I also donated blood to the Anne Rukavina Foundation—among the first in my city to do so. Honestly, by the time everything actually comes to life, I'll be quite old. But I did it primarily to set an example for those around me, especially the younger generation, to encourage them to step up. You never know if it will be you or someone close to you who ends up needing help. I have children, grandchildren, nieces, their kids... I care deeply that at least they live in a world where every single medication is covered, where nobody has to hesitate to ask their doctor for the absolute best medical treatment, and where we aren't waiting months just to get basic tests done... I sincerely hope for all of that.
Rose, keep your head up! By the way, have you reached out to the Jedro Association over in Jordan? I believe they have plenty of useful advice. Sending my regards to all the fighters out there.
This might actually be a step in the right direction regarding how patients and doctors communicate, though it probably doesn't belong in this specific thread—maybe we should start a new one:
»American Medical Association« for healthcare worker rights WASHINGTON, D.C. - A new Association dedicated to promoting the rights of healthcare professionals, known as "Prav-zdrav," has been established. Their mission focuses on advocating for nurses, radiology technicians, pharmacists, and physicians. The group intends to shine a light on the daily communication breakdowns between patients and their families, as well as the frequent disregard for the basic human dignity and professional expertise that staff face every day. In their official statement, they made it clear they aren't looking to challenge patient rights; rather, they want to point out that the healthcare provider isn't always the one at fault when things go wrong. They are planning to launch a website to document these issues and will be hiring a law firm to help resolve them. Dr. Damir Gugić, the Association's president, noted in a press release that they aim to use the media to discuss the state of the American healthcare system, highlighting that medical professionals continue to provide far more care than the limited material and human resources allow. [B. L.]
Lisa White54, please share some specifics regarding what exactly is going on with your husband. It seems like my husband's cancer is very similar to his, so naturally, I'm interested in every detail. On September 22nd, you mentioned he was back home after being discharged from the hospital and that you needed to call about the biopsy results. Well, yesterday he already underwent a new bronchoscopy. Where did this take place? And why? Is it actually an enlarged lymph node, or are we looking at a new tumor? Thank you!
Look, people, you have to give credit where it's due. You have to acknowledge the good experiences and those moments when the staff is actually decent and warm—I've seen plenty of that in waiting rooms, hospital wards, and labs. Like slyseal28, I’ve had my share of positive encounters, and I’m not ashamed to say so. Yesterday, after seeing the oncologist, we stopped by our local general hospital to finalize things. Our pulmonologist actually OFFERED us a few infusions "to help him bounce back a bit"—he noticed he'd dropped a few pounds. Once we agreed, I asked him when I should bring in the referral, and he just said, "Don't worry about a referral, the hospital is covering this!" That's how he handled the infusion yesterday, and today they're doing it again with some extra supplements "just so he can breathe easier," and told him he absolutely needs to come back tomorrow. How am I supposed to argue with that? When I ask for things, as I mentioned earlier, we get our CT results the very same day, and they schedule follow-ups as close to the initial appointment as possible. Even radiology is fantastic. The cooperation with the primary care doctor is seamless, and the lab is just as good—we have zero complaints. Maybe because of this heavy diagnosis, we’re simply "lucky" that doors are opening for us. My heart goes out to everyone who doesn't have it this easy, those who have to fight uphill against windmills... perhaps in the big cities, certain values have just been lost along the way.
Mišice07, thanks again for the advice regarding Taxol; I took it all to heart. Even though it hasn't been prescribed this time—the oncologist decided to hold off, saying it's our last line of defense and we still have room to move forward with Tarcev—we actually started the 7th box today!
Lisa White54 said:It’s about this: we got the CT scan results back from our local hospital, and it shows a tumor measuring 20 x 13 mm, along with pleural effusion and some collections of air and gas. The doctors who reviewed the scans told us everything looks fine. I compared them myself to a CT scan from Jordan back in 2005, where there was a tumor in the exact same spot measuring 20 x 15 mm. I was convinced it was that same tumor—that it had stayed essentially the same size. I took the CT scan and the actual images to my husband's doctor at Jordan. He told me it's a new tumor; he said my husband hasn't had a tumor for a long time, that the old one disappeared, and that this is something entirely new. He claimed he didn't understand why there was fluid, gas, and air in the lungs. My husband stayed in the hospital thinking the CT showed his old, dormant tumor. I was in shock. Once I got home, I remembered there were two other CT scans between the 2005 one and this one. Looking at those, there really wasn't any tumor present. So, this is new. They performed a bronchoscopy on my husband and tapped the pleural effusion. And now... the doctor told me the bronchoscopy looked okay, no cancer cells found, and we’re just waiting on the cytology from the pleural fluid; he insists everything is just like before. When I asked him about the new tumor, he brushed it off, saying it’s nothing, maybe just a lymph node. He actually said he doesn't even trust the CT from our local hospital, and I even brought the images so they could read them themselves! He discharged my husband. I have to call today to hear the puncture results. I'm sure they'll say that's normal too. The tumor markers will probably come back fine as well. It's just that my husband isn't fine. He's doing worse. He's having increasingly severe pain in his shoulder, arm, and spine. He’s started losing weight. I mentioned it to the doctor, but again, he said everything is fine. Everything is "good." I don't know what to think anymore. Is the CT lying? Should I seek a second opinion elsewhere? Where? I'm terrified the doctor is just trying to spare me the truth, or that they don't want to—or can't—treat my husband, so they won't tell us. Honestly, I don't trust anyone anymore.
Dear Lisa White54, thank you for responding. We just got back from the hospital—we were there from 7:00 AM this morning until 11:30 AM waiting for our oncologist, and basically, here is the situation: even though we read ourselves that it represents a minor progression of the tumor (which is massive in its own right) and one suspicious lymph node, and even though they said the lungs are clear with no secondary issues... the doctor described it exactly like that. But when we insisted on questioning that "enlarged lymph node" which wasn't on the last CT, he very patiently told us to just get a new CT at our local hospital in about fifteen days. He wrote a referral for it and even suggested that, if possible, the reading be done by a specific specialist—who, by the way, is the Chief of Radiology. Given the coughing and fevers he’s been running, the doctor thinks it’s a false enlargement due to inflammation. Since the coughing caused him to vomit and lose weight, we stopped by our local hospital on the way home, and they gave him an IV immediately, recommending he come back tomorrow (without needing referrals or anything). Maybe this sounds a bit confusing; we're both exhausted (thank God, he ate well and is resting now), but I just don't understand why they won't be straight with you at Jordan. Try reaching out to the head of the Jedro association; they operate out of Jordan and bring together lung cancer patients. One of the main head nurses there is named Sanda Karabatić. I have never spoken to anyone kinder than her. Whatever I ask, she explains it to me. She doesn't have a direct line, so just call the Jordan main switchboard and ask for Nurse Sanda; they'll put you through immediately. Pour your heart out to her. Good luck!
Lisa White54 said:It’s just a rough patch that will pass. Things will look better tomorrow. My husband goes through the same thing. There are good days and bad days. It isn't easy, but it passes. Don't lose heart. My husband drank whey once a day to help cleanse his liver. It actually helped. We got the CT results back. Thank God, nothing is happening. The tumor remains the exact same size (2 cm x 1.3 cm). It hasn't changed in three years. No metastasis. The abdomen looks fine. Heart X-ray was clear. Thank God.
Lisa White54, please tell us what happened so dramatically. You mentioned your husband's results were fine back on August 25th, so how did he end up suddenly being rushed to a Small town in the Midwest? Did he have sudden coughing fits, a fever, or anything like that? With my husband, the CT shows the tumor is still the same size and in the same spot as last week; everything else is okay, except for this increased coughing. I'm not sure if it's some virus or a cold exacerbated by the underlying illness. Have you dealt with anything similar?
gentlemoose62, thank you. It’s lung cancer, and Taxol will likely be our last line of defense. We’ve discussed this extensively with his oncologist, who recommended it to the hospital board, and they gave him the green light. He’s actually been cleared for Taxol since May, but we’ve been holding off because he’s been doing so well for the past year. However, the latest CT scan shows the tumor mass has increased slightly—though, thank God, there are no metastases; the lungs are clear, open, and free of pleural effusion. His blood work is perfectly fine (likely even better than mine, for that matter). On Monday, we’re heading to another city to see the oncologist. Given the various things I’ve heard regarding premedication for Taxol, do you think it’s wise to pack a bag for the hospital? Some people stay for a day or two, while others are there longer. Should he take something for nausea a day in advance, similar to how he did with other chemo drugs like Cisplatin? Rose and her husband deserve nothing but the best—it doesn't always have to be this grim. We met someone once who had "gallons" of fluid drained from his body—it was horrific. He was completely drained, his kidneys were failing, he was receiving albumin through an IV, and they had to tap his lungs. Now, after two months at home, he’s out every single morning for coffee! Good luck!
In the brief time I’ve spent on this Forum, I’ve come to realize that—whether people want to admit it or not—it’s unfortunately always the same group of people surfacing here, all bound together by the weight of serious illness. It feels as though the "newcomers" aren't exactly welcomed with open arms unless they speak the exact same dialect; if you don't fit their age demographic or specific vibe, you just get ignored. Take Lisa White54, for instance. She shows up here consistently, much like I do—and likely, she's dealing with the same sense of isolation that I am. But look, let’s give those of us who aren't quite sure how to navigate all the "smileys," "angry faces," and digital emojis another chance. We aren't angry at the healthcare system, nor do we have grievances against our doctors. Why? Because the disease is what it is. Our CT results were read for us immediately today, just as they were during our last check-up two months ago. They did everything within their power. Is a doctor to blame if the scan isn't good? Our oncologist tells us exactly what we need to know—what our rights are and where we hit walls. We are fighting just as hard as all of you to secure expensive medications, and our struggle doesn't have to be an "open wound" visible to everyone; rest assured, we have been hammering the authorities with letters and inquiries. Even our doctor would be the happiest person in the room if he could provide us with unrestricted access to the absolute best treatments—like the kind found at the Anderson Clinic in Houston. But given his current resources, he does the best he can for us, and we trust him. Now, for a specific request: it looks like we’re starting Taxol this Monday. We haven't been briefed on the side effects or the administration process yet. Does anyone here have experience with this and perhaps some insight that could help us?
Dear Melissa Kim45, please accept my deepest condolences. Your mother has returned her most precious gift back to God—life itself—and she will live on through you forever.
To everyone I’ve met on this forum, I wish you nothing but the best. I don't post much—hardly at all, really—mostly because I’m intimidated by how established this group of women is. It’s hard knowing how I’ll be received in a circle where everyone already shares such deep, collective pain. I’m a grandmother, and much like Angela Wright, I’m heading to the coast this morning. That’s about the only thing we have in common. I’m traveling with my seven-year-old granddaughter and my husband, who was diagnosed with lung cancer just a year ago. I don't need to explain to any of you how I feel; I trust you all understand. For now, he is doing "well." In fact, he’s the one driving us from the Midwest down to the central Gulf Coast, trying his hardest to hide his struggles from us—even though they are there. But we’ve made our decision: we live for today. When we wake up tomorrow, we make the most of that day. Stay brave. The healthcare system isn't always as bleak as it can seem, and not everyone out there is unkind; things just move at the pace they move. What your loved ones truly need is LOVE and your ATTENTION—things you simply cannot put a price tag on. A special hello to the fajterica (I’m not sure where she is, but I hope everything is alright with her and her husband)!
Listen, brightgardener8, when you're picking up test strips, stick to the smaller packs—they actually end up being cheaper. I usually grab the 25-count Accu check kits $40, whereas those 50-count ones are priced at over $100. It’s a rare instance where buying less actually saves you money. Usually, it’s the exact opposite.