Donna Ruiz67 said:Not yet, but definitely good info to have.
The metastases in his chest are starting to cause trouble. High heart rate, shortness of breath, he’s losing his voice—and his shoulders are aching just like at the very beginning when they insisted there was nothing in his chest. Since he's a heart patient too, the ER gave him a beta-blocker and added Normabel on top of it per their advice. The heart rate did go down, but he's still struggling with shortness of breath, and now even his cough is acting up. I finally talked him into taking some Glucerna. He was put on oxygen, but honestly, it didn't do much for the breathlessness. By the way, his oxygen saturation is at 96% every single day. If only it were that simple. Lung cancer.
The ups and downs he's been hitting over the last month and a half have been absolutely jarring.
I haven't posted in a really long time, but we went through something very similar with my dad.
September 19th will mark one year since he passed away from small cell carcinoma of unknown primary origin after a two-and-a-half-year battle.
From the start, his liver was riddled with metastases, and he had them on almost every bone in his body. He went through 13 rounds of chemo following the PE protocol, and we actually managed to get the disease under control.
Six months after his last chemo session, we discovered brain metastases quite by accident during a routine checkup—he hadn't shown any symptoms at all. There were six spots: two on the cerebellum (the largest was 3 cm) and four smaller ones on the cerebrum.
He completed five sessions of cranial radiation. He took them like he was going on a little field trip rather than undergoing brain radiation; everything went smoothly, zero symptoms.
It wasn't until about two months after the radiation finished that we ended up in the ER—nausea, vomiting, a mild headache, and loss of balance. They ran an emergency CT scan and started him on steroids (first Dex, then Medrol at 40 mg daily, oral tablets). The symptoms were being caused by edema forming around the metastases following the radiation.
After that, things seemed okay, and he was symptom-free while on the steroids. Following the oncologist's instructions, we tapered the Medrol dose down slowly because she told us it would take some time for the radiation to "do its thing"—for the metastases to shrink, and with them, the surrounding edema to recede. However, a follow-up brain MRI showed necrosis in all the brain metastases, though that largest one on the cerebellum had actually grown to 4 cm (even though the center of it was completely necrotic).
The symptoms crawled back—nausea, vomiting, loss of balance—so we bumped the Medrol dose back up, following the oncologist's guidance to take 20 mg twice a day, morning and night.
That kept things under control for a little while longer.
About a month before he passed, his heart started racing constantly and his blood pressure was all over the place, swinging from high to dangerously low. My dad was a heart patient as well—he'd had a heart attack five years before the cancer diagnosis—but after that, his BP was always steady as long as he stayed on his meds.
Aside from the slight nausea and the loss of balance, thankfully he didn't have many other symptoms. When we sat down with my dad's oncologist to discuss options and what could be done if things took a turn for the worse, she mentioned it was too early for more radiation (even though he hadn't reached the maximum allowable dose yet), but noted that if the symptoms became unbearable, they could try smaller doses than the first round, or perhaps surgically implant a shunt in his brain to drain the fluid and ease the symptoms (thankfully, we didn't go that route; I think it would have been brutal for him).
But hey, that's just one set of possibilities, in case nobody has mentioned it to you. We were lucky with our doctor; she truly did everything in her power for my dad, who was honestly a phenomenon from the start of the illness all the way through his treatment.
Two weeks before he died, his heart rate was constantly elevated despite the Normabel and his other heart medications, and for a short period, he was also on Lasix (his ankles would swell occasionally, though not excessively, which is why he was on the Lasix). That helped stabilize his blood pressure sometimes, but other times, it didn't help at all.
Things were actually looking up for a little while there—about two weeks before he passed, we attended a wedding, and he managed to stay awake and hang in there for the entire night. It felt like a small win. Then, just a few days later, they put him back on chemotherapy—which was the first time he’d had it in a year—because something suspicious popped up on his liver scan. The doctor wasn't entirely sure if it was a new metastasis or something else, since it was this new growth that hadn't been there before, specifically because it looked hypovascular (basically inactive), but she decided to play it safe and prescribed two more rounds of chemo just in case.
By the time he finally ended up at the hospital, things were already looking pretty grim—he was running a fever of 100.4, and his blood work was absolutely disastrous (white cell count was basically zero and CRP was sitting at 350). His blood pressure had dropped so incredibly low that neither our home nurses, the visiting caregivers, nor even the staff at the hospital could actually get a reading on it. To top it all off, his heart rate was absolutely racing.
He passed away in the hospital tonight. They told us he was already in septic shock by the time he was admitted—which honestly makes zero sense because Dad didn't show any signs of sepsis before that. He just woke up with a fever that morning, so Mom gave him some Advil, the temperature dropped, and it stayed down after that. It all happened so fast.
That day, besides those intense heart palpitations, he was breathing fast and feeling short of breath—plus he was a little out of it (he actually congratulated me on my birthday, which wasn't even for another month). His oxygen saturation levels, though, were totally normal.
The only thing was that his kidneys failed him—he didn't even pee at all that day, so his electrolytes were completely out of whack.
We still don't know the exact cause of death—since an autopsy was never performed. The hospital staff initially told us it was septic shock, but my dad’s oncologist later stepped in and said she was certain it wasn't sepsis. Based on how her breathing and heart rate were acting, she felt it was more like some kind of systemic shock.
I went a little overboard with the length of this post—my bad. I just wanted to give a quick, condensed rundown of everything that’s gone down for anyone who might have missed the earlier threads.
You should definitely ask about the possibility of re-irradiation and whether they’re looking into installing a shunt in the head. In my dad's case—it had been seven months from the time he finished radiation on his head until he passed—the doctor was actually still weighing the option of doing more radiation if his symptoms took a serious turn for the worse. Even then, she mentioned she would have used a much lower dose than the initial round. She just kept it on the table as a potential option.
She was holding onto this hope—just like the rest of us—that chemo would actually do something about those brain metastases, even with that stubborn blood-brain barrier in the way. The logic was that certain studies have shown chemo can actually have an impact on brain mets when dealing with microcellular carcinoma. I even did my own digging and dug up a few scientific papers myself, and when I ran it by her doctor, she actually confirmed it.
Unfortunately, we didn't even get to see if that last round of chemo actually worked—my dad passed away just a week after it started.
You really need to dig deep into whatever options are left on the table—don't just take things at face value. Sit down with the doctor, ask the hard questions, and fight to get everything available. There’s absolutely no point in letting him suffer if there’s even a chance to ease the symptoms. It's worth the battle.
I honestly have no clue what exactly is going on with your dad’s treatment plan right now—specifically whether he’s even being considered for any more chemo—but it might be worth asking the doctors about that. Sometimes, you can request a lower dose just to see how his body reacts before committing to the full amount... just an idea.
I don't know about you, but hearing your story about those brain metastasis symptoms—it really hit home. It reminded me so much of the symptoms my dad went through.
Hang in there—I truly hope your dad’s pain stays minimal. It’s hard to say this because I lost my own father, and honestly, not a single day goes by where I don't think about him or find myself replaying that final day over and over in my head—but as much as it hurts, I am so incredibly grateful that he didn't reach that stage where the illness just takes over and leaves you in total agony.