Posts by Rachel Wood27

Olivia Gray54 said:I never thought I’d reach the point where I actually felt the need to post something on this thread, but life just has a way of being completely merciless and not giving you any warning... Anyway, we found out today that my mom has pancreatic cancer. 😢

It all started with some pain in her spine—specifically just below the right shoulder blade—this dull, nagging ache that wouldn't quit. She just kept complaining about back pain and trouble breathing, then she lost her appetite and started wasting away. My brother and I both thought it was weird, especially since the doctors basically brushed her off, telling her, "You're fine, ma'am, it's just psychosomatic; go get some spinal therapy, and here’s a cocktail of meds for your nerves..." Honestly, just total garbage doctors say when they have no clue what's actually going on. So, she took those pills for a week or two, went to her massage appointments, but that appetite just wouldn't come back. That’s when the alarm bells went off for us. We started Googling her symptoms, and for him, it came up as liver cancer, but for me, it was pancreatic. Since everything is centered in the abdomen anyway, we rushed her to a private clinic for an abdominal ultrasound and—of course—they found something near the pancreas. That was last Friday; everything has been moving at light speed since then: getting her hospitalized (we had to pull some strings because our local hospitals won't admit you unless you're practically on your deathbed), the CT scan, and then this devastating news... She’s heading into surgery this Thursday; they’re going to try to remove the entire tumor since it hasn't metastasized to other organs yet, but the prognosis isn't great... What hurts the most is that she had a routine checkup back in March and everything was perfectly normal—the report said the pancreas looked healthy and...

And now I’m sitting here wondering: how am I supposed to cope with the fact that my other parent has cancer, and the absolute worst, deadliest kind? The kind where the chances of survival feel non-existent? My dad passed away five years ago from lung cancer; he was gone within three weeks of being hospitalized. He smoked his whole life, so we understood why it happened, but Mom wasn't in any risk group for pancreatic cancer. She’s never been sick, never even stepped foot in a hospital in her sixty years. No smoking, hasn't touched coffee in 15 years, no alcohol, no diabetes, no obesity, no family history of cancer... NOTHING. So how am I, at 25, supposed to find the strength to fight, to keep fighting? I'm not usually the emotional type—I've always been steady as a rock—but this is just too much...😢

Richard, pancreatic cancer is brutal, but it isn't untreatable, especially if caught early, and it sounds like that might be the case for your mom. The fact that she’s already scheduled for surgery is a good sign, and if you say it went okay, it likely means they were able to get it all out, which is also a positive. Now you just have to wait for the pathology results, see if the lymph nodes are clear, and then start the fight.
Don't let the dark thoughts take over. It won't be easy, but nothing is lost yet, and your mom could still live many more years without signs of illness, especially given the kind of character you described.
The fact that you and your brother reacted the way you did prevented this from being discovered when it was too late to act, so you actually have plenty of reasons to stay optimistic. I'm keeping my fingers crossed for you guys that everything turns out alright. 🙂

My dad is also fighting cancer—occult microcellular (you can't even see it on the lungs)—with metastases in the liver and bones. Over this past year, he's gone through 12 cycles of chemo, and he had a follow-up CT on Tuesday; the results showed a significant regression in the size and number of liver metastases, his lungs are clear, and his bones are stable.

To be honest, Dad actually gained about 45 pounds over this past year—which is a huge shift considering he dropped almost 70 pounds right when the illness first hit. He’s actually feeling pretty good now; you wouldn't even know he was sick if it weren't for him being a little more wiped out than usual, but honestly, given the whole situation and the anemia, that's not surprising at all.

Neither of us ever threw in the towel, and neither did Dad—even after they gave him just a month to live because things were looking so grim initially.
That’s why I’m telling you, don't let the negativity get to you. Sadly, the reality is what it is—you can't change the circumstances, so you just have to grit your teeth and fight with everything you've got. I'm really rooting for you to have many more wonderful years ahead with your mom.🙂

Anja and Gary Thomas13, I am so incredibly sorry for your loss 😢

cosmiclynx14 said:But what does it actually mean when they say liver metastases are receding? Are they trying to wipe them out completely with chemo, or is surgery an option if they shrink enough?

The doctor is coordinating everything with the chemotherapy—if all those liver metastases pull back, then she’ll take him off the chemo. I haven't pressed her on other options yet (like radiofrequency ablation), but I definitely plan on bringing that up.

Right now, I'm just hoping these next three rounds of chemo finish the job and kill off those metastases for good. If anything is left over after that, I'll ask about the ablation.

With my dad, his liver was absolutely riddled—there wasn't a single spot that wasn't hit. The largest lesion was 5.5 cm right when we first found out about the tumor, and things actually got worse before we even started treatment.
Now, there are two larger lesions—the biggest one being 3.5 cm—plus a few smaller ones.

Compared to the previous scans, the metastases have shrunk significantly, and the doctor pointed that out herself.

So, I'm just holding onto hope and praying those liver metastases disappear entirely—though, honestly, I'm terrified of the idea of stopping chemo, because I know how brutal that cellular level stuff can be.

Anyway, all we can do is keep fighting and try to stay optimistic and positive. 🙂

We headed in for our checkup today, and honestly, the doctor was pretty pleased with how those liver metastases have receded—though, to be fair, she wasn't exactly expecting much movement regarding the bone issues.

Chemo kicks back up in a week; we’ve got three more cycles of the PE regimen left before the next round of scans.

So, hang in there, my fellow fighters—I'm pulling for every single one of you!

feralsurfer72 said:What needs to happen to get a final diagnosis? Is a biopsy necessary, or is a needle aspiration enough to settle it?
How long does it usually take to get the results back?
And what if the results come back positive? What are the treatment options then? What can be done about liver metastases? (Palliative surgery, radiation, chemo, radiotherapy? Risks and side effects? Targeted therapy?)
What if the results are negative? What’s the next step? How will they figure out where the primary tumor actually is?

Look, feralsurfer72—you definitely need that needle aspiration to pin down the exact type of tumor (whether we're talking adenocarcinoma, small cell, etc.) because that dictates everything regarding treatment. In our case, we had the results by the second day since my dad was already admitted to the oncology ward at the hospital—so being under hospital care probably sped things up. But based on what others have mentioned, you're usually looking at about 10 days for the pathology report to clear.

As for whether the result will be "positive" or not... honestly, it's pretty much already established that there's a tumor here. The test is just going to identify the specific type. If it turns out to be adenocarcinoma, they'll likely look at the pancreas as the primary source; if it's small cell, it's likely lung-based—it could even be melanoma. Either way, the pathology report tells them what they're dealing with, and the doctors will propose a plan based on that (which would include most of the stuff you listed, though I doubt they'd use radiation unless it's for painful bone metastases or certain lung lesions, since you don't really radiate the liver).
Depending on what that pathology report says, the doctors will finally have a clear idea of where the primary tumor is hiding.

I'm sincerely hoping things start moving forward soon, because, unfortunately, there isn't any time to waste. And please, don't feel bad about grilling the oncologist tomorrow with every single question on your mind!

cosmiclynx14 said:Rachel Wood27, did you get the CT results back yet?

Yeah, we did—the liver metastases are regressing, and the bones look stable. Most importantly, the report shows those liver spots have shrunk significantly compared to the last scan.

We’re heading to see the oncologist this Wednesday for a follow-up.

One thing though—his creatinine spiked for the first time. It’s always been around 85, but now it’s hit 116 (and the upper limit is 125). I'm a little worried about it, honestly. Does anyone know how to help kidney function besides just cranking up the fluids? My dad drinks plenty of water—he doesn't have any issues with urination or fluid retention, he actually goes quite often, but that jump in creatinine still has me on edge.
I told myself I'd start him on some dandelion root tea, especially while he's going through chemo—can't hurt, right?—but I'll run it by his doctor first.

Anyway, the liver metastases are continuing to recede, and I'm really hoping they finish the job. Despite the diagnosis, I’m staying optimistic!

feralsurfer72 said:We’re in a smaller town, and the oncologist comes in from the major university hospital in St. Louis, covering this whole region. So, we're looking at St. Louis again. Honestly, it worries me—if we head there, we might just end up circling back to the exact same dead end. That’s why I was thinking about going private; it isn't even about having the extra cash. This doctor only did a gastric mucosa biopsy; he hasn't done a pancreatic biopsy.
My mom got a referral from her primary care doctor for oncology and radiation oncology at the University Hospital in St. Louis—just for an exam and an opinion. But it's the same oncologist working there.
This is my first time dealing with a disease like this, and honestly, the whole American medical system is a maze. I'm trying to wrap my head around what the next steps should be... I'm trying, but man...

Looking through the paperwork, the oncologist wrote:
Patient does not indicate oncological treatment. Proceed with symptomatic management via hospice/home health services. Use analgesics and opioids if pain occurs. (Some parts are actually unreadable to me.)
Is it even possible to assess everything—to "decide"—without a biopsy?

Which specialist can actually order a pancreatic biopsy?

I’d personally suggest heading to Boston or maybe New York—I know that’s a trek for you, but I really think you’ll get better care there.
Plus, if you know anyone who has a connection to a doctor in a major hub who could point you in the right direction or "nudge" things along, grab it. You can technically request a second opinion at any hospital, but the wait times are brutal. I don't know exactly how long, but people are waiting forever, and your situation isn't something you can just sit around for.
The absolute priority here should be getting that biopsy done—whether it's checking for metastases in the liver or the pancreas, it doesn't matter; you need to identify the specific tumor type.

For context, with my dad, his CA 19-9 and CYFRA markers were elevated, so they told us at one point that it was primary pancreatic cancer even though the scans showed nothing on the pancreas itself. Then a biopsy finally proved it was small cell.
My dad has metastases in his liver and bones; he has lung cancer, yet every single CT scan so far shows the lungs haven't changed. No lymph nodes are enlarged either. But the disease is widespread.

We got the CT results this past Friday, and they actually showed significant regression in the liver metastases, though the bone ones are staying exactly where they were—no change in the bones.

I'm crossing my fingers that you finally find someone willing to perform the biopsy and actually map out a treatment plan. I'm not sure if you saw my post from a few days ago—I reached out because your dad's story is almost identical to mine. My dad's first oncologist refused to treat him and only prescribed symptomatic care, and even then, he couldn't prescribe much because without the pathology report, he couldn't authorize any chemo.

Once we finally got my dad to a specialist in a major city and they performed the biopsy, everything finally started moving.

Again, I'm pulling for you. Don't give up!

feralsurfer72 said:My dad had an abdominal ultrasound on Feb 19th, then a gastroscopy and colonoscopy on March 5th, followed by an abdominal CT on March 18th.
Then on March 26th, he ended up hospitalized because a duodenal ulcer perforated, which led to X-rays and another gastroscopy.
After that, he had another abdominal CT on August 5th, and an MRI is scheduled for April 22nd. I just don't get why he needs two gastroscopies and two CT scans in such a short window. What else does he have to go through before they actually figure out what's going on?

We went through something almost identical with my dad—it started totally by accident when an ultrasound caught liver metastases. Then came the colonoscopy (which showed nothing), then his duodenal ulcers burst, landing him in the hospital where they did a gastroscopy (all clear again), then an abdominal CT, then a chest CT, and finally bone X-rays. In the end, the verdict was liver and bone metastases, terminal stage, and they couldn't even find the primary tumor.

They suspected the pancreas (his Ca 19.9 marker was 49, while the limit is 37) or maybe the lungs (CYFRA marker was 8 against a limit of 3), but the CT scan didn't show a thing.

He was sent home without any treatment plan—they basically told us there was nothing they could do and our only option was to keep cranking up the dosage on his pain patches.

So, we took him to a major medical center in Chicago to get a second opinion. They reviewed all the files, performed a liver biopsy, and the results showed a microcellular tumor. Microcellular lung cancer is one of the most aggressive forms, and in my dad's case, it was occult—meaning the primary site just wasn't visible.
Dad went through nine cycles of chemo. He just had another CT this past Monday, and right now, we're stuck waiting on the results.

It’s frustrating because they were just guessing with him too—first thinking it was the intestines, then the stomach, then the pancreas, then the kidneys, until the biopsy finally pointed to the lungs.

This whole ordeal kicked off in mid-May last year. For two months, Dad couldn't move because of the pain; he literally had to relearn how to walk. He dropped 30 pounds, but now he's gained 15 back, eats everything in sight, works in the garden, and runs around playing soccer with his brother like he isn't even sick.

I don't know what your dad's markers look like, but honestly, you should ask the doctors why they aren't doing a liver biopsy if they can't locate the primary tumor.
It could be the pancreas, it could be specifically microcellular (which loves to metastasize to the pancreas), or it could be something else entirely.

They need to nail down a diagnosis ASAP. You can't even start any kind of real therapy without a biopsy—doctors can't just play guessing games with meds if they don't know the specific tumor type.

I'm really pulling for you guys to get a diagnosis quickly so you can start treatment. Don't let them waste any more precious time.

Amanda Anderson87 said:I'm ending up on the topic that nobody wants to touch...

Basically, my dad (72) has peritoneal carcinoma and primary colorectal cancer. We’re still waiting on the biopsy results for the final diagnosis, but between the tumor markers, CT scans, colonoscopy, and barium enemas—everything points to this being the deal. The current plan is to operate on the colon and then hit the rest with chemo, but since we're pending that biopsy, he hasn't been officially handed over to the oncology team yet.

We’re fully aware of how heavy this is—the fight ahead of us and the prognosis, which, let's be honest, isn't great. Usually, I’m the "fixer" in the family—the one who digs, searches, and finds a way out of any mess... but right now? I feel completely useless. I’m killing myself at work during the day just to stay busy, and then I'm falling apart and crying my eyes out at night. I can't even find the energy to move or take action... I'm just totally blocked.

I remembered this thread tonight, and here I am, hoping someone might give me a nudge in some direction. Any direction, really—just something to get me moving again.

Dear Carl Kern66, you should head over to the Cancer Support forum and read the story from our friend Vedran—his journey will give you all the hope and fighting spirit you need, no matter how dark things look. You've probably seen him in the news, and he used to share his story right here on this forum. To us, he’s a total HERO!

I know exactly what you’re going through and how much this hurts—it was the same for me when we first got my dad's diagnosis. If I can offer any advice, it’s to try and find your strength, keep your head up, and prepare for the fight, regardless of how brutal it gets. You didn't mention how your dad is holding up physically or mentally, though. That part is huge—he needs to be in the best shape possible because it makes the battle against the disease a lot more manageable.
As for the actual illness, there are a few smart targeted therapies for colorectal cancers; for instance, Avastin is often used for metastatic cases and has shown good results.
For now, the most important thing is not to lose heart and to make sure your dad doesn't spiral, either physically or mentally. Try to hold onto some optimism, keep his diet healthy, and maybe look into immune support supplements (like beta-glucan or raw propolis) since you’ll likely have to wait a bit after the surgery before starting chemo anyway.
Hang in there, stay strong, and try to keep a positive outlook!

It’s been a while since I’ve actually posted anything—I still lurk here constantly, though. Honestly, reading through these threads helped me more than I can say when we first hit the wall with my dad’s diagnosis.

For those who haven't been following along, Dad has occult microcellular cancer. His lungs are completely clear, but he has metastases in his liver and bones. It was all caught by accident during an abdominal ultrasound back in the fifth month of last year. We got a biopsy done toward the end of the sixth month, and that’s when he officially started chemo using the PE protocol.

He just finished his eighth cycle this week. After the first six cycles, a follow-up CT scan actually showed some regression in the liver metastases and some bone repair, which felt like a huge win. That said, there are still quite a few lesions in the liver, so we’re sticking with the chemo for now.

The best part? He’s handling it incredibly well. No major side effects to speak of—he takes Ondansetron for the nausea, so he feels a little queasy but doesn't actually throw up. He’s eating everything in sight and is actually gaining weight now (he’s up about 20 pounds after having dropped 65). He even drives himself down to Washington, D.C. for his appointments. My dad is just such a fighter, seriously. 🙂

We finally took him off the pain patches this week since he isn't in any pain anymore. He dealt with a bit of a withdrawal phase for a couple of days, but he's over that hump now.

Looking back at where we started—after the initial shock, being told he had maybe a month to live, and getting discharged from the hospital to home palliative care—it’s wild. We pushed for a second opinion, finally got him started on chemo, and now he’s been fighting hard for eight months straight.

He stays positive through it all. Every single day, he goes for an hour-long walk, or he’ll play soccer with his brother in the living room using a tiny ball—he even goes for light jogs in the woods. We’re staying positive right alongside him, just hoping this stability lasts as long as possible.

If I can tell anyone anything, it’s this: just stay brave. Don't ever stop fighting for the people you love. Like someone once told me, as long as there's breath in your lungs, there's hope.

Sending love to everyone. :*

Hey everyone, I haven't posted in a while even though I’ve been lurking and reading everything regularly. First off, I just want to say how sorry I am to everyone here who has lost their loved ones lately. 😢

My dad finally finished all six cycles—it was the PE protocol, for those of you who aren't familiar, since he was dealing with microcellular carcinoma—and we’re heading in for his first follow-up CT scan the day after tomorrow. We'll just have to wait and see what the doctors say.
Keep your fingers crossed for us that the results come back clean. 🙂

Olivia Cook48, I am so incredibly sorry for everything you're going through right now. It hits especially hard because your mom is still so young. If I can offer any advice, it's just to keep fighting until the very end. Don't ever give up on her, no matter how heavy things get—just keep showing her how much she means to you.

Lily, please accept my deepest condolences. I am so incredibly sorry... 😢

Ashley Murphy, my dad actually has microcellular too—though his lungs are clear, he’s dealing with metastases in his bones and liver. We aren't even from Washington, D.C., but we made the trip over to Mount Sinai Hospital, and he's getting treated at their oncology department. Honestly, the doctors there are incredible. If it wasn't for the specific people who went above and beyond for him—especially considering how bad he was before starting chemo—he wouldn't be here today.
My advice? If you're looking for a second opinion, ask your doctor for a referral and book an appointment with an oncologist at Mount Sinai. You can call them or show up in person every day between 12:00 and 1:00 PM to schedule something. If you can, try to talk to one of the physicians directly and just ask—it doesn't matter that he's a patient over at Jordanovac; you have every right to seek a second opinion, and who knows, they might even decide to take him on.
Hang in there and don't give up. I know exactly what you're going through—we went through the same thing when the doctors at our local hospital sent my dad home without any treatment and basically told us that was it. Seriously, huge respect to the team at Mount Sinai for everything they've done.

I totally forgot to mention—we’ve been dealing with mouth sores too. My dad has always struggled with them, but now that he’s doing chemo, they’ve become even more frequent. On top of that, his gums get incredibly sore every single time after a session. I actually reached out to our dentist to see if there was anything we could apply to help speed up the healing, and she recommended methylene blue. She uses it for gum inflammation and similar issues; apparently, we can apply it multiple times a day to the entire oral cavity—lips, tongue, you name it, it all works.
Anyway, you can probably pick some up yourself or just check with your own dentist. Our dentist really understands what my dad is going through with the chemo treatments, and she’s honestly been such a lifesaver.

Hey everyone,

So, my dad just finished his third round of chemo following the PE protocol—for those who aren't in the loop, he’s dealing with occult microcellular cancer with some metastasis in his liver and bones. Honestly, he’s holding up pretty well. His bloodwork keeps getting better every single time; liver numbers are back to normal now, though his GGT is still hovering a bit high. His hemoglobin is slowly creeping up too (he’s taking 4 tablespoons of iron syrup daily). The best part? He isn't in any pain anymore. We actually had to scale back his patches from 100 down to 50 because they were becoming way too intense for him—every time I tried to change a patch, he’d end up vomiting the next day. We tracked it closely enough to be certain it was the adhesive and not anything else; even the 75 strength was too much for him. Aside from some natural propolis, he’s also taking Imunosal, which has been a lifesaver for us since it packs beta-glucan along with B vitamins, zinc, folic acid, and vitamin C—all of which help him absorb the iron he needs to take. He takes three capsules a day, which totals 900 mg of beta-glucan, and it’s actually reasonably priced ($48 60 capsules) if anyone is looking for info.
Just a month and a half ago, my dad couldn't move an inch—he spent two straight months stuck in bed. Now? He’s walking on his own and has even put on a few pounds. We had that third chemo session last Tuesday, and for the entire week afterward, he was out walking through the woods picking mushrooms. 🙂
Last time, the nausea was brutal—it hit him hard—so we picked up some Ondator (the tablets are called Ondator, but it's the exact same stuff as Zofran, $43 10 tablets). He took those and the nausea didn't stand a chance 🙂 so this most recent round was much easier to manage.
Anyway, his doctor barely recognized him when we showed up last week; she couldn't believe how much he'd bounced back since her last visit.

So yeah, we’re moving forward, one day at a time. We’re hanging in there, staying positive, and believing things will improve despite the diagnosis. Our first follow-up CT scan won't happen until after the 6th cycle, so we have a bit of a wait before we know more.

If anyone has questions about our situation, feel free to ask. 😉

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.

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.

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.

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.

Linda Patel21 - please accept my deepest condolences! 😢