Posts by wiredotter75

ruggedmarlin2 said:Thanks for the reply, but what about other side effects? Weakness, loss of appetite, tingling...

OF COURSE I have them, but I don't think it's the Aloxi. Honestly, I think it's the oxaliplatin from the FOLFOX. It’s this crazy sensation with hot and cold—like, if my hands get even slightly chilly, they tingle all the way up to my elbows. Same thing if I accidentally touch ice. I also deal with brutal digestive issues. Ever since my surgery 41 months ago (with 39 months of constant chemo), my stomach is a mess. In those first few days, I'm hitting the bathroom maybe 20 times a day. After that, it "normalizes" to like 5 or 7 times. I guess I've just become an animal and gotten used to it, but my gut is constantly hurting. Appetite? Yeah, non-existent. I force myself to eat at set times. For the first 3-5 days, everything tastes disgusting—water tastes sweet, food tastes weird—but I force it down. Usually something bland like boiled rice or light soup, nothing with a heavy smell. Lately, strawberries actually worked, so I've been eating those. Weight loss is its own nightmare. Post-surgery, I dropped from 175 lbs to 130 lbs. When I started chemo, it took six months just to hit 137, and then it went up from there. I managed to reach 165, but now I'm fighting to stay above 160. I'm heading in for my 56th round this Wednesday, and I only just felt okay again 3 or 4 days ago. This round feels like it might be a bit tougher. Anything else? Chest pains, too. And sometimes I feel short of breath. Nothing major, I guess, but I definitely feel it. My doctor says it could just be anxiety. As for mood swings... I won't even go there. Other stuff? I don't really feel much else, even though their websites list a million things. I won't get into details, but my blood counts usually look okay after 18-20 days. I don't take anything special. I just mix some beta-glucan, some TPA lava, green spirulina, propolis, or maybe some aloe vera. I make sure to eat at least one banana or two pieces of fruit every day. I try to get grains in once a day too, even though I'm not exactly a health nut. Yesterday I had some sea bass with potatoes and a little red wine—of course I did. I'm basically a traveling zombie. I was born to die soon, I know that. Dukes C is incurable. But hey, miracles happen. People live, especially those with liver mets if they can get surgery. My peritoneum is a different story—billions of metastases just waiting to mutate and resist the second line of chemo. Maybe I have 3, 6, or 12 months left. Who knows. My big goal is the World Cup in Brazil. They told me after surgery I'd have 6 months, and here I am at month 41. SO YEAH, you can live forever. You can't give up. I get why older people might feel differently—if I were 70, I probably wouldn't bother with chemo because it's so much harder, even if cancer moves slower in them. But I got sick when I was 39, I'm 42 now, and yeah, I'm gonna fight until my last drop of blood. Everyone fights. We ALL love life, even if it's just for one day.
I don't take much for the meds. Just Tramal or something similar for 3 or 4 days after chemo just so I can get a little high, you know? Smalltown for the diarrhea for a couple of days. Normabel for sleep three times a week, and that's pretty much it. If anyone has questions, just ask. I'll tell you straight as a layman and a patient who's survived 41 months and 55 rounds of chemo. Cheers everyone...
Thank God I don't need a diaper or anything. Now I'm just waiting for warmer weather so I can soak up the ocean and enjoy life!

Can someone hit me up who’s been on Oxaliplatin? How much can you actually take before it breaks you? I’ve heard—and seen—that this stuff is BRUTAL, and people say you shouldn't go over six months. Well, I’m currently on my second line of chemo, which is the last stretch before they let me head home, and this is number six. Has anyone out there actually finished 30 cycles or something?? I met some guy from Sweden who went way past 40... seems pretty wild to me. Cheers.

ruggedmarlin2 said:Can anyone who’s used Aloxi during chemo tell me how it actually works? Does it just help with nausea, or does it tone down other symptoms too?

Look, I’m on Aloxi right now for my 6th round of the FOLFOX protocol. Before this, I went through 49 rounds of FOLFIRI plus Avastin, and they had me on Emend back then. In both those cases, I never once threw up. But then, when I switched over to FOLFOX, nothing was working, and I basically lost my soul—about 32 bouts of vomiting on the first day of chemo. Once I told my oncologist, he put me on Aloxi and everything’s been fine... at least that's my take on it.
As far as blood counts go, the big thing is the neutrophil and leukocyte levels. That neutrophil number needs to be above 1.5. So, if you have, say, 0.4 times a leukocyte count of 5.0, that gives you a 2, and you’re good to get the chemo. That's some solid info for you regarding that part, anyway; I don't know about all the other parameters... hehe, I mean, I've only survived 55 rounds of chemo myself...

Thanks, Dr. Hrvoje. You shared so much info that everything I tried googling couldn't even touch. I guess my oncologist will figure it out; he seems pretty solid, but whatever. This is the last CT from April 10, 2013, now on FOLFOX..
And this was the one before last, when they switched me off FOLFIRI + AVASTIN..

I’ve got about 15 CT scans total. Plus five PET scans, so I’m basically radioactive—I probably glow in the dark sometimes 🙂 ,,please don't scare me with the response. I know I'm a walking zombie if there's no cure, but I still hold onto hope for a miracle. THANKS AND BEST
I don't take many pills. Just maybe one Smalltown during the first two or three days after chemo. I get about 20 bouts of diarrhea, but I don't head to the ER; I just try to survive it. I'll take a Doret to help for those first couple of days, and maybe some Xanax more often because sleep is hard to come by. Otherwise, I stay away from most stuff. I take beta-glucan, and lately, I've been doing spirulina, but before that, I was regular with royal jelly. Propolis is a must, plus some aronia, and that's pretty much it. I eat normally—I even hit up McDonald's once a month. Mostly I'm fine, except a virus hit me in the last 15 days, so I've got this cough. Now everyone wants to play doctor; they actually told me I have fluid in my lungs and that's why I'm coughing, haha. It's really just a throat infection and a cough. I've got chemo next week though, so I'm worried they might not let me in... so yeah, that's me in a nutshell. And this is my PET scan from Feb 2010, right when I started chemo after surgery..

I guess it doesn't matter what you guys say, I truly believe I'm going to beat this.... and there'll be a miracle. This is the pathology report from after the surgery, Jan 5, 2010..

wiredotter75 said:Hey
Please don't turn down the chemotherapy. You could really mess things up for yourself if you do. Things will settle down eventually. Maybe part of the issue is just mental, but hey, take it easy. Trust me, I’m hitting the bathroom 20 times a day, so I get it... maybe your situation is even worse since the vomiting is what really drags you down. Just try to find *something* you can stomach. Give it 5 or 6 days, surely some flavor will stick. And who cares if they aren't sure where it's located? For me, it's pretty clear—my death warrant is already signed. Not that I'm looking for pity or anything, it's just how it is. I've been tracking my body from the start and I know the drill. Everything was fine during the first round of the chemotherapy protocol, but now my body is starting to quit on me. Now there's this ascites thing. People say that happens in the terminal stage, but I haven't gone in for a drainage procedure yet. I don't think I need to. I still believe the ascites might clear up, maybe because those CT scans aren't 100% accurate anyway—not by a long shot. The last scan showed a narrowing in the large intestine, but this one doesn't show that, though it does have ascites. Last time it was one thing, now it's another...
Whatever, we all know what Stage 4 with metastasis in the peritoneum looks like. I've seen the pictures online...
But YOU simply cannot give up,,,hey, take care,,

BTW, I was in the absolute worst shape right after surgery and at the start of chemo rounds 1 through 5. I dropped from 180 lbs down to 127 lbs, and I'm 5'11"... so you can imagine how rough that was.
Now I'm at 165 lbs... though this recent flu hit me hard and dragged me back down to about 162. Try some Prosor, Ensure, boiled rice, peeled apples, or maybe some dry toast. Personally, by the second or third day, I can handle some white coffee with stale bread... stuff like that. You just have to fight. Once you get cancer, it's nothing but a fight. Don't stress, just take it slow, one day at a time.

Kevin Bishop10 said:Victor, you're a legend! 55 rounds of chemotherapy and you're still fighting! You don't just deserve a cure, you deserve a long, happy life. I'll be praying for you tonight!

I finished my second round of chemo eight days ago and I'm still totally wiped out. Honestly, I have no clue when I'll feel normal again. It's constant vomiting, nausea, exhaustion, sickness—all the usual crap that follows chemo... After the first round, I managed to bounce back enough to take the second, but looking at how things are going, there's no way I can handle a third. I just can't! Maybe I'm just weak, or a coward, whatever, but I barely have the strength to stand up at home, let alone make it to a third cycle. My nephew has his graduation this Sunday, and I honestly doubt I'll even be able to show up. That's what hurts the most, I guess.

That's why I respect people like Victor so much. You deserve the absolute best. To me, you're a hero among heroes.

Of course, they still haven't pinned down exactly where the adenocarcinoma is, but they're being relentless about pumping me full of poison. I've developed this issue where I'm throwing up before and after eating. Just thinking about food makes my stomach flip. I try to force myself to drink or eat anything, but it just won't stay down. One sip goes in, two immediately come right back out! (same with bites of food). I want to fight, I really do, but my body isn't cooperating.

I'm out of gas. I need treatment.

P.S. What happens if I just say no to the next chemo cycle?

Hey
Please, don't bail on the chemo. You could seriously mess up your chances by doing that. Things will settle down eventually. Maybe part of the struggle is just mental, but hey, take it slow. Trust me, I'm hitting the bathroom 20 times a day, so I get it... maybe yours is even worse since the vomiting is so depressing. Just try to find some food that sticks. Maybe in 5 or 6 days, you'll actually taste something again. And you've got good odds. So what if they aren't 100% sure where it is? In my case, they know. I've basically been handed a death sentence. I'm not looking for pity, it's just the reality. I've been listening to my body from day one and I know how this goes. Everything was fine during the first line of chemo, but now my body is starting to quit on me. Now I've got ascites, which everyone says happens in the terminal stage. I haven't gone in for a puncture yet; I don't think I need to. I'm still holding onto hope that the ascites might go away, maybe because those CT scans aren't always perfect—not by a long shot. The last scan showed a narrowing in the colon, but now that's gone, though the ascites is here. Last time it was one thing, now it's another.
But whatever, we all know what Stage 4 with mets in the peritoneum looks like; I've seen the pictures online.
But YOU simply cannot give up,,, hey, wishing you the best.

Kevin Bishop10 said:Greetings from Boston!

I just got slammed by my first chemo session on May 18th! I'm only just strong enough today to actually sit down at the computer. Honestly, I'm not sure about what's left:

1. For occult adenocarcinoma (unknown primary), they assigned me an irinotecan + cisplatin chemo regimen—6 cycles, one day on, 21 days off. I haven't been able to find out if this is even the right protocol?!

2. Even though I was given (and took) Zofran tablets for nausea and vomiting, they didn't do squat. Is there anything stronger out there?

3. For the first four days, I couldn't keep anything down—no food, no water, just puking! Does anyone have a tip on how to eat *anything* that actually stays in the stomach?

4. Is there any rule for the second cycle? Does it get easier, or maybe harder?

If you guys have any advice, I could really use it. This hit me hard physically, and I have no idea how I'm going to pull this off five more times!

Thanks and cheers from Boston!

Hey, let me try to answer you. I'm on the FOLFOX protocol for Stage 4 colon cancer. I've done 5 rounds, and before that, it was FOLFIRI + Avastin—49 sessions total. My chemo lasts two days every time; I go in on Thursday and head out Wednesday. Cisplatin is similar to oxaliplatin, and I deal with those same side effects. It takes me about 4 or 5 days before I can even taste food or water again. Also, the spot where they do the chemo in my vein gets super swollen and I feel these tingles—like a billion little stabs all along that 10cm area. Though, I noticed once or twice when they went deeper into the vein, I didn't feel anything at all. As for the vomiting... the first time they switched me to FOLFOX, I threw up like 20 or 30 times. I seriously thought I was dying, haha. When I told the doctor, he looked surprised, like I was part of some tiny 5-10% group that reacts that way. Next time, they gave me Aspirin and since then, the vomiting stopped. My routine goes like this: first, prep with things like Normabel, Tramadol, Dexamethasone, and maybe Pepotran... then comes the oxaliplatin and leucovorin, followed by FU 5 via injection and a 20-hour infusion. Same thing the next day. I hope I didn't miss anything, but Campto and irinotecan were part of the Chemotherapy protocol. Also, oxaliplatin and all those chemo drugs cause these temperature sensations, or this feeling in your chest like you're having a heart attack, stabbing pains, etc. It’s really important to monitor your heart, though weirdly enough, they haven't even done an EKG for me once. Anyway, my advice: try to find something to eat, literally anything. I don't eat much during it and drop like 2 or 3 pounds immediately. Once I'm home, I stick to plain boiled rice or tasteless grains. The main thing is that the food shouldn't have any smell, because I can smell everything 10 to 20 times more intensely than usual, and water tastes sweet to me, which makes me want to puke. I can't taste food, but the smells... man. Everyone reacts to chemo differently. Just hang in there—take comfort in the fact that you only have 6 cycles and then you'll be okay. I'm heading in this Wednesday for my 6th FOLFOX cycle—that's 55 chemos total for me—and there seems to be no end in sight; I'm treating until progression, then I'll go home. I think I met a guy once who did 44 rounds of FOLFOX, which might be a world record, but they had to stop him because his reaction was so bad and the platinum is toxic. Hang in there. Cheers from San Antonio.

Just figured I’d chime in here too. Angela Wright knows me from the forums, and I know her (wiredotter75). I’m currently grinding through month 41 of dealing with colon cancer and peritoneal metastases, plus 3 out of 6 lymph nodes... I won't get into all the gritty details. After 36 months, things progressed following my first line of chemo, so now I'm on my second—and maybe my last—round of FOLFOX. My latest CT scan actually showed a tiny bit of regression, but for the first time, there are slight signs of ascites. I'm pretty sure that means I'm hitting the end of the road, terminal and all. But I gotta ask, has anyone dealt with ascites and managed to hang on for another six months or even a year? Also, is anyone taking Flobian capsules for digestion? My gut is a mess—constant, heavy diarrhea. It's partly the chemo and partly the tumor itself since about a meter of my small intestine is compromised. Nothing really works, not even all those probiotics and stuff; only Pepto-Bismol helps a little sometimes. On top of everything, I caught some virus and I've been coughing for seven days straight with no relief. Took a dose of Amoxicillin and had a fever of 101.4, so the fever's gone but this cough just won't quit. Anyone got an alternative for a cough? Sinupre syrup didn't do squat for me. I’m running out of ideas, especially since the cough gets worse at night and my temp creeps back up to 98.4. I feel like crap, and I need to be 100% by next Wednesday for my session (49 units of FOLFIRI, Avastin, and 5 units of FOLFOX). PEACE TO ALL..