Support resources for families dealing with cancer and other serious illnesses

Steven Smith2 said:So, is it actually possible for new metastases to develop while undergoing chemotherapy—specifically in the liver in this case? And is there even an option for surgery to remove liver metastases? I'd assume they would have to be quite small if they just appeared...

It is indeed possible for them to emerge during chemo.
Theoretically, surgeons can remove them—though, from what I understand, it becomes much more complicated if there are more than five or if they are spread across both lobes of the liver (I am not entirely certain on those specific medical details).
However, given how widespread the disease seems to be here—with involvement in the brain, the adrenal glands, and the liver—I unfortunately doubt that surgically removing the liver lesions would make much sense at this stage.

Steven Smith2 said:Disease stage: T3N0M1b

Metastasis to the liver and adrenal glands
Multiple brain metastases; status post brain radiation
Status following chemotherapy (Stage IV)
Status post cervical carcinoma radiation approximately 20 years ago
Secondary anemia

Liver and adrenal gland metastases
Brain metastases—following brain radiation treatment
Status after receiving chemotherapy
Status following cervical cancer radiation twenty years ago
Anemia resulting from the treatments administered

Is there actually any hope that things will turn around after this next round of chemo? Is there anything left on the table besides more chemo?

Steven Smith2 said:Is there actually any hope that things will get better after this next round of chemo? Is there anything else out there besides chemotherapy we could even try?

Unfortunately, we’re dealing with end-stage disease where the cancer has spread to several vital organs. At this stage, the conversation isn't about chasing a remission anymore—that ship has sailed. It's strictly about maximizing quality of life. The goal now is to manage symptoms and stabilize the patient's condition for as long as possible. While there might be slight improvements in how they feel, modern American medicine is focused on maintaining this current phase and ensuring the highest level of comfort. Since the patient is currently in good enough shape overall, the doctors decided to push forward with a new line of therapy specifically to extend that window of time.
Metastatic disease is just a brutal reality, and honestly, there isn't a "magic bullet" to trigger a remission at this point. However, one viable option is to look into clinical trials, which might offer access to more advanced drugs that aren't widely available yet.

My dad's cancer spread from his lungs to his brain, his bones, and his liver... 😢
The doctor says there isn't much time left.
I just can't wrap my head around it. Only a few days before things took a turn, he was bathing with us and going for walks. Now? He has to hold onto something just to move, he spends more time in bed than on his feet, and he's lost even more weight.

He’s still taking black seed oil every single day. I find myself constantly wondering if there's something else I can buy him—anything to help him regain even a little bit of strength. I'm terrified that once he's completely bedridden, that'll be the end. As long as he can still manage to stand up, it gives me hope that we'll have a little more time together.

Alex Hayes2 said:It’s been a really heavy time lately, and I wanted to share a bit of what we’re going through with my mom. We just received some tough news from her doctors—it turns out the cancer in her lungs hasn't stayed put. It has spread beyond that, moving into her brain, her bones, and her liver as well. It’s a lot to process, and honestly, it feels like the ground shifted under our feet a bit. I’m trying to stay steady and keep things as calm as possible for her, focusing on one day at a time and making sure she's comfortable. If anyone has gone through something similar or has any advice on navigating this kind of stage, I’d truly appreciate hearing your thoughts. Sending strength to anyone else dealing with a difficult diagnosis right now. 😢
My doctor just gave me some pretty heavy news—she’s forecasting that I don't have much time left. It's a lot to process, but I'm trying to stay steady and take things one moment at a time.
I honestly can't quite wrap my head around it. Just a few days before he started feeling under the weather, we were all out swimming together and going for long walks. Now, he’s having to hold onto someone just to stay upright, he spends way more time resting than actually being on his feet, and he's lost even more weight. It's just hard to process how quickly things changed.

He’s still taking black seed oil every single day. Honestly, I find myself constantly wondering if there’s anything else I can pick up for him—something to help him regain even a tiny bit of strength. It’s hard because I’m terrified that once he completely loses his ability to get up, that will be the end of the road. For now, though, as long as he’s still able to push himself up on his feet, he keeps telling me that he’s going to stick around for a while longer. I’m trying to hold onto that hope.

I’m so sorry to hear that. Please, just be there for him and help out in any way you possibly can. Regarding unconventional options available here in the States, I’d suggest looking into medical cannabis oil. Now, I’m not saying it’s a magic cure—I don't believe it will fully heal him—but it might offer some much-needed relief. I’ll add this disclaimer just so I don't come across as some fringe conspiracy theorist or someone pushing illegal stuff! Here is the link to the scientific article you were looking for. I hope you find the data useful!.

It’s been a really heavy week for me. My mom passed away this past Sunday, and it all happened so incredibly fast—it had been less than two months since her pancreatic cancer diagnosis.

wiredotter75 said:Which chemo? For what kind of cancer?? Are we talking FU5 plus oxaliplatin or something else?

It’s small cell carcinoma with metastases in the kidney, one vertebra, and the brain (they handled the brain stuff with Gamma Knife before starting chemo). He’s 69, eating well, and I’m basically shoving immune boosters down his throat constantly.

If you can even believe this, I can't find anything in the paperwork they hand us—it just says PE-protocol. When it's time to hook up the infusion, the doctor just tells the nurse "platinum" when needed, and then tomorrow he's getting 100 mg of Vepesid, even though the nurse mentioned he usually gets a much higher dose than what's in that single capsule... I wasn't with him today, so I don't know for sure....
I actually tried asking the doctor once about his specific meds, and she just brushed me off saying everything is right there in the files (but again, it just says PE-protocol)🙄

So, I was digging around online and stumbled upon this bit of info claiming that Cisplatin is...

swiftpanther102 said:So, I found this thing online saying that Cisplatin is...

aha, so it's basically the same deal as my Oxaliplatin... hang in there, you can handle this!

swiftpanther102 said:Dad is currently undergoing chemo using the PE-protocol (platinum based). He just started his 3rd cycle (the 3-day version), and since tomorrow is a holiday, they’re giving him the oral dose instead...

What kind of side effects should we look out for, and is taking it in pill form actually the same thing????!!! What are we even looking at here?

My dad is also on the PE-protocol—he gets Cisplatin via IV and then takes Vepesid capsules (etoposide). He has to take a total of 12 capsules at 100 mg over 3 days (that's 4 capsules a day—2 in the morning and 2 at night)—so he’s hitting 1200 mg of etoposide in total. My dad has occult microcellular carcinoma.
Basically, he comes into the clinic every three weeks for his chemo session, gets the platinum infusion, and then finishes the rest with those pills at home.

Alex Hayes2 said:My mom's cancer... it didn't just spread from her lungs to her brain—it's moved into her bones and her liver too. 😢
The doctor is giving me pretty much zero time left—it’s looking like things are winding down fast.
I honestly can’t wrap my head around it. Just a few days before things really started taking a turn for the worse, he was right there with us—swimming, going for walks, just being himself. Now? He’s barely upright, clinging to whatever he can for support just to take a step, and he spends most of his time lying down. On top of all that, he’s lost even more weight. It’s just hard to process.

He’s still taking that black seed oil every single day. Honestly, I find myself constantly wondering if there's anything else—anything at all—I can buy him just to help him scrape together a little more strength. I’m terrified that once he finally settles in for good, that’ll be the end of it. As long as he can still manage to get up on his feet, though, he keeps telling me he’s going to stick around for a while longer—as long as possible, really.

Try to be there for him—really lean in and encourage him to move around as much as possible. I don’t know exactly what your doctors have told you, but my dad is dealing with similar stuff—metastases in his bones and liver (it’s small cell, so there isn't a primary tumor to speak of). By the time we actually found out what was going on with him, it had already spread quite a bit. One hospital here told us there wasn't any treatment left and that it was basically the end, but we pushed back, went to a major medical center in New York, and he was able to get chemotherapy there. He also had palliative radiation on his lumbar spine, which honestly put him through the wringer—he was stuck in bed for two straight months because the pain was just that bad. He dropped about 35 pounds, lost all his muscle mass, and it was tough to watch. But then, about three weeks after the radiation finished, the pain finally started to let up enough for him to actually sit up. At first, we had to practically lift him out of bed and hold him steady while he tried to take those first steps. Even though he was still hurting, he pushed himself to walk every single day as much as he could. He was using a 100 mg Fentanyl patch and taking morphine tablets whenever the pain became unbearable. Once he got more mobile, he actually stopped taking the pills—even though he was still in some discomfort—just because he didn't want to become dependent on them. It was a slow process, one day at a time, but through constant movement and exercise, he’s walking completely on his own now. He still keeps a cane nearby just for peace of mind, but within a week, he’ll be walking without it too. We’re slowly tapering down his patch dose, and the best part? He’s actually gaining weight again and eating normally.
The most important thing you can do right now is just be his rock and keep him moving—even if it’s just small stuff. My dad used to do leg and arm exercises right there in bed every single day, doing as much as he physically could. If the bone pain gets to be too much, his doctor will probably prescribe something for it, but just keep in mind that it usually takes about two to three weeks for the radiation to actually kick in and start bringing those pain levels down. Because of that gap, it’s vital that he stays as active as possible and keeps up his conditioning in the meantime. Honestly, you just have to stay positive for him. Despite how much this situation sucks, you’ve got to keep that energy up—it's really the only thing that keeps them going.

Rachel Wood27 said:My dad is also on the PE-protocol. He gets Cisplatin via IV and takes Vepesid capsules (etoposide). He has to take 12 capsules of 100 mg over a 3-day stretch—that’s 4 capsules a day, 2 in the morning and 2 at night—so he's hitting 1200 mg of etoposide total. He's dealing with occult microcellular carcinoma.
Basically, every three weeks he comes into the clinic for chemo, gets his platinum infusion, and then finishes off with those pills at home.

Mine is currently on his third cycle of PE, but since today's a holiday and the clinic is closed, he just took a capsule instead of getting it through the IV. 😢 Usually, it’s every three weeks for three days—the first day is a four-hour session, then the next two days are just one bag an hour. He’s also having this back pain, and honestly, it's gotten so bad now that he's starting to limp... feels like it's dropping down into his hip, I guess, but nobody mentioned radiation or anything. Maybe they're just waiting on the results from his follow-up ultrasound and X-ray in about ten days or so.

Hey everyone,
So, my dad came in for a checkup the other day. He’s been feeling pretty good for a few weeks now—really, he's doing great. He's driving again, going grocery shopping, just living life. The only weird thing is he can't go swimming in the ocean (he says he feels this pressure in his lungs whenever he gets near the coast) and he can't walk for very long without getting winded.
When he showed up for the appointment, all his tests looked fine, meaning nothing was spreading further. He was just about to head home when suddenly, that evening, he started coughing violently. He said it felt like he needed to cough something up but couldn't, like there was this constant tickle in his throat. He just kept coughing and coughing until he started wheezing and gasping; he seriously couldn't catch his breath. It didn't last forever, but it felt like hours. Since then, he's been feeling terrible, and it happened twice in two days.
I get that he's dealing with this disease, but I'd really appreciate it if someone could explain why this happens. Is this kind of thing normal with lung cancer, and is there anything we can actually do? They've repeated all his tests twice now and everything comes back clear. The doctors just say that's just how the disease works.
On top of that, his shoulder has been hurting for weeks, and it's getting worse. They did an imaging scan on the shoulder, but they claim nothing is wrong. He’s scheduled for a contrast scan next week.
Is there any connection between these two things? I'm really worried about those episodes where he loses his breath, especially because once it happens, it's so hard for him to breathe normally again.

swiftpanther102 said:Mine is currently on his third cycle of PE, but since today is a holiday, he just got a capsule instead of the usual IV dose. 😢 Usually, we do this every three weeks for three days—the first day is a four-hour stretch, then two more days with one bottle per hour. He’s dealing with back pain now, too—it's gotten bad enough that he's actually starting to limp. It feels like it's dropping into his hip, but nobody from radiation has mentioned anything yet. Maybe they're waiting on the results from the follow-up ultrasound and X-ray in about ten days.

When my dad was going through his second cycle—which basically counted as his first, really—he had been given low doses of Cisplatin (about 20 mg over five days) because his liver numbers were wonky, so he couldn't handle the standard protocol. It wasn't until the second round that his doctor introduced Etoposide, at which point she told us they'd decide whether to stick with infusions or switch to pills. They ended up going with the tablets. Personally, I assume it's pretty much the same thing; the pills are just way easier because you don't have to trek to the hospital every time—you just take them at home, and everything else is likely identical.
As for that back pain, there's a chance metastases have popped up. My dad has metastases in his spine, and it hurt him so badly he was practically bedridden for two months until the radiation finally kicked in and started working. If something shows up on the scans, you'll see it at the next check-up, and hopefully, they can target that specific area with radiation to dial down the pain. If he isn't already using medicated patches for the discomfort, they might suggest those. I'm really hoping it's not metastases and that the pain is coming from something else entirely.
Keeping my fingers crossed that the results come back good and things start looking up.

Nancy Lee said:Hey everyone,
So my dad came in for a checkup the other day. He’s been feeling pretty good for a few weeks now—really great, actually. He’s been driving himself around, grabbing groceries, just getting back to his normal routine. The only thing is, he hasn't been able to go swimming in the ocean (he says he feels this weird pressure in his lungs whenever he gets near the coast) and he can't walk for very long without getting winded.
When he was at the clinic, all his tests came back fine—meaning nothing seems to be spreading further. He was just about to head home one evening when, out of nowhere, he started coughing violently. He said it felt like there was something stuck in his throat he needed to cough up, but he just couldn't. It was like this constant tickle he couldn't shake. He kept coughing and coughing, and then suddenly he started wheezing and gasping—he just couldn't catch his breath at all. It didn't last forever, but it felt like hours. After that, he started feeling terrible, and it happened twice more over the next two days.
I get that he's dealing with this disease, but I'd really appreciate it if someone could explain why this happens. Is this kind of thing normal with lung cancer, and is there anything we can actually do? They've repeated all his tests twice now and everything looks okay. The doctors just say, "Well, that's just the nature of the illness."
On top of that, his shoulder has been hurting for weeks, and it's getting progressively worse. They did some imaging on the shoulder and told us there's nothing wrong there. He's scheduled for a contrast scan next week.
Is there any connection between these two things bothering him? That sudden loss of air is really scaring me, especially because once it happens, it's so hard for him to breathe normally again.

The coughing is likely due to the disease itself—I don't know how much of his lungs are involved, but that's the most probable cause. You also see similar symptoms with SVC syndrome (superior vena cava syndrome), where you get things like facial or neck swelling, difficulty breathing, coughing, visible veins in the neck/chest, or arm swelling—but you'd probably see evidence of a mass pressing on the vein on an X-ray. So, honestly, I think it's directly from the cancer, especially if the tumor is positioned in a way that interferes with the bronchi.
Look, I'm no doctor, this is just my take on what might be going on.

As for the shoulder, it could be related to metastasis, but since they already ran tests and ruled that out (which is good news, by the way), it’s possible—like a young doctor once explained to me—that the pain is still caused by the tumor. Some tumors secrete specific hormones that can trigger bone pain and stuff like that.
For now, just keep a close eye on him regarding that coughing, and maybe ask the doctors if there's any medication that could help ease those episodes. I really don't know.
I'm hoping things settle down and he starts feeling better.

Sorry if this thread already exists, but I could really use some insight here. My dad just finished his first round of chemo for Stage 3 colon cancer. To try and boost his immune system and get him ready for the second cycle, we decided to start him on beta 1,3 D glucan Transfer Point. From everything I’ve read online, nobody seems to mention side effects—just how much it helps their immunity. But since my dad started taking the beta 1,3 D glucan Transfer Point, his nausea, stomach cramps, and intestinal issues have spiked, plus he’s got this constant metallic taste in his mouth. He can’t eat anything and looks like he’s wasting away right before our eyes. He’s only been on it for a week. Is it actually possible to have such a violent reaction? Should we push through or just stop immediately? If anyone has used this stuff and dealt with nasty side effects, please let me know... thanks.

My dad was on those too, but he never dealt with side effects like this. Everyone reacts differently, though. Honestly, maybe you should stop giving them to him altogether. I don't want to freak you out, but this could be a direct result of the treatment or just the illness itself. It might not even have anything to do with the pills. What they told me was to start my dad on just one pill a day, and then slowly bump him up to two after about ten days.

Good day to you all. Could someone please share their experience to help me navigate a few concerns? My husband is currently fighting colon cancer. He just wrapped up his sixth and final round of chemotherapy. Initially, our doctors told us that once those six cycles were complete, we would have answers within a month—they planned to run ultrasounds, CT scans, and check his tumor markers. However, the story has suddenly changed. Now they are saying we have to wait another three or four months before even running the tests. Is it truly necessary to wait that long to see if the chemo actually worked, or can we find out sooner? While we are praying for the best, we can't help but wonder if waiting this long makes sense if things haven't gone as planned...
I am seeking your advice and thank you so much for any help.

Nancy Lee said:Hi everyone,
My dad came in for a checkup the other day. He’s been feeling pretty good for a few weeks now—really great, actually. He’s been driving around, picking up groceries, just getting back to life. The only issue is he can't go swimming in the ocean (he says he feels this pressure in his lungs when he gets near the coast) and he can't walk for very long without getting winded.
When he showed up for the appointment, all his tests came back fine; nothing was spreading further. He was just about to head home when suddenly, that evening, he started coughing violently. He said it felt like there was something stuck in his throat he needed to cough up, but he couldn't. It was like a constant tickle. He just kept coughing and coughing until he started wheezing and gasping—he literally couldn't catch his breath. It didn't last forever, but it felt like hours. Since then, he’s felt terrible, and it happened twice over the last two days.
I get that he's dealing with this disease, but I’d really appreciate it if someone could explain why this happens. Is this kind of thing normal with lung cancer, and is there anything we can actually do? They repeated all the scans twice, and everything looks okay. The doctors just say that this is simply how the disease works.
On top of that, his shoulder has been hurting for weeks, and it's getting worse. They did imaging on the shoulder, but they claim nothing is wrong. He’s scheduled for a contrast scan next week.
Is there any connection between these two issues? This sudden loss of air is really scaring me, especially because once it hits, it's so hard for him to breathe normally again.

Unfortunately, yeah, that’s just the nature of this illness. It won't be the cancer itself that kills my father, but specifically that cough... it wears you down so much, it's heartbreaking. If his coughing fits get worse, ask the doctors for codeine. It's the only thing that helps; it acts on the centers in the brain to block the urge to cough. My father didn't start taking it until the third day, and he finally slept through the night after 20 straight days of struggle. He still has bouts of coughing that last for hours, but with the codeine, he at least gets periods of peace. It’s all just awful, and honestly, modern medicine doesn't seem to have many tools to ease this kind of suffering. I read somewhere that an enzyme found in dark chocolate—70% cocoa or higher—has an effect on coughing that's even stronger than codeine, so I've been giving him that too, and it actually seems to help.

Dance sky, my dad’s been sipping on Codeine for months now and honestly, nothing is working. The doctors seem pretty baffled; they kept telling me they’ve never actually had a patient who didn't respond to it, but I guess my dad is just that special case.
I’m thinking about taking him to see a holistic practitioner, because if this cough doesn't settle down soon, he’s probably going to lose his mind.

Hi everyone!

Could someone help me make sense of this? It says there's nothing enlarged in the retroperitoneum of the lumbar regions near the abdominal aorta and inferior vena cava, but there are some small, clustered lymph nodes measuring between 7mm and 9mm.
There's also a minimal amount of fluid noted in my pelvis.

To give some context: I had testicular cancer and underwent a lymphadenectomy followed by two rounds of preventative chemo. My scans have been clear for four years now, and I've been doing routine checkups every ten months. However, after this most recent scan, they told me to come back in three months for follow-up testing without really explaining why.

If anyone has any insight on what this might mean, I’d really appreciate it. Thanks in advance!