I had everything all mapped out perfectly for before his fourth round of Chemo. My plan was simple: if they weren't going to order a PET/CT or a regular CT scan, I was going to step in—I’d just ask his primary care physician for the referral myself so we could finally get some real answers about what's actually happening. But then, I found out today that our "wonderful" local hospital here in St. Louis doesn't even have a PET/CT scanner on-site. Honestly, it’s just breathtaking how much I love living in this neck of the woods... total shitshow.
On the bright side, he seems to be doing a bit better. It’s warmed up lately, which I think helped because his leg has been swelling—just constant vein inflammation. His leg isn't bothering him quite as much, and he isn't coughing nearly as hard after using the clavocin, but man, he is putting on weight like crazy. He's pushing almost 200 pounds now, and since his legs haven't regained any strength or returned to anything resembling normal, I'm genuinely worried that having to carry himself around is going to absolutely wreck him.
Magda, you really don't have anything left to lose here... Everything you're dreaming about—it's all just your subconscious working overtime. Whether it’s trying to process deep-seated fears or perhaps hinting at potential solutions, who knows? It's all happening beneath the surface.
The human psyche functions quite differently when you're actually home; your surroundings play such a massive role in how you settle back into yourself.
From what I've read regarding that specific syndrome, it's often just a direct consequence of the illness itself—essentially being treated as part of the primary condition. But, as for those cases categorized as paraneoplastic syndromes... those are specifically triggered by the presence of microcellular tumors.
Rachel Williams, I’ve been following this for about ten years now. Most of them seem to be from that same generation—born anywhere from the mid-'50s to the late '60s. :-( My uncle, who actually got rid of it about a decade ago, keeps telling me his story, and honestly, it’s just a sea of negative experiences out there. I always try to look for the silver lining—to find those stories where the glass is half full and the outcome is positive—because, for us, it feels like we’re just barely keeping our heads above water.
Robin Diaz4, my husband is exactly the same way. He basically shuts everyone down—including me—around 3 p.m. when the health issues start acting up; he just won't let anyone talk about it. I end up applying heparin gel to his sores myself, and his oncologist was very firm: absolutely no antioxidants or Vitamin C while he’s undergoing chemo, with the exception of green tea. I usually make sure he takes a break from everything else during the week he's receiving treatment.
Angela Wright, I actually reached out to the oncologist because the chemo side effects were hitting him so hard he could barely function that day. The doctor told him to call immediately if he develops any fever or if these symptoms persist. All of his CT scans have been done with contrast, and he can't undergo an MRI right now because of the gel.
By the way, his lower leg has been swelling, which has been bothering him quite a bit. I'm feeling a little anxious about the possibility of a blood clot, even though my gut tells me it's just a circulation issue.
I’m honestly a bit worried about those pressure sores—even though he’s moving around more and everything, it just feels a little strange to me that they only just showed up now.
My heart goes out to your dad; I really hope his condition improves soon so they can discharge him back home. And please, don't feel like you only have to reach out when there's good news—sometimes you just need to vent the bad stuff to get it off your chest.
Question If anyone happens to know, I’d really appreciate some advice.. My husband has these two massive bruises on his backside. Does anyone know what I should use to treat them? I'm assuming they happened because he spent 20 days in the hospital—just lying there constantly
I’d like to follow up on what Robin Diaz4 mentioned. For us, it’s been nearly three months since his hospital stay ended, and two months since we first received the diagnosis. To be honest, I completely ignored the statistics at first—they just felt too abstract—and that second piece of advice about living one day at a time? That was actually quite difficult to put into practice. We had always functioned that way, but once the diagnosis hit, our entire world started revolving around "what if" scenarios and "what could happen," all centered strictly on his illness. Even though he seemed to bounce back and try to return to a sense of normalcy almost immediately after his first round of Chemo, I only recently realized how much I had become obsessed with his condition. It felt like everyone else—including myself—was suffering because we couldn't look past the diagnosis. So, I decided to shift my perspective. We've worked hard to turn things around so that we can all get back to a steady state and function just like we did before. We’re getting there, slowly but surely.
Anthony Rodriguez7 said:Right after I finished my last post, my mom called to tell me they're keeping Dad over in the hematology ward—apparently his sodium and potassium levels didn't bounce back after the IV infusion. They mentioned something about an electrolyte imbalance; does anyone here have any insight into what that actually entails?
Anthony Rodriguez7 said:Right after I posted my last update, my mom called to say they’re keeping Dad over in hematology—apparently his sodium and potassium levels haven't bounced back yet after the infusion. They mentioned something about an electrolyte imbalance... does anyone know much about that?
He had a CT scan done about two months ago. This thing moves incredibly fast, unfortunately—I’ve seen it happen with people close to me, which is hard to witness—but then again, I also have an uncle who absolutely beat it, so I suppose it really just comes down to the individual. Honestly, the situation you're describing with your dad takes me right back to where I was two months ago when everything started crashing down for my husband. He was this big, sturdy guy, maybe 260 pounds, and he just withered away to about 175... That electrolyte imbalance can definitely be triggered by Chemo. I actually have a PDF saved on my computer that my sister—who is a doctor—sent me specifically regarding blood work trends in oncology patients; once I track it down, I'll send it your way. I know it’s never a good sign when those numbers are low. Low potassium, for instance, can sometimes be linked to muscle mass loss (which was the case with my husband). Anyway, you'll see what they say soon enough. :-)
Anthony Rodriguez7 said:Dear ruggedfox11, dear Robin Diaz4, thank you both so much for reaching out—I'm sending those hugs right back to you. I’m truly wishing for nothing but a smooth recovery and hopefully some positive news regarding the diagnoses... It honestly breaks my heart that we all find ourselves meeting under these circumstances... ruggedfox11, regarding your question about whether side effects can show up a few days later—I absolutely believe they can. My dad's condition took such a sudden, sharp turn after just one round of chemo, even though he had been a remarkably healthy and physically strong man until then (and mind you, he’s only 60), so I've spent a lot of time researching and asking around. There are certainly people who don't feel the brunt of the side effects until day five, six, or even ten. A neighbor of ours is battling lung cancer (though a different type than the micro kind), and she often found that her hardest days hit somewhere between the sixth and thirteenth day. I’m sure there are others on this forum with similar experiences who might know more than I do; I haven't managed to catch every single post yet... As for my dad, I finally managed to get a hold of his pulmonologist/oncologist yesterday. Once I explained what was happening, he immediately advised contacting a neurologist and getting his blood ammonia levels checked... so, an ambulance rushed him to the hospital this morning for those tests. My mom is there with him while I'm stuck at work, and frankly, I don't think I need to explain how much I'm struggling to stay focused or function right now... reading some of your posts, I realized I'm going through the exact same thing. His illness is just constantly looping in my head; I'm so scattered that when my kids try to talk to me, I realize I haven't processed a single word they've said... I suppose that's just a normal reaction, though. These situations are incredibly heavy.
I know side effects can definitely be delayed, but our main worry is that while his brain scans came back clear, they didn't perform any preventative radiosurgery, so I've been terrified that something might have spread to the brain. I actually reached out to a colleague's husband, who is an oncologist, but he just suggested checking back in with the pulmonologist if the symptoms don't subside or if he starts developing any fever. Keeping my fingers crossed for my dad that it isn't anything serious. :-)
Anthony Rodriguez7 said:Hello to everyone on this thread. Unfortunately, life has led me here to seek some guidance as well. My dad was diagnosed with small cell lung cancer about a month ago, and it had already spread to his liver. Everything moved incredibly fast—he actually started his first round of chemo (the PE protocol) back on March 10th at our local clinic in a small town, USA. I drove him there myself; physically, he seemed fine—just a week prior, he was still out working in the vineyard. Mentally, though, he took the diagnosis very hard. He did admit that things have felt "off" in his head for about a year now—lots of forgetfulness, bouts of depression, and a general mental fog—which makes us worry that it might have reached his brain. We have a CT scan scheduled for his head on March 15th. He received the chemo intravenously on Friday, March 10th, followed by oral doses on Saturday and Sunday. By Sunday, he was already feeling quite weak, though he could still stay on his feet. By Monday, things took a turn for the worse; the weakness became so intense he couldn't even stand up. Tuesday was even harder. Today, Wednesday, we’re driving him for the CT scan, and he has to be in a wheelchair because he simply can't support his own weight. Thankfully, the CT scan came back clear, which was such a relief for all of us. However, my father's condition continues to decline. It’s been 11 days since his treatment began, and he’s currently in diapers; if he tries to get up, he collapses immediately. My mom is struggling immensely because he’s a large man, and she just can't lift him... she has to feed him because he can't manage it himself. He seems semi-conscious of his surroundings, barely speaking, and his head just keeps dropping. I don't know how else to describe it to you all, but he acts like a 90-year-old suffering from Alzheimer. A couple of days ago, they did some blood work at the house, and while most results weren't terrible, his CRP is extremely high—at 114. Has anyone else dealt with a situation like this? Is this a typical side effect of chemo, and can this state of being last this long? We are just so confused and overwhelmed by all the questions. I apologize for the long post, and thank you all in advance for any help or advice you can offer.
My husband is fighting the exact same diagnosis, unfortunately. It is wonderful news that his brain scan was clear! Mine went through her first round without any major side effects—she didn't experience that total numbness in her leg like some others do—but from what I've read regarding the PE protocol (cisplatin and vecrida), people definitely do experience extreme lethargy as a side effect. His CRP was never that high, though. I'm sorry I can't be of more help.
Michelle Lewis67 said:Hello everyone—unfortunately, I’ve found myself here seeking advice and a bit of support as well. About a month ago, my dad was admitted to the hospital due to liver issues, but it turned out to be a diagnosis of MULTIPLE MYELOMA. It was the first time I had ever heard of this condition, so naturally, I've spent a lot of time digging through information online. He has already started chemo and, so far, he’s handling it remarkably well—no side effects to speak of—but we've run into a hurdle with his low white blood cell count. Because of that, he couldn't receive his last round of chemo, so we're currently in a brief holding pattern for a few days. I haven't been able to wrap my head around everything just yet, but I was wondering if anyone else here is dealing with the same diagnosis, or if someone might have a bit more insight into how this disease progresses. Thank you all so much for any help you can provide.
The only way I can really help you is with those white blood cell counts. My husband tries to boost them by feeding him nothing but corn muffins and thick-cut bacon.
He’s complaining today about nausea, dizziness, and this weakness in his legs. He had a headache earlier this morning—though that finally subsided after taking some Advil. I can't help but wonder... is it actually possible to be feeling these side effects only now, especially since he just received his last dose of this chemo cycle on Saturday?
Robin Diaz4, that is such wonderful news! As soon as he starts feeling a bit more like himself, it really does suggest that the chemo is actually doing its job!
As for us, we haven’t even had the first X-ray yet—the doctor went on vacation, and she didn't bother to file his discharge paperwork from the outpatient clinic properly. We're still completely in the dark about how much has actually receded; it's just this constant, frustrating uncertainty and not knowing where we stand...
On top of all that, I've been struggling with a nasty case of strep throat and bronchitis for fifteen days now, so we're both currently stuck on Augmentin.
To make matters worse, over the last few days, my father passed away—heart failure—and a close friend of mine is facing kidney failure; he's only got three days left. It feels like everything around me is breaking down or fading away—almost as if someone is whispering, "get ready."
I just finished watching a documentary. Honestly, it wasn't nearly as harrowing as I had anticipated—I was bracing myself for graphic scenes of death and all that, but it wasn't like that. However, I can't help but feel like we should be practically forcing our doctors to watch stuff like this. I truly believe that in any profession, people ought to give their absolute best—to really pour themselves into it. If they don't have the weight of failure gnawing at them through the night, then what are they doing? Especially when they actually have the power to influence outcomes. They need to see patients as human beings, not just as broken objects or pieces of machinery that need fixing. A little empathy goes such a long way... The film was excellent, though it didn't actually trigger any memories of death for me. Instead, it sent me straight back to a year and a half ago when I gave birth to my little one. I remember the doctor telling me she’d be staying in the NICU indefinitely. I was in total shock; I just started sobbing, pleading for explanations, asking questions, desperately searching for some kind of comfort or reassurance. But there was nothing. She was stone-cold. Just... "Good day" and she was gone. It was revolting. And I felt that exact same detachment when my husband received his diagnosis. It was as if I had brought a car in for repairs instead of a human life. To be honest, I didn't cry while watching it. I think I've become somewhat numb to tears given everything we've been through lately. But truly, it has been a long time since I’ve seen something so emotionally resonant and educational—a real look at things from a different perspective, showing how care *should* actually be handled from start to finish.
On another note, my husband has started his third round of Chemo. He had an exam with the doctor yesterday beforehand. They hadn't quite tracked down those initial X-rays yet, so she couldn't do a direct side-by-side comparison with the new ones, but she managed to work with the CT scan results and said she was satisfied with the imaging and the overall progress. She mentioned we wouldn't be seeing her for much longer regarding the active treatment phase—she didn't explicitly say we were "winding down," but based on everything she said, I gathered that it's really just a matter of how many millimeters or centimeters of shrinkage we'll see. As things stand, he'll likely undergo one more round of chemo, and then it will be time for follow-ups and monitoring. (God, if they can't find that old X-ray, we'll just have to wait for the next CT before the fourth round of chemo anyway).
Well, I’m not quite sure what you’d say to that—but honestly, I don't know. After my husband finished his Chemo, he started breaking out in these massive bumps all over his legs, chest, and head... they looked just like severe acne.
Well, I'm not quite sure what you'd say to that—but honestly, I can relate. After my husband finished his last round of Chemo, he started breaking out in these massive, angry bumps all over his back, chest, and scalp... they looked just like severe acne.
Maybe I could find a day when he isn't home and take a look—even though, if I'm being honest, I’ve never been one to dwell on the whole concept of mortality. It's just... well, I'm the type of person who ends up in tears over those nature documentaries about animals, so I can only imagine how much harder this will hit me. 🙂 Vedran went in for his X-ray this morning. Comparing it to his old scans—those first ones from before the diagnosis—that swollen lymph node situated between his heart and lungs has almost completely vanished. At least, that’s how it looks to my untrained eye; on that initial image, it was totally obscuring the heart, but now you can see everything clearly. We just have to wait until Thursday for the doctor to confirm the details and tell us exactly how much it has actually shrunk—assuming it really has. I seem to recall reading somewhere that if the swollen lymph node is shrinking, then the beast itself is shrinking too. So, we’re sitting here today in this strange headspace—somewhere between genuine relief and that heavy, lingering tension as we wait for the doctor's word the day after tomorrow. On top of everything else, we finally figured out what was causing his cough—it turns out the little guy has laryngitis. Honestly, it’s just one thing after another. I really thought I had seen it all with my two older kids—I felt like I’d navigated every childhood illness under the sun—but then this one comes along, something completely new that none of them ever even caught. It feels like there's always a new hurdle waiting around the corner.
Thanks, everyone! I'm rooting for the rest of you too!
That documentary sounds interesting enough, though I don't really feel the urge to sit down and watch it. From where I'm standing—in my own little corner of the world—I just don't think true acceptance of mortality is something anyone can actually achieve. Personally, I still find myself half-expecting my grandpa to walk through the front door, even though it’s been fifteen years now.
Robin Diaz4 said:I've noticed that my dad's condition seems to take a turn for the worse right before his therapy sessions. It's pretty obvious that fear and stress play a massive role in how he's doing...
Fear and panic—I know firsthand—can completely shut down the body. For me, it hits my respiratory system (dealing with chronic bronchitis and a mild case of asthma); if I can't find a way to calm down, I struggle just to catch my breath. But with everything he’s going through, I find myself jumping at every little change in his condition. It's hard to stay steady when you're watching someone you love fight this battle.