Hey everyone!! So, I’m back from New York City... and man, I had the absolute time of my life... :-) ...but, because things can't just stay perfect, I went in today for my routine tests before tomorrow's follow-up, and well, total bummer :-( even though my ultrasound and chest X-ray came back fine. I picked up my tumor marker results at 6:00, and—get this—that main one (around 125) jumped up to 70... damn it...(it was only 29 last time, about 2.5 months ago). At first, I was absolutely livid—just fuming—but now I've kind of slumped a little... and honestly, I can't help it, I can't just flip a switch and be fine again. Tomorrow I'm heading to the oncologist to see what the deal is... Like I said, you can't just jump from being angry to being okay overnight. I hope you guys are all staying brave and keeping up the fight.. Sending love to you all, and I'll check back in when I have news. Vasa Din
Hey everyone!! Well, I’m back after finishing up yet another round of immunotherapy and ECT over in Germany—everything went better than expected, actually, and my doctor is super happy with how I'm responding... :-)) . I'm heading off to London this Monday just because I feel like it. These last few months have been pretty "rough," so now it's finally time for me to go out and live a little... ojeeee... Dear slyseal28, I was honestly so heartbroken to hear your latest news about the recurrence. I could try to list all the emotions swirling around in my head right now, but based on my own experience, once that initial shock wears off, you find this crazy surge of defiance—it gives you this extra grit to fight this crap. I'm keeping everything crossed for you, and I truly believe you're going to come out on top again. Sending big hugs and tons of positive vibes to everyone struggling right now.. Sincerely, Vasa din :-)
Hey everyone!! Another week just slipped by—honestly, I don't know about you guys, but I feel like I’m losing track of what day it is, let alone what month we're even in. And I swear, it makes me so sad whenever I read the new posts here... there's just so much heartache and tears in everything. I really want to send as much positive energy your way as possible, because I truly believe that staying positive—whatever people want to call it—is the best thing we can do while we're fighting this battle against illness. Personally, that mindset is what keeps me going and keeps me fed through this whole year. I get it, I really do, and I can sense what you're all going through during this nightmare, but I KNOW that there is an endless amount of love hidden inside every single one of us—and that's where that positive energy comes from. As for me, my results are looking a bit better, and we're actually heading to Germany this Sunday to start immunotherapy, so I'm feeling pretty hopeful about that. Please don't be mad at me if I occasionally try to be optimistic when it might feel out of place... I promise my wishes are coming from the heart :-) Grace Fowler
CRP is basically just a way to track if there's any inflammation flaring up in your system. Since the normal range is usually 0-5, you’ve got a slight bump there—but honestly, don't freak out yet. It’s a super sensitive test, so it can react to all sorts of minor things. I'm guessing you probably had other bloodwork done too, so I'm wondering what your ESR looks like? And how was your urinalysis? If they suspect anything involving the urinary tract, things like urates and creatinine clearance are pretty much standard procedure. Also, if your CA-125 is within the normal limits of 0 to 35—which is the typical marker for ovarian stuff or endometriosis—then you're probably fine. Still, you should definitely check in with your doctor; they'll likely just want you to circle back and retest in a little while to be safe. Best, John Chase6
Hey there! I don't really have any good news to share :-(—basically, the test results were pretty rough, so we had to push things back a week to give her body a chance to hopefully stabilize... (markers are up, sedimentation is high, CRP is elevated... and we still don't even know why???) But hey, I guess patience is a virtue. Dear Amanda Miller69, I am so incredibly sorry that the latest updates regarding your mom are this bad. Please, please try not to take it personally when she says something harsh—it’s just not who she truly is. That irritability she might be showing? It’s probably just a reflection of how much she's hurting because of everything she's going through. Sandra Evans13, I'm keeping your mom, you, and your sister in my thoughts. I hope you all find the strength you need to get through this. I totally get it, too—I went through something similar about two years ago when I had to say my final goodbye to my dad... Best, Grace Fowler
Hey there, my fellow warriors!!! I’m reading and following along with you guys every single day, though—I’ll admit—I rarely jump in to say anything.... So, it’s been six weeks now, and I’m gearing up to head back to Germany this Sunday for immunotherapy... things are mostly going okay so far... the aftermath from the last surgery and chemo is hitting me a little harder than before, but hey, it isn't totally unbearable.....
P.S. Nancy Thomas18—hang in there, things have to get better :-) gentlemoose62—I hope you’re doing well and staying upbeat; honestly, I’m a little jealous of all those amazing scents you get to enjoy out in California :-)
And to EVERYONE, EVERY SINGLE ONE OF YOU, whether you're a new fighter or an old hand, I'm crossing my fingers for you and I truly believe you'll win this fight against that "jerk"
Donna Hernandez21 said:Could someone please tell me a bit about bone scans? How does it actually work, and how long does it take? How long is the average wait for an appointment? And for the results? I read somewhere that it can sometimes take a few hours, and you have to stay super still... I'm asking because my dad just had spinal surgery, and staying in one position for that long is going to be really tough for him.. Thanks!
Hey there!! So, a bone scan is basically a painless, straightforward test. Once you finally get an appointment—which usually means showing up by 8 AM—they inject a contrast agent into your vein, and then you’re pretty much on your own for maybe 12 hours or so... I guess. The actual imaging part only takes about ten minutes. Results usually come back in about 7 to 10 days. I've personally had them done at Mayo Clinic several times, and they always follow the exact same protocol. Fingers crossed you get an appointment quickly and everything comes back looking good. Best, Grace Fowler
Has anyone here actually dealt with the whole diet and stoma maintenance thing before? I know I might have scrolled through some info on the Forum ages ago, but I really don't feel like digging through old threads right now...
Hey Amanda Miller69!! I am just so relieved to hear that everything went relatively well with your mom. Seriously though—never, and I mean NEVER—trust those medical prognoses (take it from me, I've been there). Regarding the diet for people who’ve had an ostomy, it’ll start out pretty light and bland at first, but you’ll get all the specific instructions before she’s even discharged... and hey, if anything goes sideways, just reach out... For the supplies you'll need to manage the stoma, you can contact Stoma Medical (ask for Zoe or Mary)... but there's plenty of time for that. I just wanted to say we're all here for you if you need any kind of help...
Hey there! I feel terrible that I can't really offer much advice regarding the nausea—I mean, Zofran always worked wonders for me, but honestly, that was only when I was getting it intravenously right at the start of chemo. I'm crossing my fingers that you guys find something that actually helps him... Grace Fowler
I've been lurking on this forum for a little while now, and I finally decided it was time to jump in. My mom is fighting ovarian cancer—it was caught two years ago in the late stages and it’s spread to the peritoneum. She’s already gone through two surgeries, nine rounds of chemo, and six doses of cytostatics. Things were actually looking okay for a bit, but recently she developed ascites in her abdomen. We’ve been at the Mayo Clinic seeing her specialist, and she’s heading back to the hospital this Monday, followed by HIPEC surgery the week after—which apparently takes an entire day. Another doctor we consulted mentioned that based on the CT scan, the tumor is operable, though he did hedge and say you might not know for sure until they actually open her up. My dad passed away three years ago from a heart attack, so... yeah, it's just really hard right now, thinking that my mom might be reaching the end too. Does anyone here have experience dealing with this specific type of cancer?
Hey there!!!! First off, I just want to reach out and say hello—we're all going to try our best to support you with advice and just being here. Honestly, in situations like this, I can't stand it when people use phrases like "finally" or whatever, because it's just insensitive. I know things look serious with your mom—they really do—but it's not over yet, okay?! Seriously! Even for me, the prognosis has been pretty grim more than once, but hey, I'm still standing... :-)) Please, let me know which chemo lines she’s already finished. For any other details, just shoot me a private message. You have to stay strong, because when cancer hits, it isn't just the patient who gets sick—the whole family is pulled into it the second that diagnosis drops. It is so incredibly important that you guys try to push through the fear and the grief. Sending you tons of positive vibes, and please, reach out if there's anything at all I can do to help. Grace Fowler
Hey there, fellow fighters!!! Well, I’m back and feeling pretty good... 😉 I don't even know what to tell you guys, but this round of immunotherapy and electrotherapy was actually a success—meaning, I didn't have any side effects at all, it was smooth sailing through and through. I just got my lung scans back and they show the exact same thing as they did three months ago, plus all four tumor markers I usually get tested for are right at the normal limit, and my blood counts are looking really solid too. Honestly, dear friends, I feel great—it feels like I always get a second wind right when everyone else thinks things are going south. I'm keeping my fingers crossed for all of you and your loved ones who are out there in the "trenches," because I truly believe positive energy gives you that extra bit of strength you need. Everything is still super fresh from my trip to Germany, so once I catch my breath and rest up a bit, I'll jump back in here with all the details. Best, Grace Fowler
P.S. I just want to add one more thing—over these long nine years of fighting this monster, I've become personally convinced that the right path toward healing (and I mean real healing) is combining modern medicine with alternative approaches. I’m not trying to offend anyone, I really am, but unfortunately, there is no such thing as a single "magic pill" that does it all...
Look, here’s the deal—an acquaintance of ours was diagnosed with lung adenocarcinoma last year. By February, she had pretty much exhausted every standard treatment option available (we're talking both lungs, liver, and the spine), so she was left with nothing but alternative routes. Since she’s only in her thirties, everyone jumped in to help research where, how, and what could be done. That’s how she ended up at Dr. Rohde’s clinic, where they use galvanotherapy—basically high-frequency electrical currents that target the tumor mass directly. Anyway, long story short, that therapy combined with immunotherapy (delivered IV) actually worked; she’s doing great now, the tumors have shrunk, and she’s moving forward. I actually went through something similar back in May—I had a suspicious mass in my small pelvis that was progressing rapidly, plus metastases in my right lung. My test results were a total disaster, and the prognosis? Just as bad. So, I started my fourth cycle of chemo. But, since there wasn't the expected response to the chemo—and I nearly lost my kidneys due to some insanely harsh nephrotoxicity from the drugs—plus I couldn't even do radiation because my abdominal area was already maxed out, I figured I had nothing left to lose. At the end of October, I headed over to Germany for three weeks. For the first time in almost nine years, my blood counts were excellent, and I just felt... good. I don't know if I'm allowed to talk about the specific clinic or the costs here, so if anyone wants the details, just shoot me a private message. I'll just say it isn't outrageously expensive. pozdrav din how did it go?
First off, I just wanted to say thanks for all the well wishes and the good vibes while I’ve been recovering. And now—get ready for some absolutely phenomenal news: as most of you know, I’ve been fighting this cancer battle for almost ten years now, and this was my third relapse... so even though every single modern scan (CT, PET SCAN, MR) showed an active, progressing tumor (my oncologist even told me straight up, "this is it"...), after getting the pathology results back, they say NO MALIGNANT CELLS :-))I don't even know how to put this into words—first it was juice, then total disbelief, and then just pure, overwhelming joy........:-)))))). Honestly, I can't even tell you how much positive energy this gives me for the next stage of the fight. I’m telling you, I truly believe the immunotherapy and the galvanotherapy I received in Germany after my last chemo cycle played a huge part in getting these incredible results. Now, I’m gearing up to head back to Germany for another round to try and tackle the pleural issues—there are still some changes there, even though the scans show things are regressing and my markers are totally normal.....:- Sending big hugs and smiles to everyone! :-) Warmly, Vasa din
Hey there, my dear friends!!!!!!!! I'm finally back homeeeeeeeeeeee—after a long, exhausting 17 days, I am finally back. I wanted to let you all know that I'm doing pretty well. The SURGERY was a success, and the pathology report looks encouraging. I'm just so incredibly happy... I'll be checking in over the next few days with all the details... Kisses, Dina :-)
Hey everyone!! Just checking in before I head out—I’ve actually got my surgical residency interview tomorrow... I'll be sure to post some updates once I know more.. Grace Fowler, hang in there!
Laura Kelly91 said:Hey everyone, I’ve been gone for a while—things have just been... awful. My dad passed away on January 10th after dealing with some pretty brutal pain for a few days. Everything just went downhill so fast... It was devastating, and honestly, it still feels that way. He left us only eight months after my mom, who fought cancer for about 20 days before she lost her battle. They diagnosed him with a tumor three and a half months ago... At least they're together now, even though I'm just... I don't know, completely numb from the sadness. But look, I want to be here for you guys and support your fight. Despite everything hitting me at once, I truly believe winning is possible. You have to try everything—there are so many success stories out there. So please, just keep pushing and keep fighting. Don't you dare give up!
Mike !! I am so incredibly sorry for your loss. I really hope you find the strength to get through these next few rough days. Grace Fowler
Hey everyone!!!!!!!!!! I’m reading this and I honestly can't believe it—though, I guess I should have expected it. For years now, I’ve had this feeling that the second you get hit with a diagnosis, you immediately start tilting at windmills...😠 I just really hope God gives us all the strength to hang in there through these brutal times and, more importantly, helps us keep our sanity intact.. Best, Dan Hold
Hey there!!! Elizabeth Gonzalez55, I’m rooting for you—wishing you nothing but the best on this journey and hoping the therapy works wonders (just like it did for me)👍👋 We’re all just sitting here, anxiously waiting for your return and seeing those results... Not much going on with me, honestly—just in the middle of prepping for the 18th, which is basically D-Day for me. Best, Grace Fowler