williams4Jeremy Nelson3John Chase6steelbadger83hiddentiger80urbanjackal3silentviper30mistyranger4ruggednomad182placidfalconJerry Morales4frozenviper492velvetgull9Joshua Flores48Frank Ramirez23Roger Hall15Walter Cox5mellowlynx8boldjackal70northernfox9ALaura Gomez10 …
slyseal28 slyseal28 Member
11 messages
joined Mar 2007
#181 ·
analogcobra94 said:This is my first time on this forum, so I’m hoping anyone who knows their way around here can help clear a few things up for me.
My brother was just diagnosed with synovial sarcoma.
He had surgery to remove a tumor located right behind his knee. He’s currently hospitalized and they’ve just started him on chemotherapy.
If anyone has any insight into what we should be expecting or what the prognosis looks like, please, let me know.
I’m flying out to see him this Friday, but ever since I got the news, I’ve felt completely hopeless. My whole world has just collapsed, and I honestly don't even know how to process this.

Was the tumor removed in its entirety?
Charles Edwards8 Charles Edwards8 Member
46 messages
joined Feb 2007
#182 ·
Looks like Charles Edwards8 is joining the club here too 👎
slyseal28 slyseal28 Member
11 messages
joined Mar 2007
#183 ·
Whenever I find myself diving into articles about cancer—everything from general overviews to the specifics of chemotherapy—my mind always drifts back to the very beginning of the problem. What actually triggers it? The literature lists all the usual suspects: external factors like smoking or environmental pollution, weighed against the hereditary stuff, like those tumor suppressor genes and anti-oncogenes... (😕 look, I’m no doctor, so most of this feels like pure abstraction to me).
Does chemotherapy actually fix those faulty genes, or do they just stay there forever? If they stick around, is that why we see relapses? Does anyone here actually have some insight into this?😕

I mean, how do you even go about curing a gene?
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#184 ·
slyseal28 said:How do you cure a gene?

Well, you just asked the million-dollar question.😁

The cold truth is that you can't just "fix" a bad gene once it's there. However, if we look at the long game, medical science is working toward a future where we can use IVF to modify an embryo's genetic makeup, hopefully scrubbing away those predispositions to various diseases before a child is even born.
Think of it this way: having a genetic predisposition isn't a guaranteed death sentence; it’s just a loaded gun. It doesn't mean you'll definitely get sick during your lifetime. What interests me far more than the genes themselves are the "triggers"—those environmental factors that act like a match to a fuse, igniting that faulty gene and kicking off abnormal cell division, which leads to things like cancer. Smoking, for instance, is one of those massive triggers, along with several other high-risk lifestyle choices. Of course, the baseline genetic predisposition still plays a heavy role in how easily that fuse is lit.
The whole genetic landscape is incredibly complex. For a bad gene to actually manifest as something like cancer, the odds skyrocket if you inherit that specific defect from both sides of the family tree. We're talking about a cumulative effect—if you have close relatives on both your mother's and father's side who suffered from the same issue, the statistical probability climbs significantly (and I suppose that pattern can stretch out to distant cousins too).
It's a grim reality that we are living witnesses—and often victims—of various harmful manipulations of the human body, including our reproductive cells. Radiation, for example, can wreck the very genetic structure held within an egg or sperm cell. When fertilization occurs involving one or both of these compromised cells, children can be born with degenerative issues. These might not always be glaringly obvious at birth, but these kids become carriers of a degraded genetic code that is inherently prone to further mutations in future generations.
Genetic disorders can also stem from much less "radical" causes. Quite often, even a relatively minor benign illness can damage reproductive cells enough to result in offspring with genetic defects.

On the flip side, exposure to negative radiation or the ingestion of free radicals—essentially toxins—can damage a cell so severely that it goes haywire and begins dividing uncontrollably in a malignant fashion, even if the gene itself wasn't initially broken.

Chemotherapy and radiation work by nuking malignant cells, essentially stopping them from dividing and spreading their mutations throughout the body. Regarding your question about relapses and the likelihood of them returning, we've touched on this here recently, and regardless of what the genetic profile looks like, my stance remains unchanged.

To put it bluntly and simply, that's the extent of what I know.🙂
Steven Murphy Steven Murphy Newcomer
5 messages
joined Feb 2007
#185 ·
How do you cure a gene?

It’s actually possible to swap or insert a gene directly into a cell and then track its expression! A straightforward example would be retroviruses, which can integrate themselves right into cellular DNA, allowing them to persist indefinitely. Scientists use similar techniques in vitro to mimic this exact mechanism.
Maybe an even easier way to visualize this—if you’re into agriculture or have ever spent time harvesting corn out in the Midwest—is looking at multicolored corn kernels, like those black, white, or yellow varieties. What you're really seeing there is the movement of DNA segments (transposons) that jump independently from one strand of DNA to another, integrating themselves on their own (just ask the Nobel Prize winner Barbara McClintock). We see a similar phenomenon in the animal kingdom during germ cell maturation (recombination), though the whole process is kept under incredibly strict control.
Whether altering DNA segments or inducing gene mutations is "acceptable" really just depends on your perspective. If you’re looking at a fully formed individual with specialized cells, it's likely an undesirable occurrence (think of things like bcr-abl in multiple myeloma). But if you look at it through the lens of evolution (germ cells), it’s an incredible advantage. By swapping DNA segments or through single-gene mutations (polymorphism), an organism can gain the necessary edge to survive in entirely new environments.

EVOLUTION AT THE MOLECULAR LEVEL IS NOTHING MORE THAN RECOMBINATION + MUTATION!!!

But honestly, what might be more critical than a gene mutation in tumor cells is the loss of the internal ability to regulate cell proliferation (endogenous control). The reasons behind this are as numerous as the control mechanisms themselves. In most cases, the issue isn't necessarily a change in the actual sequence of nucleic bases within the gene itself, but rather an increase or decrease in the expression of a whole series of genes. That’s why, following the Human Genome Project, the Proteome project was launched to study gene products (proteins). It’s going to provide us with much deeper data on how we actually function, both at the cellular level and across the entire organism.
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analogcobra94 analogcobra94 Newcomer
3 messages
joined Mar 2007
#186 ·
Back again. I was off the grid over the weekend—went to visit my brother out in Chicago...
Charles Edwards8, slyseal28
any of you have any good outlooks for me? Anything at all...
It’s not looking great...
Charles Edwards8 Charles Edwards8 Member
46 messages
joined Feb 2007
#187 ·
analogcobra94, hey, shoot me a DM please.

Jane and slyseal28, I went ahead and got the Mambo site up and running, so now
we just need to nail down the design and figure out our game plan. Personally, I’d love to team up with you guys 👍 and I think anyone interested should definitely jump on this.
The vision for the site—the core idea is basically building a "patient guide"
with a huge focus on interactivity.
I've done some web work before, so I know this won't be a walk in the park, but hey, we can give it a shot. 👍

Jane, unfortunately, the state of non-profits here in America is pretty much what you'd expect. 🙄 If I'm remembering correctly, there are about 50 organizations in the US that should be tackling the exact issues we're discussing, but like you said, you already know how things really work.😠

Genetics is such a massive, complicated field that we might even need a separate thread for it. From what I know about synovial sarcoma, the cause isn't even fully understood.
Older medical texts used to mention some "alleged" links regarding the development of soft tissue tumors.

For quick and easy communication, I'd suggest using Skype. I much prefer jumping on a call rather than just typing in a chat because, besides being free, 😉 it's just way easier.
slyseal28 slyseal28 Member
11 messages
joined Mar 2007
#188 ·
Web: I feel like we should probably map out a rough framework on paper first. We need to divvy up the workload so we aren't just spinning our wheels; for instance, one person could tackle disease types, another focuses on treatment methods—just speaking off the cuff here—and a third handles necessary diagnostic tests and such. Then, we can meet up or jump on a Skype call to show what everyone has gathered before finally pushing it all live to the site.

Regarding the Skype situation, I’m in total agreement. I'll get that sorted out later today.

As for the genetics side of things: my hope is that through this website project, we might actually uncover some insights into why all these horrors emerge in the first place—or, to use Angela Wright's phrasing, identify those "triggers" that kickstart malignant cells into action.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#189 ·
Alright folks, I'm checking in too!
I got absolutely wrecked this past Wednesday—ran a 102 fever, likely some allergy combo acting up alongside a sinus infection🙂. I've been taking Claritin, which is helping things settle down👍
Honestly, the world has basically stopped spinning here the last few days because I've been out of commission, though at least dad has stepped up a bit🙏. He called a doctor over by the Boardwalk to see what else we can do for Mom. My gut tells me they won't admit her, but I'm hoping they'll at least take her in for half a day and get some mannitol into her to stabilize things, because I'm convinced her edema is spiraling. Her lip has been twitching constantly for a week now and she can barely speak; she gets blocked up mid-sentence, trying to say something and then just stopping. That’s what scared me the most—not being able to tell me where it hurts or if it even hurts at all...😢

Charles Edwards, I've been meaning to reach out to you for a few days now but haven't had the chance; as soon as I catch my boyfriend, he's also a bit out of sorts right now.

As for Skype, sounds good! I just don't want to post my address publicly, otherwise I'll be terrorized by every random person from the Middle East, and I keep my profile under my real name because I use it to track down family overseas. Basically, I can send it to everyone via private message, just shoot me a request🙂
Robert Ruiz9 Robert Ruiz9 Newcomer
5 messages
joined Mar 2006
#190 ·
Hi everyone, and thank you so much for starting this thread.

I honestly think it’s almost impossible to find the right words to describe that heavy feeling you get when you watch your loved ones suffer—let alone when you feel like no one truly understands what you're going through. It feels like only those who have walked this same painful path can really grasp it.
My mom had surgery about four and a half years ago for colon cancer. Oh, the things she has been through since then—all the pain, the endless surgeries... and now, on top of everything, she’s dealing with about eight or nine other diagnoses and, of course, metastases in her pelvis and kidney...
She deals with bowel obstructions constantly (she has an ileostomy now), and even at the hospital, they’re struggling to manage it effectively lately...
The doctors are saying there isn't much left for surgery or oncology to do; just a month ago, they were talking about chemo, but they had to wait because her white blood cell count was too low, and by the time it stabilized, we were back to this heartbreaking reality.
And I am just sitting here wondering, what am I supposed to do?
She has such an incredible will to live, so I simply cannot just sit back and move on with my life like the doctors seem to suggest...
What does "moving on" even mean? She is my whole world, and she is my only mother.

If anyone out there is going through something similar, please, any advice or words of wisdom would mean the world to me, because SHE refuses to give up. And I would do absolutely anything for her; even when I feel like I'm collapsing, I pull myself back up because I know she needs me to be strong.

I know this is all a bit scattered and messy, so please forgive me, but I've just been in such a fog since these recent changes and news started coming in.

I'm sorry for venting like this.
Sending huge hugs to everyone, along with so much love and strength!
Robert Ruiz9 Robert Ruiz9 Newcomer
5 messages
joined Mar 2006
#191 ·
Angela Wright said:Hey everyone, I’m jumping in too!.... Look, I realize they might not admit her to the hospital right away, but I really hope they can at least take her in for half a day and get some mannitol into her system to help stabilize things, because I have this gut feeling—I'm just certain—that her edema is getting out of control. Her lip has been constantly swollen for a week now, and she’s barely able to talk; she gets these blocks where she tries to say something, then just stops mid-sentence. That was honestly my biggest fear, knowing she might not be able to tell me where it hurts or even if she's in pain...😢

Dear Jane, I'm really hoping your mom is feeling a bit better and that she's finally able to communicate what's bothering her.
You truly are such a wonderful and brave person.
Thank you so much for starting this thread.
Sending you so many hugs, and wishing you all the strength and love in the world.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#192 ·
Michelle Hernandez43 said:Dear Jane, I really hope your mom is feeling a bit better and that she's able to communicate what she's going through.
You truly are such a wonderful, brave soul.
Thank you for starting this thread.
Sending you hugs, strength, and so much love.

Thank you for reaching out. My own mom is doing terribly. She has an MRI scheduled for next month, but looking at how things are heading right now, I’m terrified she won't even make it to that appointment.
I have to tell you, the second I saw your username, I was flashed back to that one moment when my mom first came home after her diagnosis. We had this little ritual where we’d both crash on the bed after lunch just to talk. I can still see her lying there on her side while I sat right next to her, holding her, just staring out the window at the clouds drifting by. It was easily one of the most painful, heartbreaking moments of my life; in that exact second, I could feel the weight of all the suffering and pain waiting for us down the road.
My mom, just like yours, was so full of life—a true, fiery Southern belle with a real spark, yet so incredibly fragile underneath it all. I miss her so much; I’ve been crying over her constantly these last few days.
She was so excited about the renovations happening along the Boardwalk, because her favorite thing in the world was heading back home for Easter at Home, then sitting out on the Boardwalk after lunch to relax, grab a cappuccino, and eat some cheese biscuits. When she goes, an entire chapter of my life goes with her—all our rituals, our private jokes, our laughter...
I know exactly what you're going through, but don't give up. Try to find some happiness in the fact that you still have her. My mom is right here, and yet, she’s already gone.
And remember, God's creations are complex, and your fight isn't over yet. There might still be something left to do.
slyseal28 slyseal28 Member
11 messages
joined Mar 2007
#193 ·
Angela Wright said:Thank you for reaching out. My mom is doing terribly. She has an MRI scheduled for next month, but looking at how things are going right now, I’m terrified she won't even make it that long.
I have to tell you, the moment I saw your username, I was transported back to that period when my own mother first came home after receiving her diagnosis. We had this little ritual where we’d both just collapse onto the bed after lunch and talk for hours. I can still see her lying on her side while I sat there hugging her, staring out the window at the clouds drifting by. It remains one of the most agonizing, heavy moments of my life; in that stillness, I could almost feel the weight of all the grief and suffering that was waiting for us down the road.
My mother, much like yours, was so incredibly full of life—a true, spirited Dalmatian at heart, always high-strung yet somehow so fragile deep down. I miss her so much; it’s been a constant ache, and lately, the tears just come so easily.
She was so excited about the renovations happening along the local Boardwalk. Her biggest joy was always getting to go home for Easter at Home, then heading down to the Boardwalk after lunch to sit on the swings, sip a cappuccino, and grab some cheese biscuits. With her gone, an entire chapter of my life has vanished—all our little rituals, our private jokes, our shared laughter...
I know exactly what you're going through. Please, don't give up. Try to find some solace in the fact that she is still here with you. My mother is physically present, yet she is already gone.
And remember, God’s creations are complex; your fight isn't over yet. There might still be something left to be done.

I am so deeply sorry you're having to endure this. Sending you a massive hug.
analogcobra94 analogcobra94 Newcomer
3 messages
joined Mar 2007
#194 ·
Jane, I am so incredibly sorry you’re having to deal with all of this right now. Honestly, only you truly know what it feels like to be in your shoes.
I’m also deeply sorry about your mom.
Hang in there and please take care of yourself.

I’m really grateful you decided to start this thread—we all need the support, even if it's just getting to talk with people who actually get it.
Jeremy Johnson10 Jeremy Johnson10 Newcomer
3 messages
joined Mar 2007
#195 ·
Jane, did you hear back from Rib? Hey, could you just give me the quick rundown on what mannitol actually is... like, what's the deal with why they prescribe it?
best,
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#196 ·
Nicole Edwards76 said:Jane, did you get a hold of the doctor? Please, just give me the short version—what exactly is mannitol, and why are they using it?
Best,

Dad called Dr. Gamulin, and she managed to get an MRI and a consultation scheduled for three weeks from now. Honestly, it makes me sick to my stomach that someone can't just be stabilized and sent home immediately. I doubt the ER will bother coming out, but if things stay this way for another few days, someone’s going to have to show up. It’s physically impossible for us to carry her upstairs on our own because she has zero balance and can't move at all.
Mannitol is basically a sugar solution used to treat brain edema, though it's most common in cases of physical trauma, like car accidents. When you're dealing with tumor-related edema, you run into a "yo-yo" effect where the swelling drops suddenly only to surge right back up. That's why, with tumors, they usually pair it with dexamethasone. They use the mannitol to force the swelling down quickly, then rely on a steady dose of dexamethasone to keep everything stable.
Robert Ruiz9 Robert Ruiz9 Newcomer
5 messages
joined Mar 2006
#197 ·
Angela Wright said:Dad actually called Dr. Gamulin, and she managed to squeeze us in for an MRI and a full consultation in just three weeks! Honestly, my heart just aches knowing someone can't be admitted right away to get stabilized and sent home to rest. I doubt the ER will send anyone out here proactively, but if her condition stays this way for even a few more days, someone really needs to come check on her. It’s just impossible for us to carry her upstairs on our own because she’s completely immobile and has absolutely no sense of balance right now.
Mannitol is basically a sugar solution used to treat brain edema, but you usually see it used for mechanical trauma—like car accidents or similar injuries—because with tumor-related edema, you get this frustrating yo-yo effect. The swelling goes down suddenly, but then it just surges right back up. That’s why doctors usually pair it with dexamethasone. They use it to crash the swelling quickly, and then they keep things steady by maintaining a higher dose of the dexamethasone.

I am so incredibly sorry about what your mom is going through.
It’s especially hard when they can't just admit her immediately to make things a little easier on her.
I don't know if I'm overstepping, but maybe try to really push the ER to take her in so they can get that mannitol started...
Or, and maybe this sounds like a silly question, but is there any way they could organize that at home? Like, could her doctor from the emergency room prescribe mannitol and dexamethasone for home use?
Hang in there!
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#198 ·
Michelle Hernandez43 said:I am so sorry about your mom.
It’s especially tough when you can't just step in right now to ease her discomfort.
I don't know if I'm overstepping, but maybe try pushing the ER doctors to admit her immediately so they can actually administer the mannitol...
Or—and maybe this is a long shot—could they arrange anything at home? Like, could her ER doctor authorize mannitol and dexamethasone for home use?
Hang in there!

Well, she seems a little better today; she's more coherent when she talks, but the dementia is still very much there.
The ER staff could probably give her some mannitol to clear things up for half an hour, but my understanding is that they need clearance from a neurologist or an oncologist first, and honestly, I doubt the ER even carries mannitol in their standard kit. They have dexamethasone, but we already have plenty of those in pill form at home. When things get complicated like this, hospital staff often just sit on their hands and do nothing. It reminds me of that one time Mom was practically in a coma and the hospital wouldn't even take her in; we had to pull strings through a phone call just to get her admitted.
Robert Ruiz9 Robert Ruiz9 Newcomer
5 messages
joined Mar 2006
#199 ·
Angela Wright said:Well, she seems a little better today—like she’s actually making sense when she speaks—but honestly, the dementia is still so intense.
I was thinking that maybe if those folks in the ER could just give her some mannitol to help clear her head for even half an hour, it might help, but I'm pretty sure they need a green light from a neurologist or an oncologist first. Plus, I doubt they even carry mannitol in their standard equipment; they usually have Dexedrine, but we already have plenty of those in pill form at home. When things get this complicated, hospital staff often just freeze up and won't do anything at all. It reminds me of that one awful time when Mom was practically slipping away and the hospital wouldn't even admit her unless we pulled some strings over the phone to get her accepted.

I'm so glad to hear she's feeling a bit more herself.
It is just heartbreaking when hospitals treat people who are seriously ill like that. It’s truly devastating when they turn you away and you're forced to play politics just to get care; my heart just aches for you..
We had it happen so many times where they’d tell us there were absolutely no beds available, gave her a quick injection, and sent her straight back home. She was doing so poorly, and after all that begging and pleading and knowing exactly who to call... finally, magically, a bed would appear...
It always makes me wonder what happens to those poor souls out there who don't have anyone to fight for them.

Please, if you need anything at all, just reach out (you can always send a private message), and I'll do whatever I can to help.

Your mom is so incredibly lucky to have you by her side.
Jeremy Johnson10 Jeremy Johnson10 Newcomer
3 messages
joined Mar 2007
#200 ·
mannitol

Thanks. Yeah, the last time I drove Mom to the ER (maybe 20 days ago?), they gave her a heavy dose of Medrol and I noticed they administered that mannitol too, but I honestly have no clue what it actually does. She felt a ton better immediately after, but now she’s starting to slip again... so it looks like you were right about that temporary fix. Ugh, I'm at a total loss here. I think I'll try getting her back to the ER...
Hang in there, Jane

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