Alex Hayes2 My dad is a veteran, too—we’ve actually been looking into things lately because we just filed his disability claim since he can't work full-time anymore. That said, he’s already planning to pick up some freelance gigs once he’s feeling better, even after the pension kicks in. Regarding legal rights, from what I understand (my mom is handling the paperwork and all the bureaucratic legwork), he should be entitled to a one-time lump sum payment as a veteran. The max amount is roughly $1333, though they usually determine the specific figure once the full application is submitted. He’ll likely also have coverage for medications and other medical supplements—I'm not 100% certain on the specifics of the latter, though. Mom is heading to the Social Security Administration this week to get the full rundown on what's required, so I'll update you guys once we know more. As for transportation, like > mentioned, he qualifies for assistance as an oncology patient. Regarding lodging—if by any chance they can't admit him to the hospital immediately—it might be a good idea to see if there's a local veterans' association nearby. It’s worth reaching out to them to see if they can help coordinate a place to stay.
Regarding my dad's actual progress—we’re fighting through it. He just finished his second round of chemo; this time he was on a standard PE protocol (with a slightly lower dose of etoposide), and he actually handled it pretty well. Our next cycle is scheduled for August 13th. We’re still giving him propolis every single day, and he’s eating apricot kernels daily too—about twenty a day. We have our own apricot tree at home, so we’ve been able to prep plenty for him. His back pain has eased up quite a bit; he’s still using patches, but he only takes the Sevredol when it’s absolutely necessary, which isn't often anymore. Most importantly, he finally started walking again. He’s using both crutches and someone is always right by his side—mostly because he still gets a bit anxious when his legs feel weak from being bedridden—but he’s doing great, and his spirit is incredibly strong. He's my favorite guy, my absolute hero.🙂
Susan Fowler35 said:Can you try calling Dr. Miller to see if you can order a consultation over the phone? And let me know if he charges just for his opinion on the test results—keep me posted on how it goes. My dad is in a similarly terrible spot where we can't get him anywhere. If he doesn't recover enough to sit up by July 15th, we're in trouble because he has his radiation appointment at the clinic on the 16th. The doctor told us that if he hasn't improved by then, they won't be able to proceed with the therapy and we'll just be stuck waiting for the end at home. It’s honestly mind-blowing to me that all this happens in just one month—someone tells you "that's it" and suddenly everything is over. But he just turned 56, so I'm going to do everything in my power to help him make it through a few more years, and I'm really hoping your advice helps too.
We went through the exact same thing with my dad. Just a month ago, he was out mushroom hunting—spent the whole week hiking through the woods—and then he ended up in the hospital because his ulcers ruptured. They wouldn't even give him a transfusion; it was like they expected him to just bounce back on his own. During those first few days in the hospital, they wouldn't even let him get out of bed, and the longer he stayed laid up, the weaker he got. It's been a little over a month now and he's still mostly bedridden. His back hurts, but his legs have just completely given out from being immobile for so long. Today, he actually told us to help him up, even if it hurts—he said he'd just endure the pain if it meant he could finally stand on his own two feet again. 🙂 He had a massive breakdown today; he was crying to my mom this morning, worrying about what’s going to happen to us. It hits him hardest when he thinks about my younger brother (he's only 17, the baby of the family)—those two are incredibly close. After that outburst, though, he told us he has to get out of that bed, no matter how much it sucks. My dad is a fighter.
I figured I’d check in and give an update... Dad’s been home since Tuesday. He finished his first round of chemo, and now we’re just playing the waiting game for three weeks until the next cycle. I actually went to see another oncologist for a second opinion—just to be sure—and she was pretty blunt about how bad things look. She was honestly baffled that they even started him on chemo given his liver enzymes and bilirubin levels, not to mention the anemia he's been dealing with ever since that damn bleeding incident. Before all that, his GGT was elevated, but she mentioned that, despite the tumors in his liver, his blood work could almost be considered "normal" by comparison. But after those ulcers ruptured, he really took a hit because he didn't get a transfusion (they decided it wasn't necessary at the time), and since he couldn't eat for a few days, things just spiraled—his liver numbers shot through the roof. Even though his latest labs show a slight dip—actually, a decent drop—he’s back to being anemic again. His hemoglobin is down to 78, and this second doctor was questioning how they even let him leave the hospital with levels that low. So, right now, we’re doing everything we can to boost his counts. He’s drinking homemade juice made of beet, carrot, apple, honey, and lemon, plus some propolis. We’ll do more blood work this Tuesday and see if a transfusion becomes unavoidable. For now, he’s mostly staying in bed because of some intense spinal pain, but he’s doing leg exercises every single day. We’re planning to start getting him up and walking a little bit soon; he’s got such a massive drive to get back on his feet. Aside from the back pain, he’s actually feeling okay mentally. I’m just praying his condition stabilizes over these three weeks before the next round—that this first dose actually does its job and brings that bilirubin down so he can stay on track with the treatment. Small cell carcinoma is a real nightmare. My dad just has terrible genetics—lungs have always been our family's Achilles' heel. His grandfather passed away from tuberculosis, his father died of smoker's bronchitis and was an asthmatic himself at 55, and now my dad is facing lung cancer at 55 too. It’s just... a lot. And yeah, the smoking definitely played its part, even though he quit four years ago. He’s always been a strong guy, never really sick, and he’s holding up surprisingly well mentally. He has the will to fight, and we’re just hoping he’s been given a fighting chance.
I picked up a piece of information during my consultation today that might be useful for some of you. The oncologist mentioned that with these occult (hidden) carcinomas—which is what my dad is dealing with—it’s most often small cell. Even when they can't confirm it with absolute certainty, the treatment protocols are based on platinum, essentially treating it as small cell because that’s statistically what it usually turns out to be.
Nancy Lee—thank you so much for the support. I’m keeping my fingers crossed for your dad; I hope he fights through this and wins, and that everything keeps going as well as it has so far.
To everyone else out there: keep fighting until the very end, because it isn't over until it's over. We need strength, positivity, and a little bit of luck. Despite the grim prognosis, I am NOT giving up!!
Hey fellow fighters, my Dad has been stuck in the hospital at the Mayo Clinic for a week now. Even they couldn't track down the primary tumor, so they did a biopsy on the liver metastasis this past Wednesday—turns out it’s small cell lung cancer. 😢 Honestly, ever since we found out there were spots on his liver a little over a month ago, I’ve just been praying it wasn't pancreatic or small cell lung cancer... and well, here we are. Sadly, nothing shows up on his lungs yet—not on the CT or the X-ray—it must be so tiny it's basically invisible to the scans. As for treatment, they started radiation on his spine because the pain has been brutal, along with a lower dose of chemo for now. His Bilirubin shot up to around 100 over the last week, so they're hoping he responds well to the chemo so they can eventually place a stent in his bile duct and ramp up the dosage. He actually started the chemo and the radiation yesterday; he's on Cisplatin, which I believe is the standard first-line treatment for this. Just to give you the full picture, he didn't have any symptoms until those pains in his groin and spine popped up two months ago—those were the first signs of the metastasis. Then, back in October last year, he coughed up some blood a few times in the morning—nothing huge, just specks—so I sent him to the doctor to get checked out. They did lung scans back then, and everything looked perfectly fine. My oncologist mentioned later that things probably started moving then. Dad knows exactly what we're dealing with—he knows it's the toughest type of lung cancer—but he’s staying positive and is ready to fight with everything he's got. Angela Wright, I wanted to ask—is it okay to give him raw propolis while he's undergoing chemo? I've also been giving him beet juice, and his blood work looks decent; he isn't even anemic anymore after that bleeding episode. Everything is more or less okay, except for that Bilirubin issue... Do you have any other recommendations besides propolis?
My dad's been home since Thursday, and we're just counting down the days until Monday when he has his follow-up appointment at the Mayo Clinic. He’s seeing the same surgeon who did the colonoscopy, so we're hoping they'll refer him to an oncologist and keep him inpatient so they can finally run those pending tests—the PET/CT and the biopsy. He’s still incredibly weak, honestly just lying there most of the time. His spine is killing him, too; he's wearing a brace, but it barely touches the pain, so he’s taking an extra Lumidol in the morning and evening just to cope. If it wasn't for that ulcer bleeding, I don't think he'd be in this state right now. We're trying everything to fix his blood counts because the anemia is hitting him hard—even though despite the tumor, his labs were fine when we checked them a month ago. We've been giving him beet juice and raw beets, plus some natural propolis to help his immunity. He was also prescribed Prosur and Ensure to drink, but he’s just not feeling it, so he won't touch them. We aren't forcing him, though—at least he still has a decent appetite and eats normally for breakfast, lunch, and dinner, which is one small mercy. The hardest part for him is the loss of mobility; he can barely get on his feet, let alone walk to the bathroom or even across the room. It makes sense, given how much the tumor has hit his pelvis and lower spine. He doesn't even realize how bad the bone involvement is. He knows about the liver issues, but from what we can tell, the doctor hasn't mentioned the bones yet, and we don't want to either—not while he's home, anyway. We don't want to trigger a depressive spiral when things are already this brutal. It’s heartbreaking because just three weeks ago—barely a week before the ulcer landed him in the hospital—he was out in the woods for hours every day picking mushrooms. Even with the pain back then, walking actually made him feel better. Now? He's completely helpless. Just trying to get up to go to the restroom is such an ordeal that his heart rate spikes over 100 and his blood pressure drops. When he's just resting, his BP is normal. He had a heart attack four years ago and has been on blood pressure meds since then, but he isn't taking them currently and his pressure stays steady. I honestly don't know what to say. It's gut-wrenching seeing him like this, and I feel so powerless to help. I'm really holding out hope that they'll start some kind of treatment, maybe even radiation on his spine just to take the edge off the pain. Despite everything, I’m staying optimistic—I am not giving up, no matter what.
Kevin Bishop10 and wiredotter75 — hang in there and don't lose heart. It’s all going to work out! I truly believe that. I'm not letting my dad go. It's not his time yet.
Hey everyone, I’ve been lurking on this forum for a while now, but today I’m the one stepping up because I really need some advice and maybe just a few kind words to get through this. It’s about my Dad—he’s 55, and until recently, he was a totally healthy guy. He used to smoke, but he quit five years ago after having a heart attack, and he was always pretty active with sports... Then, about three months ago, things started going downhill. He had constant diarrhea—several times a day—for about three weeks straight before it finally settled down. About two months ago, he started getting this pain in his right groin; he just chalked it up to a strain from playing a more intense game of table tennis, but then his lower back started acting up too. In the meantime, I practically forced him to see his doctor because of those bathroom issues, and we sent him in for blood work, urine tests, and stool samples to check for occult blood. His blood work looked great, aside from an elevated GGT, and his urine showed a tiny bit of erythrocytes and calcium oxalate, but everything else seemed fine. Out of the three stool samples he provided, only the third one came back positive for occult blood. Next steps were an abdominal ultrasound and a colonoscopy. The intestines looked fine—nothing found there—and the ultrasound showed all his internal organs were normal except for the liver. The liver is riddled with multiple echogenic nodules, some as large as 48 mm, which look suspicious for metastases. Since the ultrasound happened before the colonoscopy, the radiologist suggested they might be metastases from the bowel (since that's usually how it goes with men). However, the colonoscopy ruled out the large intestine as the culprit. That procedure was done on May 31st—so about a week and a half ago—and then, just a day later (on Saturday), my Dad ended up in the hospital because of GI bleeding. On Monday, he had a gastroscopy, and they only found two ulcers in the duodenum—which probably bled because of all the painkillers he’d been popping over the last week or so for his back pain—but his stomach and esophagus looked okay. They did another ultrasound, and the liver hasn't changed, but everything else looks normal. His tumor markers are mostly fine, though CA 19-9 was slightly elevated (49.1 when the limit is 37) and CYFRA was at 9 (limit is 3). We had an abdominal CT on Friday, and yesterday they repeated a CT of his upper body along with X-rays of his lungs and bones. He also saw a rheumatologist and a urologist; kidneys and prostate are fine, and his lungs look clear too. But the CT results were devastating: it showed metastases in the liver (the whole thing is affected) and metastases in the pelvic bones, the lumbar and cervical spine, the rib cage, and the shoulder blades. The oncologist decided today that they won't be treating him—they're just going to give him pain management. The absolute worst part is that they have no idea where the primary tumor actually is. Every single test we've done so far has failed to find the source. They won't even perform a biopsy on the metastases because his liver is in such bad shape that it isn't producing enough platelets, making an internal bleed too dangerous. We are obviously going to seek a second opinion, even though I'm painfully aware that we're looking at a terminal stage. I just can't wrap my head around the fact that they won't offer any kind of therapy—that they won't even try *something*. Tomorrow, we also have to get a mole on his back checked out, just in case it turns out to be melanoma, and then we'll see where we stand. Does anyone have any advice on what to do in a situation like this? We aren't from Chicago, and since none of these tests were done in Chicago, we're planning to head there to hunt for a second opinion. But where should we go, and who should we see? And is there any way to actually figure out where the primary tumor is hiding? Please, if anyone has any advice at all—anything!!!😢