rustyscout31, check your DMs, I sent you a few things there.
Amy Hayes28, man, I am so incredibly sorry. Hang in there... stay strong... 🙂
My mom’s latest results—the colonoscopy, the blood work, and that CT scan—are actually looking okay... Well, mostly. They did find these two tiny little nodules on her liver, unknown cause and all that, so I’m trying not to get my hopes up too high, you know? But honestly, they're so microscopic the doctors couldn't even get an actual measurement on them, and since there’s also one larger cyst involved (which looks similar on the scans), we're just praying they turn out to be nothing more than simple cysts... We're going to try to just take it easy and decompress until May when she has to go back for more testing. Still, it feels like a bit of a weight has been lifted...
Susan Diaz91, I totally remember that gut-wrenching feeling when the doctors start dropping hints and then a diagnosis hits you like a ton of bricks. Eventually, you just learn how to live with it, how to fight it, and you realize that everything isn't quite as dark as it felt in that first terrifying moment... and that there is still so much you can do... Just dig deep, find your courage, and keep moving forward! Be strong, for your mom's sake. Susan Ruiz76 put it perfectly. ... and, hey, keep that baby in your thoughts. 🙂
Elizabeth Gonzalez55 said:To be totally honest with you—it's scientifically proven that chemotherapy just doesn't work when it comes to melanoma...
I feel terrible—I had no idea... but look, it’s not all over yet—there are still ways and methods out there for Kyarin's grandpa. I really hope things are looking up for you guys right now, Elizabeth... I'll shoot you a private message in a bit...
Anyway, my mom's markers are mostly normal, though her CEA bumped up compared to the last test she had about 6 or 7 months ago (it was at 2.9, and now it's 4.5), so I'm definitely feeling a little anxious about it. Has anyone dealt with something like this before? The CT results come in on Monday...
Sandra Rogers48 said:He’s 70... doesn't have much time left..
Don't say things like "he doesn't have much time left." My mother is going to be 66 in two months and I really hope she's around for a long, long time! Sure, maybe she handled chemo a little easier than your grandfather did, but honestly, I truly believe this is just a rough patch for him and he'll pull through... I was reading online that how someone reacts to chemotherapy doesn't actually dictate whether the treatment works or not, so please don't let how you're feeling right now get you totally discouraged. By the way, my grandmother lived to be 93, and in my family, the women traditionally live pretty long lives... which is why Mom's illness hit me so hard, it was such a shock :-(
What is your grandfather saying about all this? If he still has that spark, that will to fight and try, and if a few months of suffering means (hopefully) a longer life, then I think it's worth trying—especially if we can look forward to better quality of life without the chemo later on... Though, knowing Lothar H., he probably wouldn't even agree with that...
...anyway, I haven't been posting much lately. We're just sitting here waiting on the results from Mom's CT scan and her blood work, so I'm, to put it mildly, a total nervous wreck...
And I'm sad... just incredibly sad because of Dina, and everyone else too... there are no words... I think I'm going to find myself rereading her posts whenever I feel like I'm losing my courage or my drive to keep going. Honestly, my heart goes out to everyone who knew her and to those of you missing her even more. May she rest in peace up there...
Timothy Murphy5 said:Man, thanks so much! 😍 It's seriously tough finding anything out about him, I mean, there isn't even a single mention of his name on any of the forums around here, and since I'm actually thinking about booking an appointment, I've been trying to dig up some kind of feedback...☕
You're totally right—there's basically nothing online or on the boards, but honestly, a good reputation travels fast enough even without the internet... 😁 Your best bet is just to give them a call first (if you can't find the number, shoot me a DM and I'll send it over) and then just get yourself in there as soon as possible if you need help.
Donna Hughes13, look, the stuff you’re describing sounds pretty heavy to me and honestly, you really ought to go see a doctor ASAP—like, if you can swing a specialist gastroenterologist right away, just do it! You mentioned yourself that things feel blocked up, and that "dark liquid" in your stool... man, that could seriously be blood, which is nothing to mess around with. You really need to get checked out, maybe do some lab work or even a colonoscopy just to be safe... I don't mean to be rude or pry, but if you don't mind me asking, how old are you? Lately, my own family has been dealing with a ton of gut issues—my 😢 is still struggling with it too, so maybe I’m just being an overreacting mess, but the whole point is that things could have been way less stressful if we hadn't ignored the warning signs and actually gone to the clinic immediately! Don't put this off! I mean, hey, maybe it turns out to be nothing at all, but at least you won't be sitting there worrying about it... I'm pulling for you!
I’ve been hearing nothing but glowing reviews from pretty much everyone I talk to... My father-in-law actually went in recently too, and man, he was beyond thrilled with how they handled everything and the whole vibe of the service... plus, let's be real, it didn't exactly kill him—apparently, the doctor has a real magic touch 😁
Ryan Sanders49 said:Hey everyone, hope you're all doing great... Quick question for the group: I’m living out in the middle of nowhere right now, just stuck in the sticks, so I was wondering if anyone could point me in the right direction... where can I actually track down some KUZU powder and those umeboshi plums? It's getting harder to find the good stuff when you aren't living in a major hub like NYC...
So, you're looking at those organic health food stores... though, honestly, I haven't a clue if there are any actually located near New York City... I'll shoot you a private message with a link that might help you dig up some more info...
Nancy Hernandez43 said:We aren't dealing with any diarrhea issues yet, but I'm curious where you pick up that tonic and those plums?
I really hope this isn't just all hype from some commercial—anyway, I get the mugwort and the umeboshi plums (along with the shiitake, tamari, miso... and all that other stuff, mostly because a macrobiotic consultant suggested it) at Whole Foods markets. Honestly, I wish they had some actual competition around here because the prices are getting pretty ridiculous. Some items are stocked at Sprouts too, though I haven't checked out that newly opened Garden yet... I mean, who knows how much of a difference a macro diet will actually make, but I guess we're pinning our hopes on it... With that kind of eating, it’s pretty much impossible to put on weight, too. A while back, this lady on the forum (sending her my love 🙂) convinced me that the number on the scale doesn't matter nearly as much as how the patient is doing overall, so we try not to sweat the small stuff. Mom, on the other hand, keeps cracking jokes about her new waistline, while I just end up handing her my pants because they're way too big on me now...
I honestly feel like, in my own experience, just sticking to echinacea drops worked wonders as a preventative measure. You can find them from tons of different brands, and sometimes you can even grab some that are blended with propolis too... The market is just absolutely flooded with immune boosters these days. I used to be one of those people constantly popping various multivitamins and Vitamin C tablets, but lately, I’ve been leaning way more toward natural—or at least, what feels more natural—remedies. Like, I'll make this broth with garlic and ginger simmered right in there. Apparently, ginger is supposed to be great for clearing out your sinuses. I'm sure there's a million other old-school home remedies floating around out there somewhere... I actually heard this sponsored segment on the radio bragging about how effective BioBran is for boosting your immunity (though in my house, we end up using it for much more complicated issues than just a stuffy nose, unfortunately)—so it might be worth a shot, though you have to be ready to pay a premium for it... Anyway, it's always better to prevent... 😬
Happy New Year, everyone... wishing you all so much strength and nothing but wins in your fight against this sickness!
My mom wrapped up her chemo sessions at the end of last year, and now we’re just sitting around waiting for those first deep-dive tests at the beginning of February (MRI, blood work, markers, the whole nine yards) We’re trying our best to stay chill, but honestly, the fear just kind of crawls under your skin... I can't help but wonder why the oncologist scheduled everything for two and a half months after the last round of chemo... why wait that long? And why aren't they doing a PET scan right away? Plus, while she was going through chemo—which left her dealing with constant diarrhea—she dropped about 5 or 6 pounds. She hasn't put any of it back yet. It doesn't seem like it's gonna be an easy fix. But, she seems to be doing okay (or at least, that’s what she tries to make us believe...) I think I might have mentioned this to Nivija before, but maybe someone else here can use this tip regarding the diarrhea situation we finally cracked recently. We found that Kuzu powder (the stuff that usually thickens soups) actually helps quite a bit. Lately, I've been making her this drink with Kuzu and umeboshi plums, which is supposed to be great for gut health. It’s all macrobiotic stuff, but I read that plenty of moms even use Kuzu to help stop diarrhea in babies...
Nivia179 saw my mom dealing with brutal diarrhea after every single chemo cycle. Sometimes it would last just a day, but other times it dragged on for five days straight... she tried sticking to more rice—you know, brown rice, boiled in a pressure cooker for like 50 minutes until it’s basically mush—and she’d stir some cornstarch into her broth to thicken things up. I don't know if it'll actually make a difference for you, but hey, it can't hurt to try, right? I really believe this won't last forever though... but, uh, if God forbid it keeps going, maybe you should talk to the oncologist about getting some actual anti-diarrheal meds?
brightgardener8, here’s my (slightly late) little update. 😢
Grace Fowler, I honestly just have to say, I am constantly blown away by your grit, your bravery, and that relentless optimism of yours... I find myself scrolling back through your old posts every now and then just to get inspired... 🙂 I’m really pulling for things to turn around soon! We’re all right there with you!
That damn girl hasn't checked in for a bit... how are things going with her?
Come on guys, give us some good news for once!
My mom just finished her sixth round of chemo. Honestly, I’m so incredibly proud of her. She’s been totally exhausted—which, let's face it, is just how she is—but she handled the whole thing like a total champ. In two months, she has to go back for some deep-dive testing. Of course, I’m doing everything I can to keep her spirits up and keep her laughing, because I won't let her sink into those dark moods, even for a second... though, man, that's a tall order with her personality... And just when we thought we could finally catch our breath, it looks like my father-in-law is facing surgery for inflammatory bowel disease. He’s currently waiting on his biopsy results. 😢
We were actually planning to head out tonight to catch a lecture by Lothar Hirneis (it was at 8:00 PM over at the ADA in Beverly Hills), but it looks like we aren't going to make it. Has anyone here actually heard him speak or maybe read one of his books? I haven't gotten around to either... so I'm not sure what to make of it, but, hey, at first glance, it seems like it might be worth hearing about his take on alternative cancer treatments and the insights he's gathered over the years. If anyone happens to be there, maybe you could share your thoughts so I know if it's worth making the trip tomorrow (there are sessions at the Fashion Institute of Technology at noon and 6:00 PM at the senior center on Fifth Avenue).
quietpilot87, reading through everything you’ve posted, man, it really shows what an incredible, brave woman your mother was... she clearly passed so much of that strength down to you, too. I bet she was just so proud to have you by her side through it all.
I’m really rooting for you guys to pull together and get through these brutal times as a family. I'm so incredibly sorry... 🙂
Lisa Thompson said:I started dealing with fibroids right when I had my Mirena inserted, so just a heads up on that timing... And because of one pedunculated fibroid—about 73x42—plus a clear cyst on my ovary measuring 21x22x32 at age 46, two different doctors both recommended a total hysterectomy, including the ovaries and tubes, the whole works.
As for me, they actually just took out a pedunculated fibroid this year (via laparoscopy using a morcellator), it was about 80x25 and sitting outside the uterus... It had been growing for a few years now. I’ve been getting checkups every couple of years with three different gynecologists—some private practices and some over at major hospitals in Chicago—and I even grabbed a few extra opinions based on my scans. At first, back when it was way smaller, everyone was telling me it absolutely had to come out, but then finally, once I made the call to get it done, my current OBGYN and the surgeon who actually did the procedure told me I didn't really need to go that far and that I could potentially still get pregnant and deal with it after having a baby. Still, honestly, I'm just relieved that thing is finally out of me 🙂 I've heard such a massive range of stories regarding fibroids... for some women they cause all sorts of issues depending on where they're sitting, while others just live with them forever without ever needing surgery. I don't know what your specific situation is looking like, but if the doctors have laid out their reasoning, maybe you should just listen to them... or maybe go hunt down one more opinion? Maybe there's a way to avoid losing the ovaries? But then there's that cyst—I mean, I really don't know how big of a deal that actually is in the grand scheme of things. The thing about fibroids is that if you're predisposed to them, there's a pretty high chance you'll end up with a bunch more later on... Maybe they're just thinking that since you aren't planning on having more kids, doing the full procedure now will prevent future headaches. Come to think of it, a ton of women I know from my neck of the woods—mostly older than you, like my mother-in-law, my neighbor, my godmother...—have had at least a hysterectomy, and some even had their ovaries removed. They all say it's not the end of the world. Ugh, looking back, I've used way too many "maybes" so I don't even know if I'm being helpful here or just making you more confused... I really hope everything works out okay for you—it probably isn't as terrifying as it seems when you first find out.
Grace Grant10, I mentioned this before and I’ll say it again—I am truly sorry if I misread the situation... I just wrote down what it looked like to me (which, looking back at the other posts more closely, really seemed aimed mostly at placidtinker13), but everyone else can decide for themselves how they feel about it. I guess I'm just hyper-sensitive to anyone trying to pull a fast one, especially given the heavy stuff people are dealing with here... In this whole "information exchange" thing, you constantly run into people who are just trying to hype themselves up and play the hero. So, yeah, my apologies once more if I totally misread the vibe!
We were actually looking into which supplements would be best for my mom a while back—so we started digging into IP6. I have to admit, we didn't manage to find much solid info (aside from all those flashy, over-the-top ads popping up on random websites), especially nothing firsthand from people actually using it. We did pick up on how they try to pitch this stuff, though, which was honestly more of a turn-off than anything else... Some of what we learned came straight from other folks on these forums, while some of it we just picked up through the grapevine... Look, I’m sorry if I’m totally off base here, because I truly believe that taking certain supplements shouldn't hurt anyone, and, I'll be real, I can't say for sure whether this specific one even works or not... I don't want to offend anyone, BUT, seriously, hasn't it caught anyone else's eye how suspiciously neondrifter9, placidtinker13 and Grace Grant10 seem to be pushing this exact same supplement through their posts?!? All of them (if we're really talking about just three people) showed up on this forum just a few days ago, and IP6 seems to be the main reason they're even here—I'm asking the moderators to please take a look at the other recent posts by these same users! Is this an ad? It kills me to waste precious time and space here when there are people who actually need it, but I just don't want anyone (myself included) to fall for this trap. A little while ago, I posted a question about this same thing on the Cybermed portal, and while I know doctors here in the States rarely suggest adding supplements to standard treatment, I'm dropping the link anyway because I really respect the well-reasoned opinion the doctor gave in his response... you guys can decide for yourselves!
Have you ever thought about just... I don't know, totally flipping the script on your lifestyle and what you actually eat? Look, I get it, it’s not exactly easy to overhaul everything overnight, but we're talking about your actual health here, and honestly, it's better to make those moves now before things go south... which might be a hell of a lot better than just popping pills (though let's be real, TV commercials are constantly shoving every random supplement down our throats anyway) Anyway, I was reading up on how dandelion root works as a natural detox—you can toss it in a veggie dish or just brew it as a tea—and it’s supposedly great for flushing out toxins, especially for your liver... I'm pretty sure there's a ton of other natural stuff out there that could help too. Have you actually sat down and talked to a doctor about all this yet?
Melissa Kim45 said:I just really hope she’s hanging in there and that her journey is peaceful...
Please, everyone, you've gotta fight like lions, don't you ever let them see you quit. Death is the easy way out, but we're the ones left here carrying all this heavy weight on our shoulders... May God watch over all of you, and your families too.
Blaise, please accept my deepest, most sincere condolences! Everything you've shared here on your own tells us everything we need to know about how much strength, love, and total devotion you had for your mom... honestly, I couldn't even find the words to say anything more powerful than that. Hang in there! 🙂
Blaise, I honestly don't know how you do it, your strength is just unreal...
Chelsea, I am so incredibly sorry for what you're going through. Life has to keep moving forward somehow... and at least your dad isn't hurting anymore. Hang in there, stay strong...
Nancy Thomas18 said:Thanks for all the support everyone... but honestly, what can you even do? That yellow haze just grabs you and won't let go. I've got an abdominal CT scheduled for next week... keep your fingers crossed for my poor little liver 🙂
You sound way better now. 👍That’s the spirit. Stay strong!... and please, check back in after the CT!