Posts by cosmicmason15

Angela Wright said:Dad needed radiation for those spinal metastases. I honestly don't understand why they didn't order it sooner. That's essentially how you deal with them.
The Dexamethasone helped because he was dealing with brain edema caused by the metastasis pressing against his brain; he was having episodes, which subsided once the steroid therapy kicked in. As for his leg, it’s likely due to the spine, though it could be surgical damage.
I don't know what else to say, except it feels like a case of too many overworked administrators who can't perform their jobs properly and don't communicate well with each other, leaving my father's condition in this shambles.
Find the link; I'm afraid you won't have time to deal with other pressures. Ideally, you should move him somewhere out of town for treatment, so if all else fails, at least he has quality palliative care.
And check with St. Nedelj about getting that spinal area radiated.

Sent from my Samsung J510FN using Reddit

It's been nearly three weeks since Dad came home... it took some time to adjust. At first, you think you'll just snap, but then you settle in, though "intense" is an understatement.
Nothing from St. Nedelj; they haven't been able to help.

He gets tremors in his legs sometimes—uncontrolled, of course, and he doesn't feel them—but I see them twitching. And when we're doing hygiene, he says he can feel touch in the anal area.
I know the spinal cord is incredibly sensitive and the metastasis caused damage, but I'm still clinging to the hope that I might dig up some treatment that could repair that damage.

His second round of chemo is next week, and the radiation for the spine and head is in about ten days... a private physical therapist has started coming by too. It's a constant struggle.

Since he spends most of his time lying on his back, he can't really cough; when he tries, it sounds terrible, so I turn him onto his side every time... is it normal in these circumstances to be unable to cough?

His blood sugar is all over the place because of the Dexamethasone, so he started taking the pills he used before, which makes it more manageable now—it stays under 15. We've lowered the Dex slightly... otherwise, has anyone here ever adjusted their dose of Dex on their own? How do you even know how much to increase or decrease?

Regards to everyone, hang in there.

Greetings, everyone.

@ruggedfox11/">@@ruggedfox11 — my sincere condolences. I’ve sat here and gone through every single one of your posts from February 14th until now, and I can say with absolute certainty that you truly gave it everything you had.

First off, I have to say that the mere existence of this group is something truly worthy of immense praise. I find myself deeply admiring everyone who takes part in these discussions.

Here is my story:

August 23rd. My father was admitted to the hospital because his left arm just... quit on him. Total loss of function. They ran a chest X-ray first, which showed some shadow, and then they had him in a head CT that very same night. It picked up a 31mm lesion. Shock. Absolute shock.

The same day, he was transferred over to Jordan, where they put him on Dexamethasone.
By the very next day, his hand started showing signs of improvement, only for things to settle back to nearly normal within just a few days.

The bronchoscopy was performed on August 30th. It confirmed the diagnosis: adenocarcinoma of the lung.
Since he’s diabetic, his blood sugar has been absolutely spiraling out of control lately—all because of the Dexamethasone. It’s one of those unfortunate side effects that just hits you out of nowhere. Because of that, they've had to switch him over to insulin; he was managing just fine on tablets before this, but now things have shifted.
In my daily chats with my dad, he keeps telling me how he’s doing "absolutely fantastic." He claims he’s eating like a king now, and apparently, he’s feeling strong enough to take a stroll over to the local shopping center without breaking a sweat.
I find myself stationed way up in the far northern reaches of the country right now. Despite all the suggestions that there’s absolutely no reason for me to make the trip, I’m dropping everything, cutting my work short, and heading straight into the city.

September 5th. Just before my appointment, I had a digital chest X-ray done. It showed absolutely nothing has changed compared to the one from two weeks ago. Same old story.

September 6th. The first round of chemo begins.

I’m making my first visit today, and honestly, it’s another brutal shock to the system. He’s lost a significant amount of weight, and his mobility is visibly compromised—it’s painfully obvious that he’s having to "drag" his left leg along. When I brought it up, he mentioned that the leg started acting up just a few days ago. He also told me that he stepped on the scale last night and he’s already down 12 pounds since he was admitted to the hospital. That's a massive drop for just a two-week stay.

I was sitting there having a conversation with my doctor, and honestly, she didn't even get past my very first question about his condition before she started rolling her eyes at me. It’s just one of those things, isn't it? You go in expecting a professional dialogue, and instead, you get that blatant, condescending dismissal. I suppose I shouldn't be surprised anymore—it feels like you can't catch a break lately.
I mentioned how much weight he’s dropped and asked what the plan was to address it. He claims he's being prescribed Supportan—which I naturally double-checked, because of course that wasn't true—so the next day I went out and picked up some Supportan myself to bring to him. He hasn't actually started taking it yet, though; the chemo has just been absolutely kicking his teeth in for the last few days.
I asked her about the size of the lung tumor, and she just told me she couldn't find that information in the system right now... which, of course, makes perfect sense, considering they only ran an X-ray.
They keep telling me, over and over again, that I need to wait on those brain MRI results. Apparently, getting that sorted is the absolute top priority right now. It’s all they talk about.

September 11th. Regarding the MRI results. There is a metastasis in the head, specifically on the right side—an expansive intraparenchymal lesion in the upper frontal gyrus measuring 40x28x36 mm. There is also a 4mm inhibitory lesion in the parietal lobe that seems to correspond to a second focal lesion. I spoke with the neurosurgeon today, and he informed me that we are actually only dealing with one single lesion, which is operable. It’s all quite heavy. Just sitting here trying to process how one small spot can change everything.
The transfer to the rib is on the schedule, though things are dragging out a bit. It looks like we’re facing some delays due to some kidney function issues. Just one more hurdle, I suppose.

September 13th. I’ve lost another five pounds. That puts me at seventeen pounds down in just three weeks. Honestly, if this keeps up, I’m going to lose my mind—I'll be marching straight into the doctor's office tomorrow morning to demand a real sit-down. They actually started him on Glucern (that specialized formula for diabetics) first thing this morning, though. While I'm there, I figured I’d pepper him with a few more questions. Specifically, I need to know when they're finally getting that CT or PET/CT scan scheduled for the abdomen and chest.
Then she starts getting all worked up about why he even needs the PET/CT scan. She's arguing that since they already know exactly where the primary tumor is located and he’s already being treated for it, the scan is redundant. Her logic is that we should just be waiting for his kidney function to stabilize so he can be transferred immediately to the Mayo Clinic to deal with the metastasis in his head.
In the meantime, things are steadily sliding downhill. His balance is completely shot—he’s leaning heavily toward his left leg now—and his speech has started to slur. It's just one thing after another.

So, it turns out the CT scan for my chest and abdomen is still happening on September 18th. It’s the same day I have that follow-up appointment with the doctor. She mentioned there’s something showing up on one of my vertebrae, but she was quick to point out it isn't causing any pain. Apparently, it's in the very early stages—just a starting point, really—and she expects it to resolve itself on its own later on. Just one of those things, I suppose.

September 19th. I’ve been transferred over to the Mayo Clinic. I just received my discharge papers, and looking at the CT scan results... well, it isn't exactly comforting. It describes a solid mass infiltrating all three lobes of the right lung, measuring roughly 92x86x69mm. There’s also a lymph node in the right hilar region, about 13mm in diameter, which seems to be continuous with that mass. Then there’s a lytic lesion at the T9 vertebra—which could very well be a bone metastasis. To top it all off, they noted a focal thickening of about 19mm where the left adrenal gland branches meet, though the etiology remains unknown, and a small pericardial effusion reaching a maximum depth of 9mm. Just one thing after another.

Sept 22nd – surgery day. They removed the metastasis from his head, and thankfully, everything went smoothly. Such an immense sense of relief.
I had a long talk with the neurosurgeon about that second lesion. He suggested the radiologist might have misread it initially. We went back to review the scans together, and he confirmed there’s nothing left—everything looks clear now.

Sept 25th – He was up and walking a bit, but by the next day, it got harder. He started feeling numbness in his right leg... When they tried to remove his catheter, he couldn't urinate, so they had to put it back in. He underwent an MRI of his thoracic spine—turns out most of the vertebrae and the spinal cord are affected, and it isn't operable. The prognosis is grim: everything below Th9 is going to fail, including sphincter control and bowel function. It's a total nightmare.

By Sept 30th, both legs had already failed him.

He’s coming home today. We're busy prepping everything—getting the hospital bed ready, the pressure ulcer mattress, all of it.
Honestly, my dad is an absolute rock. His positivity and defiance are unlike anything I've ever seen.

I can't help but wonder... could this paralysis have been prevented if they had done radiation while he was still at the Jordan facility between Sept 11th and Sept 19th, before he was moved over to the Rib? Or was the leg issue caused by the brain metastasis or the spinal one? After the Dexamethasone, his left arm regained function immediately, but then the left leg started failing shortly after.

Has anyone else here gone through something similar? Is there any hope for regaining mobility through further radiation or perhaps radiosurgery, maybe at a specialized center like Radichirurgia in St. Nedelj?

If you have any advice regarding home care, please, anything is welcome.

Apologies for the long post, but I just needed to get this all out.