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

I refuse to believe it’s gone to his head; things don't move that fast. It’s a huge relief that your husband is an oncologist—having someone to turn to when things get heavy is everything.
My dad finished all his tests, and honestly, it feels like we triggered a panic for nothing. The neurologist said everything looks fine on that front; based on the CT scan from last week, there's zero chance anything happened in his brain (ruggedfox11, I can't remember when his wife had her scans, but maybe this neurologist's input carries some weight here). His ammonia levels are normal, too.
The doctors told us not to overthink it or compare him to other patients. They say everyone is different, and that these symptoms could be coming from either the chemo or the illness itself.
But if you actually saw him... the change is hard to wrap your head around. Common sense and logic tell you something just isn't right, that there has to be more to the story. You find yourself stuck wondering whether to push back or just wait, and who exactly you should call. I was just scrolling through some posts and saw one where Angela Wright wrote to someone, "you'll find out 'wow' soon enough"... except in our case, this "wow" feels more like a "how is this even possible?" kind of shock.
The weirdest part is seeing the oncologist look startled, too...
All I know is that I'm praying for a miracle. I just want my dad back—the old version of him—even if it's just during the breaks between chemo rounds.

Right after I hit send on my last post, Mom calls to say they’re keeping Dad in the hematology ward. Apparently, his sodium and potassium levels haven't budged despite the IV fluids, and they're talking about some kind of electrolyte imbalance. Does anyone here know much about how that works?

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: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?

http://cloud.tapatalk.com/s/58d53577..._Lovasic-1.pdf

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!

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.

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.

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

Thanks for all the replies and for reaching out. ruggedfox11, those bruises could actually be an early sign of pressure sores. The doctors here at the hospital suggested using Dove calendula cream—you can find it at CVS. It’s pretty affordable, so it might be worth a shot to see if it helps.
Unfortunately, my dad is still in the hospital and things aren't looking great; they’re mentioning something about paraneoplastic syndrome... I honestly regret even posting because I don't have any good news to share, but I felt like I owed you all a response.

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.

I’m just dropping in to offer some support. Honestly, I don't have much specific news—good or bad—to report, so I usually stay quiet, but I am here every single day reading through all of you.
To be truthful, it has actually surprised me how many of us have checked in lately because a loved one is dealing with lung cancer. 😢I hope that sharing my mother's journey might offer even a tiny shred of hope to someone else... even though it was caught at Stage IV, we have been pushing through for nearly three years now. The cancer hasn't spread further into her lungs, there are no metastases to other organs, just those initial ones in the lymph nodes in her neck, and over this time, it has reached the bones. Despite all that, Mom is completely independent. It goes without saying that I am incredibly proud of her and her mental strength, beyond words. ❤️

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!

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!

One of my kids unfollowed this thread. I was actually sitting here wondering why everything had gone quiet, thinking maybe everyone was doing fine, and then I log in today only to realize I've missed two whole pages! 😣

Anyway, regarding those brain CT scans for the paralysis. Were they done with contrast?
I’d strongly suggest getting an MRI of the head with contrast instead. These kinds of neurological deficits and paralysis—especially when it hits just one side of the body—simply don't happen out of thin air without some kind of visible head trauma. It is absolutely critical to get this handled immediately; if we are looking at brain metastases, they need to start radiosurgery right away!

Robin Diaz4 said:*Rachel Williams*, thank you for sharing this story. Tales like yours are incredibly encouraging. I wish my father had that kind of resilience, but unfortunately, he doesn't. If he hears even one negative story for every ten positive ones, that single negative account will crush his spirit for the entire day. Take today, for instance. A friend stopped by to visit him while I was at work, and the idiot proceeded to rattle off at least ten examples of people who have died from various types of cancer over the last year. What an absolute moron. Instead of my dad being in good spirits because a friend visited, he’s spent the whole day staring blankly into space. Honestly, I’d love to give that guy a piece of my mind.

Honestly, I could write an entire book about my mother’s strength—maybe even build a monument to her for her children. This is already her second bout with cancer; the first was back in '98, breast cancer that had already spread to the lymph nodes. They barely gave her a fighting chance. They had to remove the breast and some lymph nodes, which left her arm with limited mobility. She endured six cycles of chemo and 30 sessions of radiation, and she didn't just pull through—there wasn't even a trace of cancer left until this summer, when this new thing appeared on her lungs. And yes, it would be a miracle if she recovers from this now, but then again, it's a miracle that she's even standing today. 🙂 When they first confirmed the diagnosis, we both broke down crying. Afterward, we went to the hospital cafeteria for the best coffee in the city and made a pact: we’ll keep moving forward together, heads held high, just like we always have. She wants to live to see her grandkids grow up and play with them, and whatever she sets her mind to, happens. 🎉

She used to work in a building that was confirmed to be riddled with asbestos. Without exaggerating, over 80% of the people there developed cancer, and very few are still alive. Even with top-tier doctors, the most critical factor in this battle is your mental state and your will to live—as long as that holds up. Find things that will bring your father joy and fill his mind with those thoughts, so he can find the willpower to keep pushing forward for as long as possible.

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.

Robin Diaz4 said:I find something new to nitpick about him every single day, but on days like today, it’s an uphill battle. If nothing else, it looks like he's trying to eat his way out of depression—he absolutely demolished his food today! Rachel Williams, I totally agree that your mom deserves that book. Personally, I’ll go as far as saying a positive mindset is worth more than any prescription; the best medication in the world won't do a damn thing if you just give up on yourself.
So, I have a stupid question. My dad is on a cisplatin and gemcitabine chemo protocol. The doctor explained that he gets one dose during the first week and a different one the second week, which makes up one full cycle. Then there's a two-week break before the next round starts. He's scheduled for four of these cycles. My "stupid" question is about the dietary supplements we use, since they usually advise against taking them while undergoing chemo. Does that mean he can only take them during those two-week breaks, or should he avoid them entirely until all four cycles are finished? I couldn't find a straight answer online, and my doctor thinks all these supplements are just nonsense and tells us not to bother. We're currently using native propolis and beta-glucan.

On the actual days he's receiving chemo, he shouldn't be taking any antioxidants at all. They bind to free radicals, which means they could potentially neutralize the effectiveness of the chemo itself. You want to save those for the gaps between cycles to help with recovery.
Keep in mind, both native propolis and beta-glucan are potent antioxidants.

Robin Diaz4 said:I find something new to worry about regarding him every single day, but on days like today, it feels almost impossible. It looks like he’s been trying to eat his way through the depression; he ate an incredible amount today. Rachel Williams, I agree that your mother deserved that book, and I'll maintain that a positive mindset is worth more than any medication. What good is the best medicine in the world if you just give up on yourself?
So, I have a stupid question. My dad is starting a cisplatin and gemcitabine chemo protocol. The doctor explained that he gets one dose the first week, a different one the second week, and those two together make up one cycle. Then there's a two-week break before the next round. He's scheduled for four of these cycles. My stupid question concerns the dietary supplements we use, which aren't usually recommended during chemo. Does that 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 an answer to such a simple question online, and my doctor seems to think all these supplements are just nonsense and nothing should be used. We are currently using native propolis and beta-glucan.

As for native propolis, I don't know much about it other than how highly people praise it, but my mother has severe allergies to bee products, so we didn't even bother trying it. Now, regarding beta-glucan, I was immediately drawn to it because I read so many positive things, so I went to discuss it with my mother's primary care physician (who is actually quite open to alternative options). What she told me was that she thinks there isn't enough research on these things. While it's a powerful antioxidant and promotes cell regeneration—or something along those lines—and might benefit healthy cells, she would rather not use it for fear it might also encourage the growth or multiplication of tumor cells. That was the gist of her explanation; it really boiled down to the fact that she wouldn't dare try it herself due to the potential risk of tumor growth. I still find myself wondering whether we should try the beta-glucan or not, but my mother trusts her doctor's opinion, and I don't intend to force her into anything.

My mother is the type who believes in Western medicine, yet she doesn't reject help from alternative sources either. So, what we are using during chemo and radiosurgery is Zeolite (which helped with her nausea—she only vomited once after the last chemo session, and otherwise, there wasn't even a hint of nausea), Taheebo tea, and Gurana tea, drinking about a liter of each (though she never actually drank that much, she certainly tried). At the hospital, they told her to drink as much of these "healthy" teas and water as possible on the days of chemo and for a few days afterward to flush everything out of her system as quickly as possible. Additionally, we are using RS oil, which is even mentioned in official documentation. The opinion of the doctor in our Small town, USA, and our primary care physician has been positive on this matter, especially since my mother is cooperative; if the need arises for repeated chemo or radiosurgery, they know she won't refuse treatment.

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?

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.