Posts by Robin Diaz4

I’ve been diving deep into the world of dietary supplements and immune boosters lately, and honestly, the more I read, the more confused I feel. It seems like for every single page praising some miracle product, there are at least x+1 pages claiming that exact same thing is completely useless, if not outright dangerous. At this point, I have no idea if I should be taking anything at all or just staying far away from the whole aisle.

I suggested to my mom that she take some time off to care for Dad, but her employer basically told her they'd only consider it if he were terminally ill and completely immobile. Now, my dad isn't bedridden—and frankly, I refuse to accept the "terminal" label for as long as there's even a shred of a chance for treatment, regardless of how the law might define it. Does anyone happen to know the specific name of the law governing this? It would be incredibly helpful if someone could point me in the right direction!

Oh, please. My dad only listens to me. He won't even listen to Mom, so you can bet he isn't going to let some random stranger wander through the house right now...

I’ve been doing a lot of thinking today. My dad has been home for the last week or so, and luckily, I’m self-employed, which means I can work from home or just step away when things get chaotic. But honestly, how on earth do people manage this if they don't have that kind of flexibility? Dad’s condition is a total rollercoaster; one day he’s steady enough that he could actually make it to an office, and the very next, he barely has the energy to shuffle to the bathroom. It makes me wonder—what happens if a situation arises where there’s absolutely no one available to stay with him? I mean, hopefully, that won't happen, but life is unpredictable, isn't it? These thoughts have been circling my mind all day, because if I hadn't been home today, the mere thought of being away would have terrified me...
Basically, does a service like this even exist, or am I looking at hiring someone privately? How does the whole system work? Is there such a thing as hiring a medical professional to drop in whenever needed—someone I can pay for their expertise without them being a full-time presence in my house? For instance, maybe just twice a month? Or am I just dreaming up nonsense here?

Today started off on a pretty rough note, but thankfully, things have taken a turn for the better... Around 3:00 AM, a nasty cough caught him off guard, followed by a fever first thing this morning. He’s currently on antibiotics and seems to be feeling alright now, though I can't help but worry that tomorrow might undo all this progress...

Angela Wright said:On the days when someone is undergoing chemo, they aren't supposed to take any antioxidants because those things bind to free radicals, which could potentially weaken the effectiveness of the chemo itself. They should be taken during the recovery periods between cycles instead.
And both native propolis and beta-glucan are powerful antioxidants.

Wait, does that one-week window where the dosage tapers down from high to low also count as being "between cycles," or should you still avoid everything during that time too?

I try to find something to distract him every single day, but on days like today, it feels like an uphill battle. If nothing else, it looks like he’s been trying to medicate his depression with food—he absolutely demolished a massive meal!
Rachel Williams, I completely agree that your mother deserves that book. Personally, I’ll always maintain that having a positive mindset is worth more than any prescription; what good is the world's best medicine if you've already given up on yourself?
So, I have a bit of a silly question. My dad is starting a chemo protocol consisting of cisplatin and gemcitabine. The doctor explained that he gets one dose during the first week and a different one during the second, which completes one cycle. Then there's a two-week break before the next round starts. He's scheduled for four of these cycles in total. My "stupid" question actually concerns the dietary supplements we use, which aren't typically recommended during chemo treatment. Does this mean he can only take them during those two-week breaks, or should he avoid everything entirely until all four cycles are finished? I couldn't find a clear answer to such a basic question online, and my doctor seems to think all these supplements are just nonsense and that we shouldn't bother. We currently use native propolis and beta-glucan.

Anthony Rodriguez7 said:Thanks everyone for getting back to me and for all your replies. ruggedfox11, just so you know, bruising can actually be an early sign of pressure sores. We were actually just told by the staff at the hospital that a calendula cream from Dove (you can find it at CVS) is the best way to handle it. It’s pretty affordable, so it might be worth a shot if it helps.
Sadly, my dad is still in the hospital and things aren't looking great—they're mentioning something about paraneoplastic syndrome now... I honestly feel a bit guilty even posting because I don't have much good news to share, but I felt like I owed it to you all to check in.

Would that cream also help with bruising after blood work?
Regarding your update—please, just keep us posted. Don't ever feel bad about reaching out! We're all here to share the highs and the lows... honestly, this thread helps me stay sane through everything that's going on... I'm really hoping your dad starts feeling better soon!

Rachel Williams, thank you so much for sharing that story. Honestly, hearing accounts like yours provides such an incredible sense of encouragement. I truly wish my dad had that kind of outlook, but unfortunately, he’s the complete opposite. If he hears ten positive stories and then just one negative one, that single bad news story will completely crush his spirit for the rest of the day. Take today, for example: a friend stopped by to visit him while I was away at work, and the idiot decided to recount at least ten different examples of people who have passed away from various types of cancer over the last year. What an absolute moron. Instead of my dad feeling uplifted because a friend came to see him, he’s spent the entire day staring blankly into space, totally defeated. I honestly feel like giving that guy a piece of my mind!

Honestly, for the last month, I haven't even dared to leave my house. I was constantly paralyzed by this nagging fear that "something" terrible would happen the exact moment I wasn't around to witness it. But yesterday, I finally managed to have a normal Saturday. I actually went out for coffee with friends in the morning, and then—despite telling everyone I wouldn't show up—I ended up going to a friend's birthday party in the evening. Everything went perfectly fine, yet somehow, I still woke up that morning with that heavy sense of dread and that familiar knot tightening in my stomach. I just spent five minutes chatting with my dad, and thankfully, I’m feeling a bit more grounded now. We're changing his pain patch today, and he’s even being surprisingly chill about it, saying there's no rush since he isn't in any pain. Usually, around the third day before chemo, that patch is absolutely trashed because the pain is so intense. I am desperately hoping this is a genuine sign that the chemotherapy is actually doing its job.

Anthony Rodriguez7 said:Mom is with him right now while I’m stuck at work, but honestly, I don't think I need to explain much about how I'm managing to function... I've been reading through some of your posts and it hits home—I'm feeling the exact same way. His illness is just constantly looping in my brain; I’m completely scattered. My kids will be talking to me and I realize I haven't processed a single word they said... but I suppose that's normal. These situations are brutal.

It’s already been a month since we got the diagnosis. It has been the fastest yet longest month of our lives. I wouldn't say I'm "scattered" anymore; I've moved into functioning mode. Not exactly "normal" functioning, mind you, but I'm getting by. You've probably already stumbled upon the two best pieces of advice from this thread—first, stop obsessing over the future and just focus on today. That’s what keeps my sanity intact. If it's a bad day, damn it, we just grit our teeth and push through. If it's a good day, we soak it up. The second tip you mentioned yourself is vital: stay away from the statistics. Every patient is an individual. Personally, I stick to the success stories and skip everything else.
We actually had a fantastic day today because Dad is doing exceptionally well. I’ve noticed that since he started therapy, his pain levels have dropped significantly. For instance, two weeks ago, even with patches and extra slow-release morphine, he was still needing about four Advils a day. Now? He hasn't needed any pain meds for almost a week! We haven't even touched the Advil. He did deal with some side effects immediately after his first cycle when he ended up in hematology due to low platelets, but other than that, he's been fine. I decided to give him some raw propolis between treatments; he’d been taking beta-glucan, but I read somewhere that you should take a break after a month. Today, he even took a supportive supplement. His appetite is still there, and for the first time, his weight has finally started trending upward. I am truly, deeply hoping this chemo delivers the results we need!

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...

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!

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.

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.

ruggedfox11, that’s fantastic news if the beast is actually shrinking. I’m really crossing my fingers that the doctor confirms the same thing during the next checkup!

stormyfalcon68 said:My dad also dealt with intense pain, specifically in his bones and shoulders after Chemo, and those Transtec patches actually helped him quite a bit. The pain would usually kick in around the third day, right before it was time to swap out the patch.

Exactly, yesterday marked the third day of his current patch.
Today, I applied a fresh one, gave him a pill, and he’s practically a new man. Yesterday, however, was just brutal. Our doctor did a home visit; Dad’s breathing is still steady, and there’s no tenderness or enlargement in his liver upon palpation. Honestly, I’m starting to think everything somehow aligned perfectly so that all those major symptoms just... vanished. Aside from the pain, they’re simply gone.

Angela Wright said:Sending good vibes to everyone.
I just finished watching that documentary "acceptance of mortality" about terminally ill patients and how they face the end. There was one man with a brain tumor that really hit home. I kept having these intense flashbacks, and honestly, my husband and I spent most of the film just weeping together. It’s funny, because ten years later, everything I went through—everything I processed and realized back then—is finally being validated. For me, this is a lifelong journey that will likely continue until my very last breath.

I couldn't even bring myself to watch it; I started tearing up just reading the description...
Dad's pain is just relentless today. I'm heading back to the doctor later to see if we can bump up his dosage or something, because when he's hurting like this, I can't find any peace either. I haven't managed more than thirty minutes of sleep at a stretch for two days now.
Things haven't been this brutal since before he started chemo...

Best of luck, ruggedfox11!
We're heading back in for another round of consultations tomorrow...

I've started noticing that Dad's condition takes a noticeable dip right before his therapy sessions. It’s pretty obvious that the anxiety and stress levels are taking a massive toll on him...