Support for families dealing with cancer and other serious illnesses (Part II)

Svekar is eating normally—he can handle just about anything right now—and honestly, I’m thrilled about that, especially considering how massive his surgery was and the fact that he's even able to eat at all.
However, I was reading some things online about how certain foods can put extra strain on the liver, and I'm getting a little nervous that I might inadvertently cause him harm.
Carl Brooks4, have you by any chance experimented with dandelion root tea? It’s pretty bitter, I know, but I’ve come across some interesting claims suggesting it might help inhibit further cancer cell proliferation and assist in detoxifying the system...

I haven’t tried that specific tea myself, though I’ve definitely heard people talking about it—honestly, I have no clue what the actual nutritional breakdown is! Lately, for the past four weeks, I’ve been doing this routine where I take half a lemon and a teaspoon of Sodium Bicarbonate every morning and night. I struggle with digestion myself, you know? Some folks told me this combo basically flushes everything out from top to bottom, so... we'll see how it goes! I figure I should give my father-in-law anything he can handle; it shouldn't hurt him, and who knows, maybe it might actually help a little. I’d definitely recommend Megestrol if he can take it, but otherwise, just follow his gut. Good luck—and like Ivanna says, stay positive! Though, let's be real, that isn't always the easiest thing to do.

Hey everyone,

Rodak, who is 30 years old, was just diagnosed with Ewing sarcoma starting in his pelvis and spreading to his lungs. It’s quite large, so surgery isn't an option right now because it's putting pressure on his heart. He's started chemotherapy—he's finished two rounds and has four more to go.
Please, if you have any experience with this or if someone close to you has gone through it, we could really use some advice. This is all completely new to us, and we're feeling pretty lost...

Sarah Chase7 said:Hey Maya...

Here’s how things went with my Mom. Once that fluid started building up, she passed away about ten days later. Emergency services took her in once because she was struggling to breathe—it was scary to watch—but they just sent her straight back home without doing a puncture. Honestly, I think they realized it wouldn't change anything; she was already in the terminal stage.

So, here’s how it went down—it started with primary breast cancer, which they managed to operate on successfully. But then things shifted; it metastasized to the eye muscle, and because of where that was located, they couldn't fully get it all out. After that, we were dealing with metastases in the ovaries and the uterus—both had to be removed—and once it hit the bones, everything just started spiraling downhill. During those last two months, she had seizures, lost her sight (even though the brain MRI came back clear, I guess that eye tumor was just causing too much trouble), constant pain, and she couldn't move. Her hearing faded too, and in those final two or three days, she wasn't able to speak at all.

It’s been four years since the diagnosis until the end. This coming May will mark one year since she passed away—I was only 24 at the time, and Mom was 49.

I get it—every time I read stories like this, it just hits home all over again. Hang in there—honestly, I don't even know what else to say. Just be there for her...

That's such an unusual pattern for the metastases to show up. I am so incredibly sorry about your Mom. Where was she treated?

Kate Diaz55 said:I haven't tried that tea myself, though I've heard people talk about it; honestly, I have no clue what the actual nutritional value is. For now, I’ve been doing half a lemon and a teaspoon of Sodium Bicarbonate every morning and evening. I struggle with digestion, and they told me this routine basically flushes everything out from top to bottom—hopefully keeping things clear. We'll just have to see. I’m giving my father-in-law whatever he can handle; I doubt it'll hurt him, and who knows, maybe it might actually help. I highly recommend Megestrol, but as for the rest, just go with your gut. Good luck, and like Ivanna says, try to stay positive—which, let's be honest, isn't always easy.

Check out this link:

I’m always holding out hope for a miracle... I know how this story usually goes. I went through all of this with my Mom (she passed away from ovarian cancer). Even though my father-in-law is in the terminal stage, anything is possible.

velvetviper4 said:Hey everyone,

Rodak—he's 30—was just diagnosed with Ewing sarcoma. It started in his pelvis and has already spread to his lungs. Apparently, the tumor is pretty massive, so surgery isn't an option right now because it's pressing against his heart. He’s starting chemo—has finished two rounds so far, with four more to go.
Please, if any of you have gone through this or have a loved one who has, we really need some advice. This is all brand new to us and we're honestly feeling a bit lost...

The plan is to use chemo to shrink that mass down—if things go well and the tumor responds, they'll move forward with surgery. I don't personally know anyone who dealt with Ewing specifically, but I do remember someone I knew with osteosarcoma who was also quite young. In that case, the chemo actually worked well at times—it managed to get the disease into temporary remission.

When it comes to sarcomas, you really want the top-tier specialists—here in the States, that would be Dr. Santek and Dr. Duke at the Rib Hospital.
Generally speaking, the golden rule for treating sarcoma is surgical removal; you want to get as much of it out as physically possible. With that in mind, the whole point of chemo is to shrink the tumor mass down to its smallest size before they go in. Unfortunately, we're dealing with a rare disease here, and these tumors are incredibly picky about which drugs actually work. They also tend to be stubborn when it comes to radiation and chemo, often finding ways to come back as a recurrence 😢
The best possible outcomes always happen through surgery, specifically when they can successfully remove the entire tumor mass.

Michelle Cook83 said:That's a really unusual pattern for metastasis. I am so sorry about your Mom. Where was your late mother treated?

At the Institute.

Hey everyone.... I don't really know how to start this, but here goes: my Dad—who actually had heart surgery about 20 years ago—suffered a massive heart attack. By the time the paramedics got there, he was already without oxygen. We have no idea how long it lasted. He spent a week in a medically induced coma, and now he’s in a vegetative state. He doesn't respond to his name, touch, or any other external stimuli. Every once in a while he opens his eyes, but not even every day. The doctors are slowly telling us to prepare for long-term care since everything else is stable (breathing, organs, etc.)... he also picked up some hospital bacteria, so he's on antibiotics now. I have a question if anyone knows... is there an institution in New York City—and I don't mean a nursing home—that takes people who "kind of" function but aren't conscious and whose condition is uncertain?
I've Googled just about everything, but my Dad needs specialized daily care... all these facilities and homes offer satellite TV, hair styling, and daily walks, but none of that matters for him. Does anyone know anything? Please let me know.

That feeling when your tests look amazing after four years, and you actually expect them to scale back your treatment. Then, someone decides to play games and—boom—total shock again. I ended up hospitalized with meningitis and lost my sight for a while (thank God it’s back now). There was nothing worse than lying there feeling completely helpless at twenty years old, having to rely on someone else for everything. Things are okay now; I've still got balance issues, some dizziness, and minor trouble with one eye, but I'm not giving up. It's getting better. 😁
Looking at people my age... I had a tiny window where I got to experience what a "normal" life outside a hospital feels like. I don't know, sometimes I just wake up, open my eyes, and realize I can still see. I get up, and I realize I can walk. The pain becomes secondary. Most people my age are just focused on going out and getting drunk—which, I guess, is pretty standard. Me? I just want to meet someone who actually understands those of us living with chronic illness, someone whose goal is simply to go out and see the world...
I honestly wonder if I'll ever find someone who will respect me, love me, and let me love them—someone we can both lean on when things get rough. Someone to share the highs and the lows with. It feels like nowadays, everything is just about having a good night out, or acting like everything is perfect as long as you're healthy. But the moment you need someone to make you tea, squeeze a lemon, or grab a tissue, people vanish—let alone when things get serious.
For us, every single day is a fight just to conquer the world. I just wish I didn't have to do it alone.

quietviper18 said:That feeling when your test results look fantastic after four years, and you actually start hoping they might scale back your treatment. And then—bam—someone decides to play games and you’re hit with a fresh shock. I ended up hospitalized with meningitis, which cost me my sight for a while (thank God it's back now). There is nothing quite like being twenty years old and lying helpless in a hospital bed, completely dependent on someone else. Things are better now, though I still struggle with balance, dizziness, and some minor issues with my vision. But I’m not throwing in the towel; things are moving in the right direction. 😁
Looking at people my own age... I had a brief window where I got to experience what a "normal" life outside a hospital looks like. It’s hard to explain. I wake up, open my eyes, and realize I haven't lost my vision yet; I get up, and I realize I can actually walk. The pain becomes secondary. Most people my age seem focused on getting drunk; I suppose that’s just part of being young. For me, I just want to find someone who understands what it means to live with a chronic illness—someone whose goal isn't just a night out, but simply seeing the world.
I honestly wonder if I’ll ever find someone to respect and love, and who will love me in return, so we can actually take care of one another when things go south. Someone to share both the highs and the lows with. It feels like nowadays, everything is superficial—life is great as long as you're healthy. But the moment you need someone to make you a cup of tea, squeeze a lemon, or just hand you a tissue, everything falls apart, let alone something much more serious.
For us, every single day is a battle just to claim our place in the world. I just wish I didn't have to fight it alone.

Try to keep looking forward.
I have a colleague with multiple sclerosis who deals with vision and balance issues, yet he managed to find a woman who loves him, and they just had a baby.
I truly hope you get to see your wishes fulfilled.

Everything is spiraling out of control, as > would say. My mother-in-law had a really hard time handling her 7th cycle of Temodal. Things seemed to have stabilized for a moment, but last night it was just constant vomiting, headaches, high blood pressure, total exhaustion, and cramping in her fingers. My husband and son went to pick her up this morning and they're heading straight to Mexico. In the meantime, we just got the MRI results back, and apparently, the tumor is back—and it’s massive. I’m fully aware of the diagnosis and the prognosis, but I guess you can't help but hope when she was approved for those 6 extra cycles and it felt like the beast was finally calming down. Now, in less than a month, every single symptom she had before surgery has come rushing back. It’s all happening so fast and so cruelly. It’s been exactly a year and two weeks since the surgery. This uncertainty and waiting... it's killing me. I just keep hoping they can help her. Sending my best to everyone on this thread, whether you're here for yourselves or for your loved ones. Even after the first MRI, the neurosurgeon suggested that a second surgery might just be "futile" because the tumor has started spreading into the centers for speech, vision, and movement. He even said that if he were in our shoes, he wouldn't touch it again. What are you even supposed to do? It's impossible to feel wise right now. I think I'm going to lose my mind from the worry and the suspense. It’s just so hard when there isn't any hope, and maybe there never really was.😢

Dear Alma, I’m so sorry... it looks like your situation is proving once again that Temodal is really just a mediocre drug that only shows any real teeth when it's paired with radiation. Once you move past that, there’s nothing left in the tank.
You guys are going to have to start making some real arrangements because we're looking at entering the terminal phase of this illness. At this point, the only thing that can truly help her is palliative care, just to ensure she can live out the rest of her days with some dignity.
Hang in there. 😢

quietviper18 said:That feeling when your labs look amazing after four years, and you’re actually expecting them to scale back your treatment. And then—boom—someone plays fast and loose with the protocol and you're hit with a fresh shock. I ended up hospitalized, lost my sight (which has since returned), and dealt with meningitis. Just lying there, completely helpless in a hospital bed, having to depend on someone else when you're only twenty. Things are okay now, but I still deal with balance issues, vertigo, and some minor vision trouble. But I'm not giving up; things are looking up. 😁
Watching people my age... I had a brief window where I got to experience a "normal" life outside the hospital walls. I don't know. I wake up in the morning, open my eyes, and realize my vision is still there, then I get up and realize I can walk. The pain becomes secondary. Most people my age have their sights set on getting drunk; I guess that’s just what "normal" looks like. I just want to meet someone who understands those of us living with chronic illness—someone whose goal is simply to see the world...
I honestly wonder if I'll ever find someone to respect me, love me, and for whom I feel the same—someone to lean on during the crises. Someone to share both the highs and the lows with. It feels like everything today is just about one night out, or everything is "perfect" as long as you're healthy. The second you need someone to brew tea, slice a lemon, or bring you a tissue, everything falls apart, let alone something much worse.
For us, every single day is a fight to conquer the world. I just wish I didn't have to do it alone.

Honey, I can't truly compare my situation to yours because I haven't been sick, but listen to my story:
I spent basically my entire youth picking the wrong guys. I was convinced I was destined to be alone forever... right as I finally escaped a toxic relationship and felt like I just wanted to die, I found out my mother was terminally ill. My whole world just collapsed. My mom and I had never really figured out how to communicate properly, and just as we were starting to bond, this happened. I blamed myself, thinking maybe it was happening because I had wished for death... and then began those months of absolute misery and depression for both her and me. I was teetering on the edge of anorexia. I remember lying in bed one night, shaking and crying, and I just started talking to God. I said, "God, You know me, and You know I can't do this alone. Please, send me someone. I won't survive this by myself." In my head, I pictured someone wonderful and kind coming along soon... and they did. We met online, totally by accident, without any intention of dating or meeting anyone that way. Here I am—someone who used to go out and party at all the coolest spots—meeting the man of my life in a way I always thought was incredibly stupid. Misfortune brought us together. After a few months of dating, he moved in with us. It worked out because my mom's job involved working on ships, and he was there to help her. He’d rush home from work to help lift her off the floor when she fell. My mom even gave him my grandfather's buttons as a wedding gift; she gave me her blessing to stay with him, and when she passed, he was the one who helped me wash and dress her... we truly went through everything together. Our relationship started in circumstances that would make most people buckle. We got married, we have two beautiful kids, he's a great husband, and an even better father.
...don't be afraid. There is someone waiting for you on your path—someone you might actually recognize *because* of your condition. Life sends us unusual but highly functional filters that we often miss because we're too distracted by what "normal" is supposed to look like.

Ethan Gonzalez39 said:Hey everyone... I honestly don't know where to start, but here goes: My dad, who actually had heart surgery 20 years ago, suffered a massive heart attack. By the time the paramedics got there, he was already without oxygen. We aren't sure how long it lasted. He spent a week in an induced coma, and now he’s in a vegetative state. He doesn't respond to his name, being touched, or any other external stimuli. Occasionally he opens his eyes, but not every day. The doctors are slowly telling us to prepare for long-term care because everything else—his breathing, his organs—is stable. He also picked up some hospital-acquired bacteria, so he's on antibiotics. I have a question if anyone knows... Is there an institution in New York City, that isn't just a nursing home, where you can pay for specialized care for people who "seem" to function but aren't conscious and whose condition is uncertain?
I've googled everything, but my dad needs specific daily care... all these facilities and homes offer satellite TV, hairdressing, and daily walks, but my dad doesn't need any of that. If anyone knows anything, please let me know.

Most private facilities include 24-hour skilled nursing as part of their standard services. Just because they offer extra perks doesn't mean they can't provide the specific medical necessities a resident actually requires.
Sit down, pick up the phone, and go visit the ones that look like the best fit for your situation.

Maybe there’s still a glimmer of hope out there for those who can actually afford it when fighting GBM. This morning, a link popped up in the glioblastoma support group on Facebook about a potential "cure" for this brutal disease. Of course, the treatment is strictly experimental, but honestly, looking through the data and watching the footage, I found it hard to believe how much of an impact it's having on patients. If anyone's interested, feel free to check it out. A lot of people in the support group were practically begging to be test subjects for Duke University in the US.
I'll try to post the link if I can get it to work.🙂

http://www.cbsnews.com/news/polio-ca...-scott-pelley/

Now for some of the bleaker news. My mother-in-law's MRI results are bad; the tumor has spread to the right side. Her oncologist actually reached out to a different neurosurgeon because we can barely get a straight answer out of her primary physician. In fact, the surgeon didn't even perform the procedure himself—it was his resident, who, thank God, did a decent job. But honestly, what else can you expect from the medical system in a place like New York, where surgeons seem more interested in playing politics and lining their pockets than actually caring for patients? I suppose most people on this forum already know that. Anyway, there's no point in any further surgery; they’d likely do more harm than good at this stage. She's been started on Dekson 3X at 4 mg, along with Ranisan for her stomach twice a day (that was the neurosurgeon's call).
Her oncologist is already suggesting palliative care, though she claims we aren't quite there yet. She wants to be accommodating, so she's advising that the Dekson should be administered via injection—8 mg in the morning and 4 mg in the evening—because apparently, the tablets are just too harsh on the stomach. Despite that, she insists we push through with chemotherapy; the next round is scheduled for April 1st, just to see how much longer she can hold out. That "holding out" part is what scares me, because I suspect her last chemo session caused an edema that triggered this rapid decline. Up until now, she hasn't had any dex or Dekson for the entire year, because according to them, she didn't need it.
The effect of the Dekson was almost immediate the very next day; she was suddenly revitalized, even walking to the bathroom on her own, albeit with a healthy dose of anxiety. She's eating better and sleeping less. She does slur her words sometimes, repeating questions, and occasionally loses her sense of direction, the time, the date, or even the season. But overall, she isn't complaining about pain, except for her knees—especially the left one.

It wasn't Temodal that created Eden; it was the tumor. It’s clear Temodal just isn't doing the job anymore, though the doctor is still holding out hope for some kind of late-stage reaction. As for the doctor, you can rest easy—he's working incredibly hard and truly cares about his patients. Temodal is an expensive drug, too. I'm not sure if the Social Security Administration covers it here in the States, but they do back home. If she actually has coverage for this, she’s honestly living like royalty because she could have easily said "enough" after that first round of radiation.
Regarding the Dex and the injections, the combination of shots and pills felt like the best way to go for us. But man, those injections are brutal. I took three and my backside was sore for days. Just imagine having to jab someone multiple times a day... I would have lost my mind. It definitely takes a toll on the stomach, but Peptoran helps protect it. My Mom had a super sensitive stomach her entire life and never once complained about it causing issues.
To be honest, when it comes to another dose of Temodal, I’m afraid it won't make a difference. You all need to sit down and have a real, blunt conversation. With a tumor like this spreading without surgery being an option, there isn't going to be an improvement, and for some reason, surgery clearly isn't on the table anymore. Maybe try seeking a second opinion at a major center like Mayo Clinic or somewhere in New York... I am truly sorry. 😢

Angela Wright said:I guess Alma didn't get edema from the Temodal; it’s likely the tumor itself, especially since the Temodal doesn't seem to be doing much anymore. But hey, maybe the doctor is just hoping for some kind of late-stage reaction. Honestly, regarding the doctor, you can rest easy knowing she is working truly conscientiously—she really does care about her patients. Temodal is an expensive drug, too. I'm not sure if the Social Security Administration covers it here in the States, but they do back home. If it is covered, then she really is living like royalty, because she could have easily said "enough" after that first round of savings. As for the Dex and the injections, for us, the combination of shots and pills felt like the best way to go. Those injections are absolutely brutal, though. I took three and my backside was aching for days. Just imagine having to jab someone multiple times a day... I think I would lose my mind. It definitely puts a strain on the stomach, but Peptran helps protect it. My Mom had a super sensitive stomach her whole life and never complained about anything being too harsh. To be blunt, regarding one more dose of Temodal, I fear there won't be any benefit. You all probably need to sit down and have a very honest conversation. With a tumor like this that spreads without surgery, there isn't improvement, and clearly, surgery isn't an option for her anymore for whatever reason. Maybe try seeking a second opinion at the Mayo Clinic or somewhere in New York... I am truly sorry.
What about the Dex and the injections? For us, the mix of shots and tablets seemed like the most effective combo. The shots are honestly miserable. I had three and my rear end was sore for days. Imagine having to inject someone several times a day... I’d probably go crazy. It does take a toll on the stomach, but Peptoran seems to help protect it. My Mom had a really sensitive stomach her entire life and never even complained about anything bothering her. In all honesty, regarding another dose of Temodal, I'm afraid it might not do any good. Everyone should probably sit down and have a real, open talk. With a tumor that spreads like this without surgery, there's no improvement, and apparently, surgery isn't an option for her anymore for some reason. Maybe seek a second opinion at the Mayo Clinic or in New York... I'm really sorry.
😢

Well, seeking a second opinion feels like a waste of time; three neurosurgeons in the city already said surgery would be futile and would cause more harm than good. I know Temodal shouldn't cause a reaction like that, but since it happened while she was taking it, I was terrified it was a side effect—I almost wished it actually was.😢 Temodal is provided through Social Security, so the costs are covered. The doctor wants my mother-in-law to continue receiving Temodal under strict supervision for at least two more cycles; she has six approved in total, so she has five left. Maybe the doctor is hoping, just like we are, that the tumor might slow down or settle a bit. Lately, while she's been on the Dex, she hasn't had any stomach issues, mostly because I give her Ranibos in the morning and at night, and she drinks yogurt with probiotics. As for sitting down and talking... well. My father-in-law is away from home, out of town, and once he heard about the MRI results, he just keeps paying the bills; I'm actually worried about his health. She and her sister are completely lost right now—they don't even know what to do next. We knew what we were up against from the start, but it still hurts when things begin to unfold in this "ugly" sequence. I just want her to be out of pain. We'll see about the Dex; maybe she'll do the injections first and then switch back to tablets later. Thanks for the support and the advice. I read every word you say and I feel for all of you. Good luck to everyone!

We’ve been cleared to start another round of Temodal, though the oncologist advised us to monitor her condition constantly. If we notice anything even remotely suspicious—changes in behavior, bruising, vomiting, you name it—we need to reach out to her immediately. For the time being, she’s sticking to dexamethasone at 3x4mg along with Ranisan. Regarding his situation, the doctor mentioned we need to be extra careful to prevent him from vomiting blood, as he’s having a really hard time tolerating it (dex). If everything goes smoothly with the Temodal, she mentioned moving on to a different treatment plan. She actually forgot the specific name of the medication, but I don't blame her; we're all a bit of a mess right now. We'll give it a shot, though, because she says there’s nothing left to lose. Honestly, since starting the dex, she seems to be doing better; she can manage on her own without our help, and her appetite has actually improved, which is a small miracle. Her mood, however, fluctuates just as much as the weather here in New York City. One minute it's sunny, the next it's overcast.🙂She still has those moments where she gets lost for a second, not knowing what time it is or where she is... but I guess we've just gotten used to it by now.😢