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

Just wrapped up the ENT appointment and the first oncology consult...
The hospital is absolutely packed, but seeing those hallways full of people outside the oncology clinics just hit me hard...😢

Dad’s been referred to the Mayo Clinic in Seattle for radiation, starting with an initial evaluation to see if he's even a candidate... Depending on what they decide, we'll figure out the next steps...

shadowbison75
So, it’s just playing out the way it's going to. How did your dad take the news?
Yeah, hospitals are packed with oncology patients, and you see all kinds of things in those hallways. It's depressing.

We had a terrible day today. They wouldn't discharge Dad because of some absolute nonsense, and I honestly don't have the energy or the will to even type this out. When you demand answers, all they say is, "you know what his diagnosis is," so we push back, then they apologize, then suddenly it's our fault—you don't know whether to cry or scream.
Someone posted on this Reddit long ago saying, "it would be more humane if there were someone standing by with a mitral valve in the hospital." That is such a tragic truth. I'm exhausted.

Does anyone have experience with Steven (regorafenib)? Thanks.

ruggedgardener74 said:Does anyone have experience using Steven (regorafenib)? Thanks!

This is a targeted therapy that’s been approved here in the States for treating colorectal cancer, hepatocellular liver cancer, and GIST during later stages of treatment. Essentially, the goal of the therapy is to keep the disease under control for as long as possible.

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Anova Clinic

How are we doing? This thread went dead..

Checking in every single day just to see if anyone is actually active on this thread...
It feels a little safer here. Gives me a sliver of hope... maybe enough to keep going through all this...

We're just waiting on the radiation appointment... praying every morning they'll finally call us. Though we aren't even sure if the radiation will help or just make things worse... 😢

Dad has gotten so weak... he's getting 5 or 6 meals a day through the gastrostomy, but he's still fading...

ruggedgardener74 said:How's everyone doing? This thread went quiet...

What's the situation on your end?

Dad's doing worse. Cognitively and personality-wise, he’s a completely different person. The MRI didn't show significant progression, but we can see the decline. Chemo was stopped because it was basically destroying his entire system; we're waiting on the oncologist next week, and I don't have high hopes.

Where is the radiation therapy taking place? Which city?

ruggedgardener74 said:Dad’s doing quite a bit worse. Cognitively and personality-wise, he's basically a different person. The MRI didn't show massive progression, but we can see it... Chemotherapy was stopped because it was nearly destroying his whole system. Waiting on the oncologist next week. Not looking good...

Where's the radiation happening? Which city?

The radiation will be at the Mayo Clinic in Seattle.

Is he in pain? Is he still mobile?
😢

Our dad was holding up pretty well mentally at first, but as time goes on and he deals with the illness, he just keeps "slipping"... It's hard watching him like this, knowing there's nothing I can do to help.

He isn't experiencing any real pain and stays mobile. His mood is fine; he’s just disoriented and struggling with memory loss.
His hands shake, and he's swollen from the corticosteroids, but physically, he's holding up okay.

I honestly don't know if this disease is a curse or a blessing. Personally, it's incredibly hard watching my dad lose his former self, but at least he isn't in pain—he can eat, sleep, and walk. I'm not sure if that's better or worse than being fully aware of everything while suffering through constant pain and a completely diminished quality of life.

Dad sees everything, but he’s completely helpless...

He hasn't touched food or drink in three months... we have to rely entirely on his stoma. A man who lived for good meals, for Mom's cooking, for all those little things... now he can't even take a sip of water. 😢
And on top of that, he can't say a word... it’s killing him even more. He wants to tell us something, but he just can't.

It's incredibly hard to wrap my head around this... so hard...

We don't show any weakness in front of him: we laugh, we talk to him like he's still the old man, recounting our day... but inside, I'm falling apart.

How do you guys handle communication? Honestly, I used to just scribble everything down on scraps of paper. Sometimes I’d even sit down and write out these long, rambling notes, but never during an actual conversation—it was always more of a post-event kind of thing. So yeah, I totally get why you're feeling so frustrated.

Eric Newman75 said:How do you guys communicate? I used to write things on scraps of paper. Sometimes I'd write out a longer note, but never during the actual conversation—more like after the fact. So I get the frustration...

There’s this one block where he's just chemically exhausted, so he writes down what he wants to say—but still in these short bursts. We have to fill in the blanks ourselves to figure out his point.

It’s frustrating when he can't find the words right then...
Just thinking about how hard that must be for him...

I’m keeping my fingers crossed that you get called in for radiation ASAP and that everything goes smoothly.

Anyone need some Megostat syrup to help kickstart an appetite?
Opened it last month, but I haven't even touched it once.

shadowbison75 said:Dad is fully aware of everything, yet he’s completely helpless...

He hasn't put any food or drink in his mouth for three months now; we have to feed him entirely through a feeding tube. It’s just... he was a man who truly enjoyed food, my mom’s home cooking, all those little things... and now, he can't even take a sip of water. 😢
And on top of that, he can't speak at all... I think that’s what’s killing him even more. If there’s something he wants to tell us, he just can't.

It is incredibly hard for me to come to terms with this, really, deeply hard...

We don't show any weakness in front of him: we laugh, we talk to him like he's still his old self, recounting how our day went, but inside, we are just breaking apart.

I am so sorry you are going through this. It is just so difficult. It has been eight months since my dad passed away. He couldn't swallow liquids either. There wasn't a specific reason, other than maybe just old age. He didn't have cancer or a stroke, but he was 88. My mom was 68 and in a much tougher state, dealing with sepsis in the hospital, but while she was conscious, she could normally swallow water and tea. Dad was also fully aware. He watched me the whole time. He fought until the very end. It was just that the nasogastric tube just didn't work for him. It felt too short, and it kept shifting every hour. In my opinion, those are only meant for hospital use. But they sent him to the nursing home with that kind of tube and even said the staff there had to manage it. Honestly, rarely did any nurse at the facility have experience with that. I didn't dare try to do it myself because, well, I was just so afraid of everything.

My dad was prescribed Etoposide as a last-line treatment for glioblastoma. Does anyone here have experience with this? I’m looking for information on success rates, but there isn't much available online. Thanks.

After my family member finished chemo, we're sitting on a huge pile of CCNU (Lomustin) capsules left over...
Does anyone know if there are places in the US that buy back leftover meds so I can get at least some cash back?

I'm sure some of you here have dealt with cachexia when a loved one is fighting cancer...

My dad is fading fast... currently undergoing radiation...

Any advice on what to ask the doctors? Is there anything actually helpful for cachexia?

So, there are these Fresubin nutritional drinks you can get with a prescription. At least, they used to be easier to get if it was listed on the discharge papers, and then you’d just order them through the pharmacy. You can also pick up Prosure in those little tetra packs quite easily—most pharmacies carry them. I stopped giving it to my mom because it was causing her diarrhea, but she had already recovered by then, so it wasn't strictly necessary anymore. If you are looking for a specific type of Fresubin, I guess you should really check with the doctor first, since there are so many different kinds. They aren't just different flavors; the actual ingredients vary too, so the doctor can have the pharmacy order a full supply tailored to what's needed. As for that over-the-counter Prosure, it isn't too expensive. It comes in chocolate or vanilla, and maybe you could just buy a few individual packs first to see which flavor he actually likes.