Thank God, Mom and I have been here in Germany for seven days now, and we’ve finally reached the point where the only thing left is a biopsy of the left lung. So far, based on what we know from the doctors back in Chicago, we have the morphology and cytology for the right lung. The bronchoscopy on the left side also showed adenocarcinoma, but without the cytology because I had to rush to my appointment here in Germany and didn't get that part done. They told us that depending on the classification or category, it sits somewhere between stage 3 and 4. Back home, they basically said, "Alright, all you have left is chemotherapy." Now, the doctors here in Germany are suggesting a puncture on the left side to potentially identify the malignancy and specific mutations. The logic is that it would help pick the right chemo. And choosing the right chemo could be the difference between just palliative care and actually getting better treatment—meaning it could significantly improve the patient's quality of life and longevity. When I asked about the success rates, they told me the odds are pretty slim, and there's a risk of a pneumothorax. At first, I brushed the idea off, but now I'm thinking maybe we should stick around another week or two to try it, just so I don't spend the rest of my life kicking myself for not trying. I mean, if it was bad luck that only 2% of people with tumors in both lungs end up in this spot, maybe it'll be good luck if an ALK, EGFR, or some other mutation comes back positive, or if the histology points us toward the best possible chemo. On the flip side, Mom is already pretty exhausted, and I'm worried about how she'll handle the puncture. If things get complicated and she gets totally wiped out, when will she even be ready for chemo? On top of everything, she's developed a cough and is losing her voice... She had a fever of 101 when we first arrived at the clinic in Germany, then on the second day, she had a lymph node biopsy, and thank God that came back negative. On the third day, the bronchoscopic biopsy of the left lung unfortunately wasn't successful. That evening, her fever hit 101.3 again, and she's on IV Klavocin... The brain MRI was clear, lung function is great, and a bunch of other tests to prep for potential surgery all looked good. Everything is fine except for those two damn tumors, one in each lung.... I honestly don't know if the tumor is progressing—which would explain the throat issues, the cough, and the voice—or if it's just damage from the bronchoscopy and a cold. It makes me wonder: how much time do we actually have for this "experiment"? Are we falling behind on starting chemo? Plus, I've been struggling mentally being here in Germany since I'm so far from home. I've never been to Germany before, and the language barrier with the doctors is tough since I only speak English and don't know any German..... How risky is this damn puncture, and am I running late? My head is about to explode.... There's no straight answer, just a thousand "ifs" and "buts"... it's awful..... Anyone have any thoughts?
Testing for the EGFR mutation. RESULT: No mutations were found in this sample.
This is my Mom's report. I’m guessing this isn't great news either, since it means we can't move forward with targeted therapy...
So, that's the deal with the right lung.
Now we’re just waiting on the bronchoscopy results for the left lung. In the meantime, I sent the translation of the right lung report and the PET Scan over to a clinic in Germany. They got back to me saying they're setting up an appointment to potentially operate on the right lung. I haven't heard anything yet from the doctors at Jordanovac because they're still waiting on those left lung results...
My plan is to consult both teams—our local docs and the ones in Germany—and then let Mom make the final call on how she wants to handle treatment. Should I go hard on alternative treatments in the meantime?
Anyone else got some advice? (I've been feeling pretty low lately—should I go see a psychiatrist?)
Right side cytology: Blood, bronchial epithelial cells, and some individual or small clusters of larger malignant cells showing adenocarcinoma morphology. Immunocytochemistry is scheduled next! Brush D: Bronchial epithelial cells, blood. Left side cytology: Blood, reactive bronchial epithelial cells, neutrophils, and macrophages. Brush L: Bronchial epithelial cells, blood. Microbiology test on May 22, 2015: Acid-fast bacilli negative. Aerobic culture on May 22nd: Polymorphonuclear: 0; squamous epithelial cells: CONCLUSION Bronchoscopic analysis confirms adenocarcinoma in the right upper lobe bronchus. No malignant cells were found on the left.
Hey there, My Mom just got some partial results back from her bronchoscopy at Jordanovac. They confirmed a malignant tumor in the upper part of her right lung. As for the left lung, they couldn't quite figure out what's going on over there yet. Next steps are heading to Medikol Clinic for a PET Scan and then another bronchoscopy on the left side.
They claim this is currently the top clinic in Germany.
Mom just had her bronchoscopy today. The doctors said we won't get the results for three to five days, maybe even longer. Mom mentioned the doctor performing the procedure called it some kind of "weird bronchi"... like they were deformed... They took samples from both lungs. There are shadows showing up pretty high up, right at the top of the lungs. I’m wondering if there’s any sense in trying something alternative while we wait for the official word. So many people here get wiped out by chemo, and honestly, the results are hit or miss... I'm just stuck on how to handle this. Money isn't an issue, so whether it's a specialized clinic abroad or even something extreme like a lung transplant... Does any of this make sense? I just want to help Mom, but I have no clue what to do, and worst of all, I don't even know if I can actually help at all.
Hey there. Mom is having a bronchoscopy scheduled tomorrow at Jordanovac... How painful is the procedure really, and what’s the recovery like? Since we’re driving all the way from Dalmatia and commuting every single day, I need to know how long she'll need downtime so I can plan our schedule. If anyone has a few tips or advice... Thanks a million!
Worst-case scenario? Hmm, let's see: Strefit hits an embolism and loses the fight before it even starts... dark enough for you? 🙄
The bright side? It wasn't actually tumor tissue, just scarring from some old lung inflammation... 🤷
So, what are you going to do with all that info? Feel better, more prepared, maybe a little smarter? You’ve gotta stop living in the future!!! Right now! Seriously! Otherwise, things are just gonna spiral. Trust me, there’s nothing more counterproductive than doing that to yourself. You need to be a pillar of support, but not like this. Everyone needs to pull it together and just take things as they come. There’s absolutely no way to know what’s coming next, and you can't prepare for every single tiny variation of how this could play out. Just live day by day. Look at tomorrow, maybe even the day after, but that's it. You’ve taken the first step and now you’re waiting on the PhD. Usually, the doctor can tell you a lot pretty quickly—they'll tell you right away if things look bad. But they aren't 100% sure yet, which is why your sister couldn't give you any answers. Honestly, she isn't even supposed to. Once the PhD comes in, you'll see where things stand, face reality, and then decide what needs to be done—if anything needs to be done at all. That’s the mindset you need right now. Keep your cool. Peace of mind is everything because if you lose it, you won't be able to function. Of course you're scared—that's totally normal—but you have to use logic to keep those fears in check. Come on, just stay brave and take it slow. One step at a time, one day at a time.
You're right, though. Try to keep thinking positive and save your energy for the days ahead.
Hey there, Spent the day at Jordanovac trying to get Mom's admission sorted out. Brought along her discharge papers and those results from the Vineyard hospital. I even pulled the head nurse aside to see if she could give me the real scoop. She told me they haven't ruled out a malignant tumor, but it’s not a definite "yes" either. Is she just trying to keep me calm??? Anyway, the next steps are a bronchoscopy and a biopsy. I'm wondering what kind of tumors we might be looking at and what all the possible scenarios are. I want to hear it all—give me the absolute worst-case and the best-case outcomes. I think I have a pretty good idea of what to expect, but I just need someone to talk to since sleep is definitely not happening right now...
Angela Wright said:There isn't a legal way to import Escozul into the US or anywhere else in the States. Besides, to actually prove it works, you'd need a ton of independent randomized studies with way more people. Shouldn't we be setting up protocols, figuring out real doses, and making sure it doesn't have dangerous interactions with other meds or stuff? So far, they've only published one relevant study, and that was just in vitro, showing it might destroy cancer cells—specifically glioma. But honestly, we're probably ten years away from actual clinical use since it still has to pass two major phases: in vivo testing on animals and then clinical trials on humans. Every phase has its own sub-phases and takes forever. Before those checks are done, taking stuff off the black market is a super dangerous game because there's zero safety net. How are you even supposed to know if you got what you paid for or just encapsulated water? As for complementary treatments, I know a lot of people with lung cancer used white mistletoe injections, which you can legally get at local pharmacies—I know some folks used to buy them at the shop near Dolac. I don't know how effective they really are, but I remember one lady on this forum with microcellular cancer who totally beat her prognosis and swore it helped her. I lost touch with her, though, so I'm not sure how she's doing now.
Thanks so much. You're seriously an angel in all this darkness.
Hey everyone. It’s been about three years since I last checked in here—I took a break after dealing with some heavy stuff involving my mother-in-law. Sadly, she passed away just two months after being diagnosed with a malignant brain tumor. Now, things have taken a turn for my own Mom; her CT scan just showed two 4 cm tumors, one in each lung. We’re heading over to Jordanovac tomorrow. I had one quick question: I’ve been reading about that lung cancer vaccine from Cuba, and I was wondering how much truth there is to it helping people? Also, is it even possible to get hold of it here in the States? Thanks for any help.
Angela Wright said:Sadly, when it comes to glioblastoma—especially at this stage—medicine just doesn't have all the answers. Even at the top-tier clinics in the US, she’d be getting the exact same treatment she is now: anti-edema therapy (Mannitol and Dexamethasone). That swelling is what causes that intense intracranial pressure inside the skull, pushing the brain to one side, which is why she's in a coma. If there's hydrocephalus (fluid buildup) involved, they might be able to mechanically drain that fluid to relieve the pressure. Doing that could stabilize her and wake her up enough to actually start radiation combined with Temodal. My mom went through something similar while she was at Rebro Hospital, and we had to fight tooth and nail just to get them to perform a stereotactic procedure and a CSF puncture. They took her out completely unconscious and brought her back fully awake to the room just 20 minutes later. Honestly, doctors often avoid doing it, probably for pragmatic reasons. It’s considered a palliative procedure, but for someone in your situation, it could mean the entire world. Please look into it and, if you can, try to make it happen. As for Gamma Knife, with a tumor that spread out that much, it's unfortunately not an option😢. That’s usually only on the table for tumors under, what, 2cm? The progression of this disease is inevitably brutal; the best we can do is try to slow it down a bit. I am so, so sorry. As much as I want to be optimistic and write something positive for you, I just can't—not with a diagnosis like this, no matter how selfishly I might wish I could. Just like my mom, she ended up with the absolute worst kind of tumor out of everything possible. Hang in there.
Thanks so much for the advice! And thank you even more for reminding me there's still good in the world! You're the best!
Hey everyone, My mother-in-law is currently unconscious over at the neurosurgery ward at Rebro Hospital.
She was admitted on July 25th after dealing with some dizziness and slight weakness on her right side.
The initial CT and MRI scans showed shadows measuring about 1.5 x 1.7 cm and a larger one at 2.5 x 3 cm. She had an open biopsy and they performed a partial tumor reduction. The diagnosis came back as Grade 4 glioblastoma, and it’s pretty much taken over her entire left hemisphere. They've been talking about edema and things like that. Right now she’s on meds to deal with the swelling, but she's just too weak for any major treatment. I'm honestly not sure if she'll even get radiation or chemo. The doctors are saying she’s too unstable for Gamma Knife or other procedures right now, so they're waiting for her condition to improve before deciding on a treatment plan. But her condition is actually getting worse, and they've already got a ventilator ready. They're giving her a few months, but... a few months of what??? I see people posting about tumor cases here, so I wanted to ask: is there any clinic in the US or maybe Europe where someone could step in and temporarily slow down this progression? The thing is, my wife just gave birth to a beautiful baby girl 18 days ago—literally two days after her mom and my child's grandmother was rushed to the hospital. My wife is struggling so much emotionally, and I think it's affecting her breastfeeding and everything else, which makes sense given the situation. It’s such a mess because we can't even fully celebrate our baby or properly grieve; we're just caught between these two extreme emotional extremes. Our only wish is for Grandma to wake up and meet her granddaughter. That would bring so much peace to my wife and our whole family. Is there any hope? THANKS