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

Lisa Lopez75 said:Hey guys, I really need some help if anyone has the inside scoop—does anyone know if any oncologists here in the US will actually write a prescription for valganciclovir (Roche's Valcyte) when someone is diagnosed with glioblastoma? If you have any info, please shoot me a DM. Thanks a million in advance!

Hey there,

did those pills end up helping your dad at all?

Today marks the first day of his fourth round of Chemo.
The blood work came back looking extra good—the markers have dropped quite significantly; the NSE went from around 400 down to 69, and the LDH dropped from about 500 to roughly 250. :-)
His doctor is being difficult again, but the one who actually adjusted his treatment told us that after this fourth round, they’ll run a CT scan and then let the specialist team decide on the next steps for his treatment plan.
I’m feeling a bit lost here—who do you even complain to if the radiologist refuses to approve preventative brain radiation, which is standard protocol for small cell?
Should I push his doctor harder? Make a scene? Pull some strings?

By the way, his cough is just lingering from bronchitis, so he’s getting another inhaler and some drops for nebulizing. If anyone has any suggestions for something effective, I’m all ears. :-)

On another note, we dealt with more rudeness from the medical staff today. The doctor that the nurse called over to prescribe his meds spent her time chatting away with a colleague instead of focusing. When she finally showed up, she actually stated she "wasn't going to bother examining him"—clearly referring to my husband. And when the doctor who actually performed the exam arrived, she asked if we thought we should grab a chair for her... as if she hadn't just finished gossiping! Honestly, I wasn't even angry, just stunned that someone who spent all that time chatting was supposedly there to treat patients. It was just incredibly unprofessional.

It’s just exhausting. I really want to hold them accountable for a little longer. People aren't machines, you know... it’s just terrible how they act.

But thank God I can speak my mind. :-D

ruggedfox11 said:It’s the first day of the fourth round of chemo.
The blood work looks incredible; the markers have dropped quite significantly. NSE went from about 400 down to 69, and LDH dropped from roughly 500 to around 250. :-)
His doctor is back to being difficult, but the one who adjusted his treatment told us that after this fourth round, they'll run a CT scan so the team can decide on the next steps for treatment.
Who is there to complain to if the radiologist refuses preventive brain radiation, which is standard protocol for small cell?
Should I pressure his doctor? Make a scene? Pull some strings?

By the way, his cough is just from bronchitis; he’s getting another inhaler and some drops for inhalation. If anyone has any suggestions for something effective, I’m all ears. :-)

On another note, we dealt with the typical arrogance of our doctors again. The doctor the nurse called over to prescribe the medication spent her time chatting away with a colleague instead of focusing. When she finally showed up, she stated she "wasn't going to examine him," referring to my husband. And when the other doctor—the one who actually examined him—asked if we thought we should offer her a chair, it wasn't because she came here to chat. I’m not saying five or six times that since she’s been chatting all this time, she probably came here to gossip rather than actually treat people. It’s infuriating.

Pathetic, truly pathetic. I’ll be pulling their permits for a little while longer. They aren't machines, you know... It’s terrible.

But thank God for my way of speaking. :-D

Thank God for your way of speaking... I have to agree... sure, there are exceptions, but most don't deserve the grace.🙂

For bronchitis or pneumonia, homemade bay leaf syrup always worked wonders for my cough.

That’s fantastic news about the markers! 🙂 As for the doctors' attitudes, we’ve been lucky enough to encounter nothing but politeness so far... at least, that's the silver lining. Though, my dad interprets that very politeness as a red flag; he’s convinced they’re just being nice because they're "sugarcoating things" and that his actual condition is way worse than what they’re letting on. Regarding talking to others who have walked this same path—unfortunately, much like ruggedfox11 mentioned, everyone we knew with that specific diagnosis has already passed away. A friend of my dad's is dealing with a completely different type of cancer and is also undergoing chemo right now. This guy actually rolls up to our place on a bicycle (!) which is wild, considering just a few months ago he looked like a walking skeleton who could barely move. He’s gained his weight back and feels better than ever. He keeps trying to convince my dad that he’ll pull through just like he did, but Dad just shuts it down, insisting he isn't quite that lucky. End of story.

Rachel Williams said:Thank God for your way of looking at things... I have to agree—while there are exceptions, most people just don't deserve it.🙂

Personally, whenever I’ve dealt with bronchitis or pneumonia, a homemade bay leaf syrup was my absolute go-to for managing the cough.

Thanks, I'll whip something up for him :-) even though he isn't much of a fan :-)

He actually shares that same mindset, but when it comes to doctors? He’s smaller than a grain of sand. Men...

If my wife were in his shoes, she probably would've walked away with a plate of prosciutto and a bottle of bourbon too, haha.

Come on, Robin Diaz4, they're just like mine...
It’s almost like they're brothers, haha.

We’ve just finished his fourth cycle of Chemo today. He’s feeling a bit nauseous, but overall, he’s doing alright...

People were driving me absolutely crazy yesterday—honestly, I can barely even remember what I wrote earlier...
Anyway, the doctors gave him some kind of "vial" ampules for inhalation to help with bronchitis, which should hopefully cut down on the coughing a bit.
I have this theory of my own—since the lower lobes of his lungs were being blocked by the tumor, now that it’s finally receding, it's essentially clearing the path for those lower sections, and I suspect that might be another reason why he's coughing so much.

Does anyone know if it's okay to take Advil for the nausea, or maybe some Pepcid?

ruggedfox11 said:He's finishing up his fourth round of Chemo today. He's feeling a bit nauseous, but overall he's doing alright..

Honestly, they drove me absolutely crazy yesterday, so I can't even remember what I was typing before..
Anyway, he's getting some kind of "vial" ampules for inhalation to deal with bronchitis, which helps tone down the coughing..
Here's my theory: since the tumor was blocking the lower lobes of his lungs, now that it's finally shrinking and clearing a path for those lower sections, that might be exactly why he's coughing more.

Is it okay to give him anything for the nausea, like Reglan or Pepcid?

Are you guys using one of those compressor nebulizers, or something else?
When dealing with those kinds of irritations, inhaling a hypertonic solution can really help, so give that a shot. You can pick it up over the counter at a pharmacy like CVS without a prescription. It’s basically just standard saline but with a higher concentration of NaCl.

Angela Wright said:Do you guys use one of those compressor nebulizers, or how do you handle it?
For those specific irritations, inhaling a hypertonic solution can really help—definitely give it a shot. You can actually pick it up over the counter at any drugstore without needing a prescription. It’s essentially just regular saline solution, but with a higher concentration of NaCl.

Using a compressor nebulizer is honestly a total game-changer! My only concern is making sure the heat doesn't cause any internal damage within the bronchi or lungs—you know, like if it interferes with the healing process or messes with a fresh wound area, or something along those lines.

The stuff they give you in the clinic is usually some sort of cocktail involving Ventolin and a few other things—it's actual medication. Personally, whenever I'm dealing with bronchitis, I prefer using Bisolvon or Bisolex through the nebulizer.

I just wanted to double-check—can I find that hypertonic solution at a local pharmacy?

And would sea water spray be helpful too?

ruggedfox11, I honestly can't remember if I already asked you—is your husband still in the hospital, or has he made it back home? Also, what kind of nebulizer are you all talking about? (Good grief, there is still so much I have yet to learn)...

Robin Diaz4 said:ruggedfox11, I can't quite remember if I asked you earlier—is your husband back home now, or still at the hospital? And what kind of nebulizer are you all talking about? (Goodness, there is still so much I have yet to learn)...

He's home now :-)
He goes into the outpatient clinic for his chemo sessions. He actually spent 20 days in the hospital before we got the diagnosis, and he stayed put until he finished his first round of chemo. Since then, he’s just been heading in for day treatments.

Regarding the nebulizer—it's one of those devices you typically see in doctor's offices or hospitals. Personally, whenever my bronchitis flares up, I head over to my physician, and they'll hook me up to one for a bit; it really helps clear things out. He's pretty easygoing about going to see his doctor, but since you shouldn't try inhaling hot steam at home, I went ahead and bought him an electric one. It'll probably come in handy for me too, and hopefully for our little one down the road, God willing.

ruggedfox11 said:Using a nebulizer is the way to go! On a few occasions, I've wondered if the heat could cause internal damage within the bronchi or lungs—you know, like how a fresh wound heals, just something along those lines.

This specific inhaler seems like some kind of mix involving Ventolin and something else; it’s a real medication. Personally, whenever I deal with bronchitis, I usually reach for Bisolvon or Bisolex in an inhaler format.

Just wanted to ask about getting hypertonic solution from the pharmacy?

Would sea water help out too?

Technically, sea water acts as a hypertonic solution, except it isn't sterile since it carries microorganisms within it.
People should take full advantage of the fresh air and the ocean, but only early in the morning or later in the evening. Definitely stay out of the sun. I know people living in St. who were battling cancer and started heading to the beach as soon as it warmed up in April, continuing all through the winter. They claim it boosts their immunity.

A nebulizer is a lifesaver for my kids, especially my little one who deals with asthma. Here is what we use:http://uploads.tapatalk-cdn.com/201...b97f81d1a2.jpg

So, we’re just waiting for things to warm up a little more. This will actually be his first trip to the coast in about 20 years—honestly, I have no idea how he manages to hold out this long.
If it weren't for being by the ocean, he would probably be dealing with some major sinus issues right now.
But this one is all mine.

I know it’s Easter for everyone right now, and I realize you all have your own struggles to deal with, but...
I really need some help here because I feel like I’m about to snap. Poceja is constantly losing his footing—it's just constant turbulence. One minute he’s refusing therapy, the next he’s acting like he’s completely done with everything, or he’s just being driven by some restless energy, or dropping something dark and depressing every single day. When he gets worked up—whether it’s after a session because the nausea from the side effects is getting to him, or even right before the appointment because he's already agitated—everything just becomes a trigger. Everything irritates him.
I honestly don't know how to handle him anymore. No matter which way I turn, I can't get it right. It feels like I can't reach him—like he isn't even truly grasping the reality of the illness. On some days, it’s as if he simply doesn't care at all. It gets to the point where I just want to curl up and walk away.

How should I approach this?

Is there anything you’re taking to help stay calm? Or would you be open to sitting down with a therapist, for instance?
It breaks my heart that we can't just get together and head out somewhere. I know exactly how you feel because I spend the vast majority of my daily life just trying to keep my head above water emotionally. It feels like every time I finally make a little progress, the next day I'm right back at square one. I find myself repeating the same script like a broken record—listing off all the chemo side effects and reminding everyone that feeling this way isn't "crazy," or insisting that the treatment actually makes sense because the scans show improvement... but then the next morning, it all resets. Do you have any capacity to look into some professional mental health support? My friends jumped on the task immediately and found someone who specializes specifically in supporting families of patients, but I just can't seem to find the bandwidth to seek help for myself. There was even a day recently where I completely forgot to eat. It didn't even cross my mind until the next day when my stomach started absolutely killing me. I don't go out for coffee anymore; I don't socialize with anyone. Honestly, having this forum is a godsend, because at least I have people here to talk to.

She transcribed his Xanax prescription, but he just won't take it... Honestly, I wish he would—it’s just that he really didn't want to deal with a psychologist back when he needed to confirm his PTSD for his disability pension, so the idea of seeing one now is completely out of the question for him.

I get this feeling that I'm just talking to a brick wall during those few days when I finally get a hold of him. Normally, he goes out, hangs out with people, and lives life just like he always has—completely normal—but in those specific days leading up to and following an episode, he becomes impossible. I find myself repeating the exact same things over and over again, trying to compare his behavior to other conditions or untreated illnesses, and eventually, I just shut down. I simply step back and let him ride out his own storm.
As for me... well, I've actually been considering asking my doctor about some psychological support for myself. I've been struggling with forgetting even the most basic things lately—literally everything has to be written down on paper or it just slips my mind. I do still go out and socialize, of course; I have to, because I can't stay cooped up in the house all day, but they aren't the kind of people I could ever open up to about something like this. That's why I'm posting here.

I don't have any profound advice or brilliant insights to offer, mainly because my mother's temperament is worlds apart from the men you guys are dealing with. I just wanted to reach out and send a virtual hug to help you all hold steady. 🙂

And regarding @ruggedfox11/">@@ruggedfox11, I was prescribed Xanax (three 0.25mg doses) a while back for other reasons, and it was a nightmare. It felt like I was slipping into an even deeper coma than usual, so perhaps it might actually be for the best if they decide against taking them.

Honestly, our male patients are all cut from the same cloth... there isn't a damn thing in it, whether it's the medication or the doctors trying to calm them down.

Honestly, I think hanging out with friends and just having a good laugh does him more good than any Xanax or doctors ever could. To be perfectly honest, I can’t even begin to imagine being in his shoes... I feel like I’d just crawl into a dark hole and hide.
But then again, those few days would probably just drain my brain dry.