mistyjackal842, I am so incredibly sorry for what you're going through. 😢
QUESTION: My Dad (lung and bronchial cancer with kidney metastases and one in the brain—that part was handled with Gamma knife; he’s already done 4 rounds of chemo using Cisplatin). About 15 days ago, his doctor basically said we should stop the chemo because it wasn't doing the trick anymore. They want to schedule a CT scan next to figure out if radiation is an option... But lately, the last 7 days have been brutal. He's in pain everywhere. The Zaldiar he was taking hasn't helped at all. We take him to the ER or the clinic, they give him Analgin IV., and he manages to get about half a day of relief. If they give him Tramadol, the pain just comes roaring back in two hours. Then it's back to the ER, and it's just this endless cycle. His GP even prescribed some Tramadol drops, but those are useless. Yesterday she gave us those TRANSTEC patches (35mg...), which I put on him last night, but he still spent the whole night suffering. This morning, it was back to needing another Analgin IV. injection. Does anyone have any suggestions? We live nowhere near a major hospital, so we've been trying to handle everything through outpatient visits.
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.
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, my dad's starting chemo using the PE protocol—you know, the one based on platinum. He just kicked off his third cycle today (the three-day version), and since tomorrow is a holiday, they're just handing him some pills to take at home instead.
Does anyone know what kind of side effects we're looking at? And honestly, is taking it in pill form actually the same thing as the IV stuff? What should we be bracing ourselves for?
Look, sorry if this is out of line, but does anyone know where I can pick some of this up locally? When people are fighting something this heavy, they need a little extra hope to hang onto, even alongside palliative chemo, right?
Ashley Murphy said:swiftpanther102, they’re doing both X-rays and ultrasounds... we did ours after the 3rd, 5th, and 6th rounds... basically, you can see how the chemo is hitting the tumor... If you notice Dad acting even slightly off—just little things most people wouldn't catch, but you know him well enough to feel something's wrong—don't hesitate to flag it for the doctors. Seriously, push them to get a brain CT.
He actually went ahead and got a brain CT done privately, without waiting for them to suggest it, and they found one small metastasis. An MRI confirmed it later, and he ended up getting treated with Gamma Knife in Washington, D.C. He just had a follow-up MRI recently to check for any changes. (I took a peek at the report myself before the doctor saw it, and from what I can tell, nothing new has popped up and that metastasis actually looks like it's shrinking).
I'm honestly not sure what the takeaway will be once the X-rays are done. 🤷 He's still dealing with hiccups and some back pain. 😢
brighttiger87 said:Thanks, Tyler James5. I'm currently using Hemopropin, but honestly, it’s doing absolutely nothing for me. I tried Hemoro Protect before that, too, and that was a total bust—zero out of ten, would not recommend. Now I'm looking at this Prokten ointment. Has anyone actually dealt with this stuff? Is it any good, or is it just more of the same? I'd love to hear if it actually helped anyone. 🙄
Honestly, during my pregnancy, nothing worked for me. I cycled through a bunch of different medicated creams, but they were all useless. My OB-GYN eventually suggested I give Fact a shot, which honestly caught me off guard—like, really? Even that didn't do a thing. Then, after my first baby arrived (look, I’m not trying to freak you out, and this isn't a guarantee it'll happen to you, but still...), that's when the real nightmare started. I ended up dealing with these massive hemorrhoids that actually cropped up because of an enema!🙂 So, I finally managed to chill them out a bit with some Pilex about three weeks ago. They haven't exactly retreated or anything, but at least they aren't hurting nearly as much! 🤣 I never quite managed to get rid of them for good. During my second pregnancy, I actually spoke up about the issues I was having, and honestly, that made a huge difference—the fallout wasn't nearly as bad. This time around, I went back to using Pilex and Hemo ex oil again.
Dad’s still dealing with this constant hiccuping thing, about 5 or 6 days out from his chemo session, even though he’s been taking meds for it for two days now. I gave his oncologist a call a couple of days ago to ask about a better way to stop the hiccups, and she basically told me it’s not actually a side effect of the chemo itself—she thinks it’s coming from the primary issue, something involving the vagus nerve. Once we wrap up this third round of chemo, they’ve got him scheduled for a chest X-ray and an abdominal ultrasound to see where things stand. So, what am I looking at here??!! Is this hiccuping stuff a sign the disease is progressing? And is it standard practice to run all those checks after three cycles of the HIPAA protocol?
rustyscout31 said:Sorry if this has already been covered here, but: does anyone have actual experience using Charles Darwin? I've heard this "coffee" stuff can help manage pain for oncology patients. Basically, my mom is dealing with a brain tumor—three metastases, one's already had surgery, and the surgeons at Mayo Clinic basically told us there's nothing more they can do. The cancer has spread to her liver and some lymph nodes, and the primary was in her small intestine. Right now, she’s on pain patches (Durogesic 25) and taking 24mg of dexamethasone daily. She’s refusing radiation and doesn't want to leave the house. I’m just trying to do whatever I can to keep her comfortable, since I've been told we're looking at the terminal stage.😢
From what I gather, Charles Darwin is mostly used for boosting the system... immune support and things like that. My dad takes it alongside AHCC.
My old man is still dealing with this constant hiccuping, and it’s been four days since his second round of chemo. We’ve tried those classic home remedies—you know, drinking water upside down, sipping on some Coke, all that stuff—but nothing seems to touch it. His oncologist told him to stick to the anti-nausea meds to help settle everything down, but honestly? It hasn't done a damn thing for the hiccups. :/ 🤷
I think I caught something about this online recently—apparently, those apricot pits have some components in them that aren't exactly great for you. Honestly, I’ve stopped eating them altogether. I can't give you the full breakdown right now because the specifics are slipping my mind, but I'd definitely suggest doing a bit of your own digging and looking into it. If I stumble upon more details or remember exactly what the deal is, I'll be sure to post an update here.
First off, hope you're all having a decent day. Hang in there and keep that chin up!!!!
So, I'm back with another question:
My dad’s been dealing with this nonstop hiccups since yesterday, right after finishing his second round of the PE protocol. The weird part is they only seem to stop when he's actually eating something, and I'm kind of at a loss for how to help him out. At least he isn't throwing up like he was after the first cycle—fingers crossed it stays that way because man, he really went through it last time.
Does anyone have any advice? His primary care doctor suggested giving him Reglan three times a day to knock the hiccups out.
Has anyone else dealt with this specific issue??? Any idea what might be triggering it or what we can do to make him more comfortable?
Pitance: Is the second round of chemo usually harder than the first?
So, my dad was dealing with vomiting for four days straight after his first session, and now he’s gearing up for round two. He’s on this PE protocol—something involving platinum—where they do it over two consecutive days: a 4-hour stretch followed by a 2-hour one. He’s still totally unsure about how to handle the next one. Even though his labs showed he actually handled the first round pretty well, he’s still terrified of what might happen next.😢
I wish the doctors would actually give us some real answers!!! here I am reposting my previous update Just giving you guys a little more info... My dad (lung and bronchial cancer with metastasis in his kidneys and brain—he just had Gamma Knife surgery) started his first round of chemo in Rhode Island using a platinum-based protocol (not entirely sure how the specifics work, but I'm trying to wrap my head around it). He was puking for days straight. We had to rush him to the ER for IV fluids; Reglan and Torcan-čepić didn't do squat, and things only started looking up after five days once I finally managed to track down some Zofran. Right now, he’s just completely wiped out and exhausted. He’s dealing with back pain and can't sleep either (he’s taking Zaldar for the pain, but it isn't cutting it, and the doctor suggested adding Ibuprofen, which he can't touch because of an ulcer). To top it all off, he’s even dealing with bleeding hemorrhoids now. He’s already talking about skipping his next scheduled sessions on the 23rd, 24th, and 25th since they follow that same protocol, and he’s got a follow-up brain MRI on the 29th (honestly, I have no clue how he'll handle an MRI right after chemo, considering how much the first round wrecked him). His labs look okay, though his hemoglobin is sitting at 109.
Does anyone have any advice?! Any recommendations?!
I picked up some medical-grade baking soda for him, but I'm not sure if I should have him drink it. I'm also wondering if he should take "that one thing everyone keeps talking about." In the meantime, he's taking Ganoderma and AHCCImunomax
Sending love to everyone, hang in there!! 07/13/2013 3:00 PM
Just checking in with an update... Tate (lung and bronchial cancer with metastases in the kidneys and brain—he just had Gamma Knife) started his first round of chemo in Rhode Island three days after starting that platinum protocol (not entirely sure how that works, but I'm trying to wrap my head around it). He was vomiting for days straight. We had to rush him to the ER for IV fluids; Reglan and Torcan-čepić weren't doing squat. It wasn't until five days later, once I finally tracked down some Zofran, that he actually started feeling better. Now, he’s just completely wiped out and exhausted. He’s dealing with back pain and can't sleep—he’s taking Zaldar for the pain, but it’s not helping much, and the doctor suggested adding Ibuprofen, but he won't touch it because of a stomach ulcer. To top it all off, he’s even dealing with bleeding hemorrhoids now. He’s already talking about how he doesn't want to go through the next rounds of chemo scheduled for the 23rd, 24th, and 25th under that same protocol. Plus, he has a follow-up brain MRI on the 29th, though I have no idea how he’ll handle that after how brutal this first round was. His labs look okay, except for his hemoglobin, which is sitting at 109.
Does anyone have any advice? Or maybe a recommendation?
I picked up some medical-grade baking soda for him, but I'm sitting here wondering if I should actually have him drink it, or if he should try "that thing everyone keeps talking about." Right now, he's also taking Ganoderma and AHCCImunomax.
Hey everyone, and huge congrats to unknown on the new baby!!!
So, Dad’s dealing with some heavy stuff—lung and bronchial issues, plus metastases in his brain, spine, and kidney. He got the official diagnosis about three months ago. Back on June 17th, he went in for Gamma Knife surgery, and we have follow-ups coming up fast. He just finished his first round of chemo following the unknown protocol (honestly, I don't fully grasp the specifics of that one). The side effects have been brutal—constant vomiting, and we’ve already had to hit the ER twice. Last night at the hospital, they were basically stumped, asking me, "Well, what are we even supposed to give him?" Tylenol and unknown tablets haven't done squat. They ended up giving him an injection of unknown at the ER last night. Now I'm stuck wondering what to pick up for him, but since it's Sunday, I'm limited, and he's already on day three of chemo since Friday. He can't keep any food down, and even sipping water is a struggle... 😢 If anyone has any suggestions!!??
So, Mom... Dad’s chemo is already being pushed back just two months after his small cell lung cancer and bronchial diagnosis. Apparently, they found some metastases in his kidney, and—we actually went ahead and did a private head CT—there's a little bit in the brain too. The oncologist in Cleveland suggested hitting him with chemo right away but recommended Gamma Knife in Los Angeles. After all the fighting over scheduling and getting a private MRI, he finally had the Gamma Knife procedure on June 17th. The doctor told us over the phone he'd start chemo on the 26th. But once he left, some other oncologist stepped in and pushed it back again, saying it was way too soon after the Gamma Knife treatment. Now she's rescheduled him for the 4th, 5th, and 6th (with a totally different therapy plan). Originally, he was supposed to get one session at 5 o'clock, then another a week later, but now she's telling him he'll be doing three days in a row—first one at 4 hours, then two more at an hour each. I'm completely lost because I wasn't there with them—got two little ones at home—and nobody even bothered to ask me for the specifics.
Does anyone have any clue why there are so many shifts and delays? Shouldn't they have jumped straight into the chemo? (By the way, he’s been taking Ganoderm and ImunomaxAHCC for over a month now.)
Melissa Martinez5 said:Svrkar’s gonna have to deal with radiation and chemo because of that throat cancer... The doctor mentioned something about him maybe being eligible for free medical transport... Now I'm wondering if that rule still only applies to people living far away from 31 miles since the Secretary recently promised to change it??
We’re at least 90 miles away from everything62 miles and nobody ever even brought up medical transport to us, no matter what was going on..