157 posts shown.
Angela Wright said:My mom passed away peacefully this morning.
Thank you all so much for being there for me during one of the hardest chapters of my life.
Love you guys! May God bless you all in your own struggles. Just keep pushing forward.
Angela Wright, I am so incredibly sorry for your loss. Just know we’re all thinking of you.🙂
abuxl, do you happen to know anything about leg cramping or twitching related to GBM? My mom is struggling with it right now, and I'm honestly at a loss for how to help her. I won't be able to check with her doctor until Friday. Is it worth noting that we recently dropped her dexamethasone dose from 8mg down to 4mg?
slyseal28 said:In my earlier posts, I mentioned I was working on a site about cancer. Well, the site is pretty much live, and I’d love for you guys to take a look and give me some feedback. As for the content—I don't have every single disease covered yet since I'm still gathering data. If anyone wants to help out with advice or even some harsh criticism, just hit me up.
http://www.carcinoms.com
The site is optimized for Internet Explorer 7 or Mozilla Firefox
Congrats to everyone who put work into this website! Nancy Hernandez43, I'm glad things are looking up for you 🙂 just keep doing what you're doing!
Angela Wright said:Look, there’s a bit of everything out there.🙄 My own experiences have been pretty much a disaster, especially when dealing with specialists.
Aloa might be viewed by mainstream medicine as just another supplement, just like native propolis, but she was using something administered via injection. Because of that, you can't just lump it in with standard eye supplements. Honestly, I can only imagine how ridiculous her reaction was when she was acting all clueless about the native propolis.
I dealt with two different specialists who basically gave me the eye roll and told me not to throw my money away when I asked about using beta glucan. But here's the kicker: the fact is, it actually helped her bloodwork improve enough so she could finally get back to her chemo treatments. Now, she's on beta glucan constantly, and her blood counts are right back within the normal range. So, yeah—maybe it's better not to bother asking doctors at all.
Carol Ramirez said:...
My mom is my entire world, honestly. Right now she’s going through a gauntlet of hormone tests because of hypothyroidism, and it’s pretty clear her whole system is just crashing. She’s exhausted, stressed out, and emotionally fried. It’s like everything in her body slowed down—her heart, her lungs, even her digestion. But does she stop? Nope. She keeps grinding at work because they’re in the middle of some massive audit at the firm, and she’s carrying most of the weight. She’s completely forgotten how to actually relax or take a breather. Any free time she gets, she spends hunting for chores to do around the house. She doesn't even engage with the things she used to love anymore; she’s lost interest in everything. She can't even tell me what her favorite food or drink is anymore because nothing sounds good. Everything is just a mindless routine. I can't even treat her to anything special because whenever I ask what I should cook for her, she just freezes up. She genuinely can't think of anything—she'll just eat whatever is put in front of her. 🤷
You really need to try and push her to snap out of this before things get worse... If she keeps neglecting herself like this, who knows what might happen. I constantly wonder if she’d be healthier right now if we had been more insistent on her taking care of herself back when she wouldn't listen. She’s always put everyone else ahead of herself. That's not how you're supposed to live!
And get this—when my grandpa heard Mom was sick, he was already a bit out of it, kind of drifting in his own world, and he told us he’d gladly volunteer to take all her illnesses onto himself. I swear, I froze.
Carol Ramirez said:Hey everyone, hang in there!
Things are hitting a breaking point on my end. My grandpa is facing surgery with a pretty uncertain outcome. A tumor is starting to block both of his bronchi, and he’d be suffocating soon if we didn't step in. They managed to stop some bleeding yesterday—his mouth was literally filled with blood—but even then, he was still cracking jokes, acting like he hadn't just gone through 🙂
The second crisis is my mom. This past week has been a total gauntlet: a mild heart attack, angina, thyroid cysts, and breast cysts. To top it all off, her brother passed away a month ago, so she’s spiraling into depression on top of everything else.
Just great!! 😉
Miraculously, I can still think straight. My partner is an amazing cook, so I'm at least eating well. I'm struggling a bit with insomnia, but a hot bath, some lavender, tea, and tossing and turning for a few hours eventually knocks me out. 🤣
I am so sorry you're dealing with all this, Lecka.
The way you're stepping up for your grandpa is honestly incredible. We have a sick grandpa too—my mom's dad—but he's kind of fallen to the sidelines since my mom got sick. We simply CANNOT keep up with giving him the attention he needs... Mom used to be his primary caregiver back when she was healthy. He's been immobile for a few years now and is staying in an assisted living facility. He survived sarcoma and finished treatment three years ago, but things haven't improved since. I feel for him, but I find some comfort in knowing he lived a full life and at 85, he can pass away peacefully. Unlike my mom...
Ivanicapeca, did you get any rest? How's your dad holding up without you around?
Elizabeth Collins60 said:Hey everyone, I'm a little out of the loop... sadly, we lost another one to this awful disease. My dad passed away on Sunday, October 21st, 2007, at 1:30 PM.
I am so incredibly sorry, Mia. I really hope you and your mom can find some peace and start healing soon, no matter how heavy things feel right now.
Nathan Bailey, it’s good to see you pop up here. I was actually scrolling through your old posts earlier wondering how your husband was doing.
Best, Dan 🙂
Anonymous said:brightgardener8, look, basically (thank God 🙂) things are okay. She’s hanging in there, and she just finished her third cycle. She’s heading in for a checkup at the beginning of November—though we're still playing it by ear because if they decide she needs a fourth cycle right away, it’s going to be a massive headache coordinating that since she has to fly all the way to New York for the appointment (that's a 5-hour flight one way). Her bloodwork is relatively decent, even though her white cells, red cells, and platelets are all down, and those liver enzymes are up—but the doctors think it's fine and she can push forward with the treatment. Honestly, during the actual treatment phase, she doesn't move from the bed; she feels miserable and can't eat a thing. But then, about 4 or 5 days after the therapy, she'll head out with some music playing, leaving the house around 10 AM and coming back around 5 or 6 in the evening... just walking, driving around, that kind of stuff. Sometimes they'll sneakily grab a pizza—and that’s pretty much how it goes until the next session 🙂 mostly. Between cycles, we try our best to help her get her appetite back, regain her strength, and put back on the weight she loses during treatment, while also trying to let her liver recover and stabilize her blood counts. That’s basically how we live from one cycle 🙂 to the next 🙂 cycle 🙂... anyway, how is your mom doing?
Angela Wright, I read your posts all the time—they’re always there to offer comfort and strength—but 🤷 I never seem to see an update on how your mom is holding up?
Mom finished her third cycle of Temodal on Wednesday, and man, she felt nauseous for all five days. Even though she’s clearly struggling, she keeps insisting that she
doesn't feel bad at all👍. Honestly, that's the only thing keeping me from spiraling right now. Of course, she’s still nagging us to leave her alone. She has absolutely no clue how much she actually relies on us.
Yesterday she had some burgers; just mentioning burgers brings this huge grin from ear to ear. We don't want to be the "food police" if it makes her happy. She lost so much weight already, so now the goal is to get those pounds back. It almost feels like the responsibility for her gaining weight falls entirely on us, because once she starts eating, she has a killer appetite. She clears everything on her plate; sometimes we joke that she’s going to scrape the color right off the ceramic.😁
slyseal28, congrats! Just keep doing what you're doing.
Linda Campbell said:Honestly, I have no clue. I spend every waking hour, day and night, just spiraling over all of this. I fought this exact same battle twice—once eight years ago with my dad, and now with my mom. Both times, I lost. Back then, I still had my mom around to lean on, so I managed to pull through. But now? I’ve got a husband and a kid, but without my mom here, everything feels impossible. I don't know what the point of these struggles was or what I was supposed to learn from them. Because honestly? I didn't gain anything. I just became a completely different person. I used to be this incredibly happy, upbeat, energetic, and driven person. Now, I’m just deeply sad, anxious, withdrawn, and totally disillusioned with friends, family, and everyone in between. I walk around with my head down, which just wasn't ever my style. And yeah, I "gained" a nervous breakdown, gastritis, CIN 1, E. coli, insomnia, a prescription for Xanax, and this constant, paralyzing fear for the health of my kids and my husband... In two months, my mom will have been gone for a full two months, and there isn't a single hour that goes by where I'm not obsessing over it all—especially how much she suffered. There's this one thing I just can't shake: I can't stop wondering what her final thoughts were, since she was conscious until her very last morning... It's going to eat me alive. Truly, I gained absolutely nothing from this.
I was actually wondering how you were holding up—have you even had a chance to catch your breath physically after losing your mom? I'm sorry that the answer isn't more positive. Some people claim they find a "silver lining" in these horrific situations, but for some people—and honestly, for me too—that just doesn't happen. I just want you to pull through, however long it takes, and I hope you can eventually find a way to focus on your own health.
I am so incredibly sorry for your loss.
Hey everyone!
After three attempts and 17 days of delays, Mom finally got the green light today to jump back into chemo. We’ve been struggling with her blood counts; nothing seemed to be moving the needle. We decided to give Beta glucan a shot, and honestly, it looks like it's actually working. So, we start the third cycle tomorrow... I know the nausea and vomiting are going to hit hard, but that's just for five days.
Regarding the adult diapers—for those of you who've dealt with this, how long does it actually take to get everything approved once you submit the request to the primary care doctor? Are we talking days, weeks, or months...? We aren't quite at that stage yet, but I refuse to just leave things to chance. A friend of mine whose grandmother has Alzheimer's mentioned they were waiting for months (?!).
Wickedangel, Christian Wood63, Apple22, Bednkacin... how are you guys doing?
I could really use some help from you guys if we can try to put together a master list of all the different types of assistance a sick person is actually entitled to, based on the posts from yesterday. I’ve read through everything, but I’m honestly not sure if I’ve grasped all the details correctly.
It would be great if you could write down the exact name of the "service" and how you actually go about getting it.
I can start with what we’ve managed to pull together so far.
1. A nurse who comes by every single day to administer injections (we handed over all the medical records to her primary care physician, so it went through one of their committees)
2. A ruling for 100% disability (we submitted the request along with all the medical documentation to the Social Security Administration, at the Company location); the result is being exempt from co-pays and administrative fees—someone please explain to me exactly what those are—plus a bunch of perks related to vehicles, but that's not my main focus right now...
3. ...
You guys mentioned a nurse for caregiving, but what does that actually entail? How much time per day are they there for? Does the patient have to be completely immobile to qualify? Are we talking about a home health nurse?
Sorry people, I have a hundred questions. My mom’s primary doctor is such a total hack that he hasn't helped our situation one bit so far; if anything, he's made things worse by writing incorrect referrals and withholding information.😈
We ended up hiring a woman to watch over Mom ourselves, paying her out of pocket, obviously.
Melissa Kim45, how is your mom doing when it comes to mobility?
Man, what you’re writing is awful, but somehow you still make me laugh. Here’s an example of what happened with us yesterday: I call Mom on her cell while I'm at work; the phone is off. I get pissed because we constantly nag her that the phone MUST always be on just in heaven forbid something happens. I call the landline. She picks up and we talk for a second, and I tell her, "Put your phone on the charger and TURN IT ON (because even that seems to be an issue)," thinking she'll do it right after we hang up. Instead, she drops the receiver and just walks away. I wait for her to come back, but she doesn't. I call the cell—still off. I call the landline—the line is dead because the receiver is still off the hook. For the next ten minutes, I'm calling back and forth, already picturing myself having to drive over there just to hang up the phone for her. After the hundredth attempt, I finally get through to her cell because she actually managed to turn it on.🙂
Elizabeth Collins60 said:My dad’s been doing absolutely terrible these last ten days; he’s completely lost his grip on reality...
Things haven't hit that critical breaking point for us yet, but I know exactly what you're talking about. We went through similar episodes with my mom, where she’d accuse us of starving her or trying to control her life and stop her from living. Of course, that was just her subjective perception of the mess her illness had made of things. Honestly, it's a small comfort knowing she isn't in physical pain and that she actually has NO clue how bad things really are (even if her insisting on doing stuff she physically can't do anymore drives us straight to the brink of insanity...). I’m stuck wondering how to explain to her that she simply can't do certain things without being totally harsh and making everything ten times worse. When I ask her if she feels like anything has changed in her life lately, she just shrugs and goes, "Nope." 😱 She’s talking about climbing ladders, vacuuming, or working in the garden, when in reality, she can barely stand up without wobbling; any kind of household appliance is basically an enemy to her now (she can't tell time, doesn't know how to use a remote or a cell phone, and we had to cut off her access to the savings account a long time ago...). Finding the right balance in all of this is incredibly tough.
Hang in there, everyone. Don't let it get to you.
Lawrence Rogers56 said:Respect, and I am truly sorry for your loss.
I actually buried my own father this past Tuesday, October 9th, 2007.
My condolences. Man, it feels like there’s just one death after another lately... I'm really sorry.
Hey guys, does anyone know of any "old school" home remedies to help fix blood counts? My mom can't move forward with her chemo because her white blood cells, platelets, and red blood cells are all bottoming out. Her doctor basically just shrugged and said his hands are tied. Ugh.
Angela Wright said:Nah, this guy is straight out of Mexico.
Yeah, my bad. I was just skimming through it and totally missed that we were actually talking about Mexico specifically...
Anonymous said:I was actually up in New York City visiting my aunt when we made that call. He already had someone lined up there who could get it delivered by tomorrow. It cost me about $160, if I recall correctly. Honestly, just give it a shot—since he ships to Canada, Germany, and all over the place abroad, getting it delivered here to the States shouldn't be an issue. Good luck.
Mexico
Mexico,
owner Mexico
+1 212 555 0198;
+1 212 555 0122;
www.biocil.com
Is this the specific medication you guys are talking about? I saw some posts about it about four months back (page 28).
Karen Fox36, radiation doesn't really cause nausea. They usually bundle those things together with chemotherapy.
As for burns, my mom went through all 30 sessions without any major issues. Her ears peeled a little bit, but that cleared up fast once she finished treatment. She lost her hair about halfway through the process.
I’m so sorry, Angela Wright.
Angela Wright said:Mom is having a slightly better stretch right now, mostly because she’s actually eating well. She even seemed interested enough to watch some TV for a bit.
Things are getting tougher on our end. Her mental faculties are slowly slipping, and it feels like every single day we realize there's one more thing she just doesn't know anymore...😢 Physically, she’s definitely weakened, though we haven't seen any sudden massive crashes yet.
Christian Wood63 said:Come on, please try to remember—did that happen before she started Temodar, or while she was actually on it?
And did she run any weird fevers, or were you feeding her something new that wasn't part of her usual diet?
I need to compare notes because my mom’s been acting super drowsy the last few days. Luckily, she snapped out of it once I switched her over to an IV drip of Mannitol. She’s still a little lethargic, but at least she’s got some spark back. I had been giving her some new mushroom supplements, Vitamin C, and stuff like that...
I'm pretty sure it happened after the first round of Temodar. She didn't have a fever, and I hadn't changed anything in her diet. Like I mentioned before, her Dexamethasone dose had been dropped down to 2 mg a day at that point. Once we bumped it back up to 8 mg, she was doing fine. So, it was probably the dosage drop that did it.
P.S. I'm a girl! 🥳
Christian Wood63 said:So, go ahead and describe just how "terrible" she was feeling for me...
This all went down almost two months ago. One day she’d be totally fine, and the next, she could barely even stand up. She could hardly sit, let alone keep her eyes open, and talking was a massive struggle. She basically slept through the entire day. But then, after we bumped up the dexamethasone dose, she practically snapped out of it the very next day, like nothing had even happened. We had another episode this month, though it was a bit milder. It all played out over about 8 or 9 hours. By evening, she was back to herself again—and we didn't even increase the dexamethasone that time.
We were at a checkup today; she was supposed to start her third cycle of Temodal tomorrow, but they can't move forward because her blood work looks bad. Her blood counts are way too low...😢
Could that be caused by this?
Christian Wood63 said:Look, if you're worried about the liver, just take some Vitamin C along with Reishi mushrooms.
And maybe chill out on the Tahitian Noni if they're already taking that...
People say it's great for liver health, but honestly, regarding corticosteroids? I’d ditch them entirely and just stick to your standard, everyday anti-inflammatories. You obviously have to taper off the dexamethasone gradually, though... right?
What exactly are these "standard anti-inflammatories" you're talking about? And why wouldn't an oncologist just prescribe those instead of dexamethasone—which, let's be real, is effective at fighting edema but absolutely wrecks your liver and everything else in the process? 🤷
Our situation here in the States was a total nightmare when we tried dropping my mom down to 2 mg of dexamethasone; she's back up to 8 mg now, so we're basically just riding the wave...