Hey there!!! Just a quick update regarding my latest test results.... My marker is finally starting to dip a little after three weeks, which is definitely encouraging... I'm waiting until October 14th to get my CT scan and biopsy done on the suspicious area... Until then, I’m supposed to be resting, hmm, yeah—that's the hard part because staying stuck in bed is honestly the worst (though, I guess I can justify a little walk while tracking everything on my Fitbit:-👍) AND I AM BUSY COOKING EVERY SINGLE RECIPE THAT COMES TO MIND😉🙂. The truth is, I can't actually eat most of this stuff (thank goodness my husband is here to help!:-) but it still keeps my spirits up. I REALLY WANT TO PASS ON SOME OF THIS OPTIMISM AND MY BELIEF THAT THINGS ARE GOING TO GET BETTER TO ALL OF YOU Just stay brave and don't give up... Your Dan P. S.
Hey everyone!!! I’m honestly praying I can actually manage to make it out to Jarun tomorrow.... I’m so close to home, so maybe I can just scrape together some energy from the bottom of my barrel if I have to..... See ya there............. Grace Fowler
Maria Jones40 said:And one more thing—this is huge. Patients have the right to choose their own doctor. You have the right to seek treatment wherever you want in the United States. Honestly, the whole foundation of successful treatment is trust. If you don't trust your doctor, you end up with frustration on both sides and a massive headache of problems. So, look—it might be better to just switch doctors, or even move to a different city for care, rather than belittling people who have spent years building their expertise and are doing their absolute best to take care of you.
With all due respect—and I mean this to those few wonderful people out there actually doing their jobs professionally and responsibly—I personally have had some very, very bad experiences. Maybe it seems easy to you... to just swap doctors... or change hospitals... or move to another city... but in the real world, it’s just not that simple.
granotoc says: I’ve been scrolling through some older posts here, and honestly, I am just in awe of you all—especially the sheer strength and willpower you guys show. My mom finally got her official diagnosis, and apparently, according to her hematologist, it’s the "best-case scenario" type of NHL because it's slow-growing. But—and this is a huge but—right while they were finalizing that diagnosis, they also stumbled upon papillary thyroid cancer. We are all just reeling from the news; we were already trying to wrap our heads around the NHL, and then out of nowhere, this thyroid thing hits us. I mean, seriously, what are the odds of one person getting hit with two different types of cancer at once???? They operated on her thyroid, and she’s finally been discharged after being in the hospital for so long. Now that she’s recovering, we’re just bracing ourselves for the chemotherapy rounds.
Oh honey, I am so sorry, but unfortunately, it isn't actually that rare. For me, after fighting ovarian cancer (adenocarcinoma) for four years, I ended up with bladder cancer (microinvasive transitional cell)... it was such a surreal, painful thing to deal with—having 35 years on your shoulders and basically facing a death sentence twice. But the most important thing? Once you process the news, you just have to grit your teeth and keep moving. In my case, it’s been one thing after another... but I’m going to be the one who wins this. My fight has been going on for ten years now. It hasn't always been pretty, but I'm still here and I fully intend to stay. So, I want you to HANG IN THERE and stand strong by your mom's side, because you guys are TOUGH and you’re going to wipe the floor with these bastards... Sending love to all the fighters, Grace Fowler
slyseal28!!! I'm honestly praying to God for you and the Pigeon...!!!! Please, just let us know how things are going...
Dammit!!! Look, please—just grit your teeth and push through. If you've been this brave and successful up until now, I am POSITIVE you can dig even deeper and find more strength...
... My dad was a true hero who fought until his very last breath—and he was right there by my side and my mom's through all of it. He finally just drifted off, totally exhausted and worn out, leaving that battered body behind. In a way—he's finally at peace...
Dominic79, I am so incredibly sorry for your loss!!!
Just my two cents on those PET/CT scans—honestly, I’ve been through a million doubts myself regarding test results. Last year, I had mine done in Vienna and the results were absolutely devastating. But, after a biopsy procedure, everything came back clean: NO TUMOR INFILTRATION FOUND... But now, what's got me spiraling again is that they're pointing to a recurrence in that same area (and to make matters worse, I can't even get into MIT right now because of how bad things are). So, in the next few days, I'm heading in for another ultrasound-guided biopsy to get a fresh cytology analysis on that "suspicious" spot. My fellow warriors, all I can tell you is to grit your teeth and don't let this "filth" take up any more space in your head if it's hitting you hard right now. I'm STERNLY pulling for all of you. Your Dina
Hey there!! So, here I am after what was, quite frankly, a totally insane week. I’ve been tearing myself apart all over town—basically running from one hospital to the next—just trying to get these test results back as fast as humanly possible. Thank God for the amazing people who helped me out while I was being so relentless about it... So, here’s the deal: the lung X-ray? Done. The abdominal ultrasound? Done. Now, the OB-GYN surgeon is calling it a so-called "abscess"—which really just means they want to try an ultrasound-guided biopsy... and then, supposedly, I'm supposed to check back in with the surgeon, but yeah, that's just how it goes... :-(. Then, my dear abdominal surgeon—as if he were possessed by some demon—gets stuck in surgery today and hasn't shown his face all day... and the assistant finally deigns to grace me with a word after a few hours just to say: "We'll contact you when a slot opens up for the biopsy..." But honestly, I'm not even sure if that's even going to catch anything this way... basically, "Go home... and wait." I walked out of that hospital feeling pretty pissed off and just completely over the whole situation. But then, as I was walking back to my car, that furious little thought popped into my head again... FROM ONE MESS TO ANOTHER, BUT AT LEAST I'M DOING OKAY HERE... So, I hopped in the car, blasted my favorite CD, and made it home with some seriously good vibes. Anyway, my friends, WE KEEP MOVING......... Warm regards from Dino :-)
Blaise, honey, I am so incredibly sorry for your loss.
I’ve been off the grid for a while—after all those massive complications, the hospital visits, and that whole "do we operate or not" drama. I actually just escaped to the coast for a bit to try and recharge my batteries and give this body of mine a break. The ocean, the timing... everything aligned perfectly (well, if I had actually planned it that way, maybe things wouldn't have turned out this way). I’m back in New York City now, feeling full of energy and good vibes, so naturally, I went straight for the medical tests. And what can I say? Terrible news. My tumor marker jumped by 2.5 times since the last check, and after talking to my oncologist, it’s official: the disease is active again. It’s not that it’s a huge shock, but it’s just so frustrating because I can’t go back on chemo (thanks to kidney issues) and I can't do radiation either since I've already hit my lifetime limit. Hmm, honestly, I'm not even that upset—I guess the more time passes, the less stressed I get about it all. Like slyseal28 says, it isn't really a fear of death, it's more just this heavy sadness and regret regarding the thought of saying goodbye to the people I love most. There's a whole mountain of testing ahead, and maybe, just maybe, another trip to Germany for immunotherapy... I'll keep you guys posted... Sending you all nothing but love Maybe a little sentimental, your Dina
Betty Sanchez82 said:Hi everyone. I'm looking for some advice regarding mouth ulcers and canker sores. My dad finished two rounds of chemo and actually handled them pretty well. But now, he's dealing with gums that bleed whenever he brushes, and his whole mouth and tongue are covered in these white blisters that are super painful. He’s usually able to eat normally, but because of this pain, eating has become a real struggle. Does anyone have any tips on how we can get ahead of this problem?
Hey there! From my own experience, all I can really suggest is using Aloclair gel—and honestly, constant rinsing with chamomile tea helps too. It might help, but the real issue is that chemo just wrecks your immune system, and that's why those canker sores pop up in the first place. There was one time when Daktarin gel worked for me, though—it has a bit of a nasty taste, if you ask me.
Hey there! slyseal28, my very first round of chemo—way back in 1999—was Adriamycin, and man, it left me with some pretty nasty cardiac issues (basically complications with my thoracic organs). But the absolute worst part was how bad my results were after the 6+2 cycles, which forced me straight into a second line of treatment with Taxol. I’m only mentioning this because I decided to go back and dig through my old journals from the start of the war... and let me tell you, reading my own words... god, I don't know how I felt like someone had just sucked every ounce of strength out of me through a straw. It honestly felt like the bed was the only place I could find any peace away from the nausea and the pain. Fast forward nearly ten years later, and yeah, I still deal with thoracic issues (metastatic changes in the lungs), basically facing the exact same situation you are now... When I got my recurrence diagnosis last year, my specialist Radiologist told me point-blank, "...sell everything you own, try to find help in Stockholm, Paris, or even the US, because at this rate, you've only got about four months..." I mean, what can I even say? When I walked out of the hospital, I couldn't even find my car in the parking lot... But look, I'm still here, doing relatively well, and I fully intend to stay that way. I SWEAR that you and Pigeon have enough strength to pull yourselves out of this current bottomless pit... PLEASE, I am begging you, always get a second opinion for every single radiology scan because, in my experience, it is absolutely vital...!!!! If I rambled or got anything wrong, I'm sorry—it's just that I'm feeling a massive wave of emotions right now seeing what you guys are going through...!! THANKS TO EVERYONE FOR THE SUPPORT Grace Fowler
Hey there, my favorites!! Just wanted to check in—things are pretty much staying the same, unfortunately!!! We actually managed to get away to the beach for a few days, but after about ten days, everything just went south again :-( a fever hit, the lab results were terrible, and we raced back to Chicago at lightning speed. We had our consultations and, for now, nothing has changed—just "REST." Pffft, seriously? That’s supposed to be actual advice!? I've done plenty of resting, but honestly, it doesn't do squat to calm things down. So, for the next few days, I guess I'll just play the part of a pillow and stare blankly at some impossible TV shows... Fighters, I really hope everything is okay with the Pigeon and that you're all leading the charge toward a win.!! Nancy Hernandez43, I'm keeping my fingers crossed that you're still holding strong! Muscle girl, I bet you're already tan as a dark chocolate bar by now... Angela Wright!!!! Zivaj for me too Greetings Din
rapidbear8 said:I posted here once before just to vent about how much it hurts—dealing with my dad's illness (lung and brain cancer)... he lost his final battle on July 15th😢😢😢 it was only six months after we found out how bad things really were...
rapidbear8! My heart truly goes out to you. Grace Fowler
Linda Wright5 said:Hey everyone, I'm writing this with a heavy heart—but I'm at peace—to let you all know my sister passed away peacefully in her sleep last night. She was such a fighter, seriously... I am just so incredibly proud of her.
I’ll still be hanging out here reading your posts, and I'll try to help out where I can, if that's okay.
Hang in there, guys. Just stay strong.
Dear Angela!I am so, so sorry for your loss. Sending you so much love, Grace Fowler
Hey there, my fellow warriors!!!! It’s been five whole weeks—five!—since I last checked in, so here I am, finally venting!!?? A little seasonal bug hit me hard and just wouldn't let up:-( I ended up with sepsis that they couldn't even pinpoint via lab tests, which basically kept me sidelined for over a month. But hey, I’m not just going to roll over, haha! After all that time, they finally found a nasty abscess near my psoas muscle (that abdominal muscle that makes me hunch over) which had to be surgically removed, though we were stuck debating the best way to go about it. So, yeah, I spent my time bouncing from one hospital to another whenever there was any good news :-) My surgeon actually ran some follow-up scans first (an abdominal CT), and it turns out the mass is shrinking—so they aren't going to cut me open just yet because there's a decent chance it might just resolve on its own. Naturally, I practically bolted out of there the second I could... finally back to my own bathroom.... my own bed... and don't even get me started on the food..:-). I hope you guys are all doing okay and staying strong... I'm going to try and catch up on everything I missed tomorrow, I'm just a bit wiped out... Warm wishes from Grace Fowler
Hey there, folks!!! I honestly feel like this heatwave is being thrown at us on purpose—just to remind us how tiny and helpless we really are against Mother Nature. I’m barely hanging in there. To deal with this sciatica, I went to get some acupuncture, which helped a bit (so yeah, I'm no longer the "question mark" from my profile), but this temperature is just relentless. I've got more tests lined up tomorrow since I'm finishing up a course of antibiotics, so we'll see what happens next...
ISCADOR I actually used those personally for bladder issues and they worked wonders for me. Dr. John Doe, a homeopath, prescribed them—basically, I was injecting them into the bladder area every single day for four weeks. I picked them up at a pharmacy near Pike Place Market. If anyone needs more info, I'm happy to help.
Hey there, my dear friends!!! I am telling you—I literally had to crawl out of the hospital... About two and a half weeks ago, my fever spiked through the roof, my CRP shot up to 308 (normal range is 0-5), and my SE hit 125 (normal is 0-24)... long story short, I was rushed straight into emergency hospitalization with a diagnosis of clinical sepsis. And just to make things even more miserable, this nasty sciatica decided to attack my right hip at the worst possible time, so I was literally crawling to the bathroom... it was awful. But, I'm doing better now—my labs have improved, and while I'm still finishing up my antibiotics, I am ALIVE, oh my god! :-) I missed my immunotherapy appointment in Germany, but once I'm back on my feet, I'll get it sorted...
MY HEARTFELT SYMPATHIES TO Alenka's family and friends!
My dears, I'm sending tons of positive energy to all of you—please, just hang in there... Grace Fowler
Hey there, fighters!! Sorry I’ve been MIA lately—I’ve been dealing with this brutal bout of sciatica (and let me tell you, it hurts like hell), and honestly, the painkillers and injections haven't done squat. To make things even more fun, I've got this fever hitting 101.6 constantly. My bloodwork shows some serious inflammation too—my CRP is through the roof at 187.8 when it should be under 5—so it looks like there's some kind of infection going on. It’s not my kidneys or bladder, though. If things don't settle down by Monday—I'm on antibiotics right now—then I might have to head straight to the ER for surgery. Fingers crossed everything stabilizes... Grace Fowler is staying positive because of her mom :-)) Sjebana: hang in there, I know YOU CAN DO THIS!!!!! Best, Grace
Hey there! I'm just being honest—this is heartbreaking.
So, I’ve been drinking that "silver water" stuff too—I actually started right when I arrived in Germany for my immunotherapy. Honestly, I can't tell you anything super specific about how it works or whatever, but I do know one thing... ever since I started using this along with my other supplements, my appetite has been amazing. My digestion is back on track, and I’ve actually put some weight back on, which was a huge deal for me since those last rounds of chemo and the surgery pretty much drained the life out of me. I have no clue where you could even pick this up here in the States, though, because my doctors over there make sure I'm fully stocked up before I head home. And for the record, it isn't even pricey—it’s only like 8 bucks for half a liter.
I really hope everyone out there fighting the good fight is holding up okay—and man, I hope this heat isn't absolutely killing you guys... personally, I’m basically a hermit right now, staying glued to my AC until late at night just so I can sneak out for a walk without melting. Just sending some love out to everyone—thinking of you all! :-) Grace Fowler
Hey there, everyone!! Well, I'm back—that little bout of bitterness finally passed... I guess that’s just how it goes sometimes. Those moments of weakness hit you out of nowhere, but thank God they pass, and I'm moving forward. I've realized lately that I've had way too much downtime, which just leads to me overthinking stupid things—so I've decided that's a total waste of energy. Instead, I'm going to use my time for something actually productive, like trying to get all my experiences down in one place. I want to offer some advice on how to fight through—or rather, how to survive—those crushing moments when you first get that news, you know, when they tell you, "you have cancer." Over the years, I've been jotting down little bits and pieces from my daily life, so I'm going to try to pull it all together. These little notes meant everything to me because whenever I looked back at them, they gave me the strength to keep pushing. Seriously, guys, if you ever feel like you can't find the words to say what you're feeling, just grab a pen and a notebook and write it down... it really helped me. I felt pretty defeated this time around... but I'm thinking of all of you, and I'm rooting for you so hard. Yours, Grace Fowler
Elizabeth Diaz60 said:This heartbreaking Thursday, my dear mother passed away. She was only 49. It’s been almost three years since her diagnosis (a glioma), and she spent this last year unable to move. She spent the final ten days in the hospital because things took a turn for the worse. Her condition during her stay was pretty up and down—we were really holding out hope that we could bring her back home. She spent her whole life, including those incredibly tough final years, surrounded by the people who loved her most. Even in those very last moments, she wasn't alone. My sister, my wife, my sister's partner, and I were all right there by her side. Just like she did throughout her entire life, she fought until the very end. She was truly an exceptional woman throughout her life. Everything she did was for her family—her kids, her husband, her parents. She always put us first and never once thought about herself.
Thank you, Mom, for everything! You will live on through us and through our children forever!
My deepest condolences for such a massive, overwhelming loss.... Look, I'm not really the type to cry—honestly, I rarely do—but right now, I am.
My oncologist decided, based on the latest tests, that we should wait four weeks to redo the marker results before deciding on the next steps. I haven't lost my nerve or my will to keep fighting... I just want to start envisioning myself in a better future, without this constant, agonizing waiting between one test and the next... Keeping my fingers crossed for everyone else in the fight—let's stay brave, summer is right around the corner after all.... Dina