Support for families dealing with cancer and other serious illnesses (Part II)

I am absolutely losing my mind with anxiety right now. These little red spots have started popping up all over my arms, and I did some digging and found out they might be side effects from chemo due to a drop in my platelet count... so now we're just sitting here in the ER waiting for the lab results to come back.

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.

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.

Thanks for the recommendation. That documentary was absolutely beautiful and eye-opening. It’s actually quite terrifying how we just don't talk about death at all, when we really should—after all, none of us can outrun it.

On another note, we finally brought Dad home, so Mom and I are handling his care now.
There's a certain sense of peace in doing this. I can see he's happy; he sleeps so soundly, even though he's completely immobile and relying on a feeding tube.
He’s dealing with pressure sores, and he's even developed a wound on his heel. But I've embraced it all; somehow, I've managed to find my footing. Right now, my only goal is seeing him sleep peacefully, knowing he's comfortable, full, and clean.

Everything has shifted for me. I've grown up through this, and this might sound terrible to some, but in a way (those who have walked a similar path will understand), Dad's illness was the best thing that ever happened to me. Not just for me, but for everyone around me. I regret that I didn't cherish life more before, or that my mind was always drifting somewhere else. But it's never too late for a second chance. Dad prepared me for life and taught me such wonderful things; he'll live on through me as long as I'm in this world. 🙂
He lived a wonderful life, surrounded by love, and he truly loved his family and those around him. I am just so grateful that he isn't in any pain.

I met a nurse at the hospital who told me her husband passed away from a glioma, and that he had been in that same state of immobility for three years. It left me feeling a bit shaken.

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).

I know this is a bit of an off-topic post, but please send me a PM if anyone is looking for Prosurge or Supportive. I have some leftovers from my mother, who unfortunately lost her battle with stomach cancer last November. Since the Prosurge (13 units) expires in April and the Supportive (69 units) lasts until June, it seems like a waste to let them go to waste. I'm happy to pass them along for next to nothing—well below market price—to anyone who needs them.

I haven't been able to log in over the last few days... We’ve been riding a bit of a rollercoaster with good and bad days, but overall, there's a sense of positivity taking hold. Some of the preliminary results suggest that the chemo is actually hitting the mark, though I'm trying not to get ahead of myself—I'm a bit too terrified to celebrate just yet. That said, seeing how much of a boost this gave Dad today was everything, and honestly, that's what matters most.

Does anyone else deal with intense night sweats following a tumor diagnosis? My dad has a rare type of small bowel tumor called Gist; he's had surgery, but these night sweats have become quite frequent lately. Is there any way to find relief?

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."

Well, angina finally caught up with me too; I guess it’s just that time of year... As far as illnesses and, unfortunately, deaths go, this year has been an absolute disaster. In just the first two months of this year, I've attended more funerals than I did during the entirety of last year. Most of them were due to some form of carcinoma.
steelbadger22, my dad also deals with terrible night sweats—he goes through about five pairs of pajamas in one night... If there is any kind of help out there for that, I would love to find out!

Hello everyone. Unfortunately, life has forced me to come here looking for some guidance. My father was diagnosed with small cell lung cancer with liver metastases just a month ago. Things moved incredibly fast; he already had his first round of chemo (the PE protocol) on March 10th at a clinic near our small town, USA. I drove him myself. Physically, he seemed fine—just a week prior, he was out working in the vineyard. Mentally, however, the diagnosis hit him hard. He admitted he’s been feeling "off" for about a year now—dealing with forgetfulness, depression, and a certain mental fog—which makes us worry the cancer might have reached his brain. We have a brain CT scheduled for March 15th.
He received his chemo intravenously on Friday, March 10th, followed by oral doses over the weekend. By Sunday, he was exhausted, though still upright. Monday brought a significant decline; the weakness set in, and he could no longer stand. Tuesday was even worse. Today, Wednesday, we’re taking him for that brain CT, and he has to go in a wheelchair because he can't support his own weight. Thankfully, the CT came back clear, which was a massive relief for all of us. Yet, despite that good news, his condition continues to deteriorate. It’s now day 11 since the treatment started. He’s in diapers now, and if he tries to get up, he collapses immediately. My mother is struggling immensely because he's a heavy man and she simply can't lift him. She has to feed him because he can't manage on his own; he seems semi-conscious, barely speaking, with his head constantly dropping. I don't know how else to describe it, but he looks like a 90-year-old battling Alzheimer. They did some blood work at the house the day before yesterday, 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 level of decline a standard side effect of chemo, and can this state of being last this long? We are completely lost and overwhelmed. Apologies for the long post, and thank you in advance for any help or advice you can offer.

Hey everyone. Honestly, I've reached the point where I have to come here looking for some advice and help. About a month ago, my dad ended up in the hospital because of gallbladder issues, but it turned out to be something much heavier: Multiple Myeloma. It was the first time I’d even heard of the disease, so naturally, I’ve been spiraling down internet rabbit holes ever since. He’s already started chemo and, so far, he’s handling it incredibly well—no side effects yet. But now we've hit a snag with low white blood cell counts, so they had to pause his last session. He's just waiting it out for a few days. I haven't been able to wrap my head around everything yet, but is there anyone else here dealing with this same diagnosis? Or maybe someone who actually knows the ins and outs of this thing? Thanks in advance for any help you can give.

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?

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.

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.

ruggedfox11 said:Is it possible that the side effects from chemo are only hitting him now? He received his last dose for this cycle just this past Saturday. Today, he’s complaining about nausea, dizziness, and weakness in his legs. His head was pounding earlier this morning, but the Advil finally knocked that part of it down. Is this delay normal?

Is it even possible? Could it really be?🕺

Anthony Rodriguez7 said:Hello everyone in this thread. Unfortunately, life has also steered me here in search of some guidance. My father was diagnosed with small cell lung cancer with liver metastases just a month ago. Everything moved at lightning speed; he actually had 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 hard. He finally admitted that things have felt "off" in his head for about a year now—lots of forgetfulness, depression, and a general mental fog—which makes us worry that it might have spread to the brain. We have a CT scan of his brain scheduled for 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 incredibly weak, though he could still manage to stay on his feet. By Monday, things took a turn for the worse; the weakness became so intense he couldn't even get up. Tuesday was even harder. Today, Wednesday, we’re driving him for that brain CT scan, and he has to go in a wheelchair because he can't stand at all. Thankfully, the CT scan came back clear, which was a massive relief for all of us. However, his physical condition continues to decline. It's now day 11 since his chemo started, and he's in diapers. If he tries to sit up, he collapses immediately. My mother is struggling immensely because he's quite heavy, and she simply can't lift him. She has to feed him because he can't do it himself. He seems semi-conscious, barely speaking, and his head just keeps dropping; I honestly don't know how else to describe it other than saying he looks like a 90-year-old suffering from Alzheimer. They did some blood work at the house the day before yesterday, and while most results aren't terrible, his CRP is extremely high at 114.
Has anyone here dealt with a similar situation? Is this level of exhaustion a side effect of the chemo, and can this state of being last this long? We are completely lost and overwhelmed by all the questions. Apologies for the long post, and thank you in advance for any help or advice you can offer.

My dad has a similar diagnosis. 😢 The only difference is that instead of small cell, his is adenosquamous. He just finished his third treatment today (which they explained is essentially the first part of his second cycle). Honestly, this news is all still very raw and painful for us too, and we still have so many unknowns hanging over our heads. All I can offer you right now is a virtual hug...

ruggedfox11 said:The only thing I can help you with is those white blood cell counts. My husband just feeds them nothing but pancakes and bacon.

Thanks for the advice...🐔

Dear ruggedfox11 and Robin Diaz4,
Thank you for reaching out. I’m sending those hugs right back to you, along with my hopes for a quick recovery and nothing but positive diagnoses... It’s truly a shame we all find ourselves meeting in a place like this.
ruggedfox11, regarding your question about whether side effects can show up a few days late—absolutely. My dad's condition took such a sudden turn after just one round of Chemo, despite him being a relatively healthy, physically strong guy (and he's only 60, if that matters). I've done a lot of digging into this, and it turns out many people don't feel the brunt of the side effects until day 5, 6, or even 10. A neighbor of ours has lung cancer—a different type than the micro kind—and she often found the worst of it hitting her between day 6 and day 13. I'm sure there are others here who have experienced similar timelines or know more than I do; I haven't managed to catch every single post yet.
As for my dad, I finally got a hold of his pulmonologist/oncologist yesterday. Once I explained what was happening, he immediately suggested we contact a neurologist and get his ammonia levels checked. Because of that, an ambulance rushed him to the hospital this morning for those tests. My mom is with him while I'm stuck at work, and frankly, I don't think I need to explain how much I'm struggling to function right now. Reading some of your posts, I realized I'm going through the exact same thing... His illness is constantly looping in my head. I'm so scattered that when my kids try to talk to me, I realize I haven't heard a word they said. I suppose that's just part of the territory; these situations are brutal.

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. :-)