Back here again, desperately scouring the internet for any scrap of info that might actually help... My husband finally made it home eight days after this rushed surgery at the Mayo Clinic—they’d removed a polyp during a colonoscopy the day before, then ended up cutting out a 10 cm section of his large intestine and performing an anastomosis. But things started going south on day ten, and now he's back at the hospital in the ER at the local medical center. It's already turned into sepsis, so they had to remove even more of his colon, and he's getting a stoma. Thank God his other organs haven't been affected yet, but the whole thing is just... heavy. The kicker is that by day six after the initial surgery, he still wasn't able to take anything by mouth. A tiny bit of water, maybe some tea the day before yesterday, but nothing since yesterday. They pulled the tube that drains everything out the day before yesterday, but then they put it right back in... they claim it's to let his irritated stomach "rest," but honestly, I’m terrified that's just a convenient excuse... There’s some content in the stoma, but it looks like the real issue is air trapped in the small intestine. For the last two or three days, I feel like we’re being fed these half-baked, incomplete stories... His doctor isn't even back in until tomorrow (Saturday). My husband is absolutely crushed mentally, and physically, he’s just so weak. Back when we were dealing with Kaiser Permanente, a physical therapist came by every single day, but here? He only saw one the day before yesterday. He swears nobody even helped him sit up or move all day yesterday, even though the nurses are telling me something completely different... 😢 What am I supposed to do? So much went wrong from that very first procedure, and it feels like I can't just sit here and wait for the next disaster to strike 😢 Does anyone here know anything about baroreceptors or how they play into helping with these kinds of postoperative complications?
Hey there, sending strength to everyone out there fighting their own battles or watching their loved ones go through the ringer with illness... I often find myself thinking about how much this community helped me back in the day, even though I haven't been active here for a while. Honestly, it feels like it’s been over a decade since then—I totally lost track of the years... Back then, my mom was going through chemo after being diagnosed with Stage 3 colon cancer. She’s doing great now, she’s alive! And she’s holding up really well at 78 years old. 🙂 Sadly, my husband’s father had a similar diagnosis—actually, his was caught earlier, at Stage 2—and he didn't make it a few years later. I guess it could have been luck, or maybe just a difference in temperament... my mom is a completely different person and made massive changes to her diet and lifestyle right after her diagnosis... or who knows, maybe it was something else entirely.
Since genetics play such a huge role in colon cancer, and my husband looks just like his dad (he's got that same foodie build), I'm back here again... This time, he was a little late for his check-up—well, the second time he missed one, actually—and a polyp has progressed a bit (it's carcinoma in situ now). There’s been a lot of other chaos too (like picking the wrong surgeon last summer because we were just trying to speed things up, but I'll save the rant about that guy for another time—if anyone is planning on surgery at the local hospital near us with Dr. T, based on our experience, just say NO). To make a long story short, my husband is currently waiting for a surgery date at the Mayo Clinic in Washington, D.C. He’s been waiting for three months already. They keep repeating tests—he’s had three colonoscopies, and next week he’s having a fourth (!), plus they've taken two biopsies already... but still no surgery date. I get that there are more urgent cases out there, but if anyone here is familiar with how things run at the Mayo Clinic—is it normal for the wait to be this long?
urbannomad30 said:Imagine Arcade Fire and David Bowie sharing a stage again... man, that would be absolutely legendary 😁
👍 but honestly? Dream on, because I don't see it happening... It feels like ever since Bowie had to pull the plug on that last tour, he’s been pretty much staying out of the spotlight, right? I mean, who knows what could actually convince him to fly all the way out here to the States 😢 I know, I know, I'm totally drifting off-topic here, but I just can't help myself http://www.youtube.com/watch?v=1-wEBmLht5g
Amanda Barrett4 said:I've got some inside info, apparently Kings of Leon might roll through town this year... if you're into that kind of thing, though there’s also some buzz about The Kooks 🤷
Isn't that just a little too much wishful thinking, though? I mean, come on, they've already got Kings of Leon 20, 22 and 23.06. booked in London (O2 Arena and Central Park)!!! My bad, just realized someone beat me to the punch with that comment...
Amy Hill55 said:Hey everyone, since you all seem to know your stuff when it comes to this kind of thing, I wanted to ask... my dad had surgery for colon cancer almost two years ago, and his latest tumor marker results came back slightly elevated—his CEA is sitting somewhere over 5. Is that actually something to worry about, or...? Thanks for any help!
Look, I can't give you a definitive answer on that (though I'm hoping someone smarter than me jumps in🙂, I can only really share what we've dealt with). It’s been about two years since my mom’s surgery too, and her CEA is right there on the edge—it hasn't crossed the line, but it isn't exactly low either. Honestly, I have no clue if that's a reason to panic or not. She gets regular checkups and does a CT scan (I think it's an MSCT) which has looked good so far. Did your dad get a CT done yet? If they haven't sent him for one, I'd bet they will once they see those marker levels, and then you'll actually have some real answers...
placidfalcon said:hey, does anyone know if there's a cheaper place to pick up Biobran powder than Bio&bio? thx!
Hmm, yeah, I've been wondering about that too... I think I read somewhere once about a pharmacy near Dolac Market, but honestly, I can't quite remember... If you're sticking with Bio&bio, at least grab one of those loyalty cards—if you're buying Biobran regularly, you'll rack up enough points for a discount on $33 pretty fast... Let me know if you dig anything up...
Drew Thompson5 said:My mother-in-law is about to start chemo soon; she's got colon cancer that's spread to her liver and bladder. They managed to get the mass out of her colon, but now comes the really hard part—the actual fight. Please, if anyone can help me find something to take to make the side effects of the chemo a little easier on her... I would be so grateful.
I haven't been hanging around this forum for a little while, so I'm not sure if this has come up lately, but... my mom went through six cycles of chemo following the Mayo Clinic protocol—which, looking back at what people say here, seems like it might actually have relatively mild side effects compared to some other stuff—after having surgery for advanced colon cancer. Besides the medical side, she stuck to a macrobiotic diet, which I honestly think is what helped her push through the treatments more easily... though I know no doctor is ever going to tell you that, so if you decide to go that route, please, please talk to a specialist to get a solid meal plan first... she also used some supplements. Back then, she was taking BioBran (it was a powder, I think, maybe 1000mg). You should look up what it does online... She struggled quite a bit with diarrhea, which she managed somewhat through her diet—lots of rice and adding Kuzu to her meals—and for those mouth sores that popped up during just the first two cycles, she rinsed with sage tea (definitely something you want to start doing from day one of treatment) and used Gelclair for her mouth. Given those metastases you mentioned, I'm guessing your mother-in-law might end up on a different kind of regimen... maybe Avastin? That’s what they call a "smart drug," so maybe the side effects won't be quite as brutal... I also think it’s super important to focus on how she recovers from the surgery and builds up her strength before the chemo kicks in, and then focusing on detoxing her system afterward to minimize the drugs' negative impact... Keep us posted so we know how she's doing! We're all rooting for her...
feralharbor89, those symptoms you mentioned sound pretty heavy, and since you’ve dealt with colon issues yourself, I know you truly get how serious this stuff can be. But honestly, until those lab results actually come back, nobody knows anything for sure... it's all just speculation at this point. I wonder if there's anything you can even do in the meantime, maybe push for some extra testing or something? What are the blood work numbers looking like? It’s definitely worrying, but I really don't think it has to be colon cancer. Even if it turns out to be the worst-case scenario, please don't go comparing your situation to what your grandma or great-grandma went through. Treatment methods and the whole approach to managing this disease have changed so much over the years, and patients—despite all the hurdles they face—actually have way better odds now than they used to. I'm crossing my fingers for you... please let us know once the results are in!
On another note, my mom had surgery for colon cancer about 16 months ago. She's feeling pretty good now... though I’m still sitting here anxiously waiting on her follow-up tests. Her next round of scans isn't for another two months.
My father-in-law is going in for his second surgery today (ten months after the first one). The PET scan showed some suspicious changes, which is scary. Since his blood work and other tests came back fine, we’re desperately hoping the scan was just a false alarm... has anyone here dealt with PET CT scans before? I know it's supposed to be the most detailed imaging out there, but I've heard stories about how it can pick up on random inflammation and give you a bunch of false positives...
That’s awesome Maria Fox! I am seriously riding that wave of good news with you, especially since my own mom just got some solid results back too... a full year after her surgery and all those treatments, her scans—CT, colonoscopy, everything, plus the markers 🙂
... but honestly, even though I’m keeping my mouth shut and acting totally fine (because she’s finally starting to breathe again and actually feels optimistic about the results), I just can't shake this nagging feeling in my gut... See, the marker levels are technically still within the "normal" range, but they’ve been creeping up steadily through three different tests since the surgery. Her next checkup isn't until December, which is basically six months since the last one, and I can't help but wonder if her oncologist should have scheduled something sooner, maybe at the three-month mark... or at least sent her in for more imaging, like a chest X-ray or a PET scan or something... 😕
urbandriver45 - don't you dare give up the fight! I'm really holding out hope that things turn around soon and that this whole mess is just some temporary phase... just a rough patch... I'm pretty sure the Mayo Clinic has a dedicated Pain Management Clinic on-site, and if I recall correctly, they should have something similar over at Mount Sinai Hospital too. 👍
Ugh, I hate doing this, but I’m going to copy over some sad news from the For a New Day Association page that went up a couple days ago. It might not even be my place to share this, and maybe it doesn't belong in this specific thread, but I honestly didn't know where else to go... I just kept thinking—slyseal28 has always been right there by our side through her own massive struggle, so it feels only right that we all stay with her in our thoughts and prayers, even if it's just in spirit.
"At 4:40 today, we lost our dear friend Zoran Golubović, one of the founders of our association. Zoran fought his own long battle against sarcoma, proving himself to be such an incredible fighter because he simply refused to back down until the very end. We’ll always remember him for that unique personality of his—always ready with a joke even when things were at their absolute worst—and as one of the loudest voices fighting for the rights of patients battling cancer. He left us brave and proud, and that’s exactly how we’ll hold onto his memory. He passed away at home surrounded by his loved ones, just the way he wanted. He didn't even know it was coming... he just fell asleep. See you on the other side, Zoki..."
slyseal28, I honestly don't even know what smart thing to say... I am just so, so sorry! I really hope you can find the strength to keep fighting and to keep looking out for everyone else in this fight... despite everything.
And here is another link for anyone who needs more context on what happened. They also mentioned that the service is this Thursday...
Sam Murphy33 said:I’m in absolute shock. My mom’s initial tests, markers, and CT scan are all pointing toward suspected colon cancer with liver metastases. She’s heading into the hospital this Wednesday and from everything I’ve read online, it looks like it would be almost Stage 4. She was doing fine otherwise, just living her life, though she did have some minor digestive issues and hemorrhoids. I honestly have no idea how to handle this... Please, if you can, tell me what to do or how I should even act around her. This is just horrible.
Look, everyone here has walked through something similar, so we truly get what you're going through. At first, it’s just this massive, crushing shock, and that’s totally normal... but you really need to pull yourself together as soon as you can—not just for your mom, but for your own sake too. You can't let yourself spiral into despair; you have to face this head-on and fight, because fighting actually WORKS! Angela Wright already mentioned the most important thing... My own mother went through surgery for the exact same thing about a year ago. I can tell you firsthand that I felt pretty lost back then too, but I made sure to be her rock, the strongest support system she could possibly have in that moment (and still does). The surgery went smoothly, recovery was fast... and the chemotherapy had relatively mild side effects, too. A year later, my mom is recovered and feeling fantastic. Sure, the lab results might not be perfect, but compared to how terrifying everything looked a year ago—it’s a win! Stay strong! Think of this as just another brutal life test. It's an obstacle meant to make things harder, I guess... but you guys can definitely get past it!
Casey Palmer5 please take my deepest condolences! You were such a beacon of optimism, which this forum seriously needs right now, especially after we lost Dina 😢 ... I honestly couldn't have imagined everything would move this fast... But listen, we're still all right here for you if you ever need anything at all!
And I can't help but wonder what happened to that damn 😕 They haven't checked in since the end of last year. Seriously, someone reach out!
Richard Myers4, my mom actually went through surgery for RDC, Dukes C, about a year ago. The tumor was on a linear flexure, so they had to remove about 80cm of her colon. Five lymph nodes were positive. She recovered pretty well, though, and did six cycles following the Mayo Clinic protocol. They didn't do radiation because they don't usually recommend it for that specific tumor placement. Her tests back in February were totally clear! There was something tiny on the liver that wouldn't even show up on a CT scan (apparently it doesn't show up on any other test either), but since her liver enzymes were fine, they didn't send her for more testing. We should get the results from yesterday's MSCT in a few days... but I'm still feeling pretty anxious about it...
Which hospital was your dad operated in? If I were you, I'd take those results and try to get a second opinion regarding chemotherapy at the Mayo Clinic over in Chicago. We actually had to travel with my mom for about a month—maybe a few extra days—after her surgery. Though, I still don't really get why we had to go, since nobody even examined her there and we showed up with all our paperwork ready (including fresh colonoscopy results and markers)... I'm keeping everything crossed that your dad recovers quickly and strong so he can keep fighting!
Casey Palmer5 said:I was actually just about to jump back in here and edit my post to mention adding curry—specifically turmeric—but then my internet decided to die on me. Honestly, it worked out better because I finally managed to get some decent sleep... anyway, which kind did you pick up and where from?
Just jumping into this thread real quick, even though I haven't had a chance to catch up on everything everyone’s been saying... We're definitely throwing turmeric in there. Just use pure turmeric, don't bother with those pre-mixed curry powders. I toss it into risotto or into miso soup. A teaspoon or two, whatever you can handle. If it's your first time, maybe start small since the flavor is pretty intense... I even use it when I'm making vegetable stock for soups. We don't even touch those processed bouillon cubes anymore, seriously. I usually grab mine at Bio@bio. Now, I really don't want to sound like I'm running an ad for them—that's totally not my intention—but man, I wish more stores carried this stuff and, you know, at much lower prices. You might want to check out Whole Foods too... or maybe Grain... probably Garden and Gea have it as well? Ginger too! Definitely! During the winter, stir it into immunity-boosting soups, or just throw it in right at the end of cooking to help settle your stomach... you can even juice it and massage it onto your skin! There’s a whole bunch of other info in that book from Makrobioticka Domac ljekarna... hmm, let me think, the book is actually at my mom's house and I was in such a rush last weekend that I completely forgot to look up that recipe for umešokuzua I promised to share here. My bad! I'm in a bit of a rush so I gotta run, but I'll post again if anything else pops into my head... Keeping all my fingers crossed for you guys! Stay strong! By the way, my husband and I are divers, so I totally get where you're coming from. Of course you're going to get back out there in the water! I don't see any reason why you wouldn't!
Kate Reed63 said:thanks for the reply, if you could just double check that kuzu powder stuff for me I'd be super grateful because we don't really have those kinds of shops around here, so if you find anything let me know where to look in NYC or maybe Chicago if you happen to know thanks
If you're hanging out in Chicago, you can definitely find it at a Bio@bio store (over on 24th Street). Not sure about the others though. In NYC, they have their own spots too (like on Ilica72, Jurisicev 28, down on level -2 of the Avenue Mall, or over at Ozaljska87). I really hope nobody thinks I'm trying to run some kind of ad campaign here, because honestly, I feel like I've already recommended kuzu to someone else recently... I'm pretty sure you can pick it up in other health food stores too. I'll dig through my books—specifically my Makrobioticka Domac ljekarna one—to find the recipe for that drink since I haven't made it in a while... I think it's actually an "umeshokuzu" tonic, boiled with umeboshi plums for maybe 20 minutes or so until it turns translucent... Anyway, you can stir it into soups (just keep stirring toward the end of cooking and it thickens everything up a bit), fruit compotes, pudding... now that I think about it, my mom used to drink it raw too, probably mixed in with some supplements (maybe Bio@bio, I can't quite remember)... Are you from near Ogulin? If you can't track it down in NYC, but it's easier for you to swing by Kansas City, just shoot me a private message and we'll figure something out... I live right near KC, so I wouldn't mind dropping it off for you, no biggie!
Kate Reed63 said:...she had terrible diarrhea at first, which is starting to settle down now, though it's still painful and just totally exhausting her, and the doctor mentioned this could drag on for 2-3 months,...
Hey, sorry I've been MIA for a bit, so please forgive me if any (potential) advice from my end comes a little late... I don't have any direct experience with digestive issues like this, but my mom dealt with really intense diarrhea after her colon surgery, and it kept coming back even after chemo. We felt like we finally managed to get things under control using some kuzu powder (you can usually find it at health food stores). I actually read later on that moms use it to help stop diarrhea in small kids too. You just stir a teaspoon or two into some broth or make a specific drink out of it. Ask when you're buying it, or I'll let you know once I dig through my books at home... Also, cooking rice for a long time until it's almost mushy (an Instant Pot is probably best for that) can really help...
Right now, my whole obsession is just keeping infections at bay. 👍
gentletiger46, I’m not usually one for seeing new faces pop up on this forum, but I have to say, that optimism you’re radiating in your posts is exactly what we need right now. I don't know much about Hodgkin, personally, but I know a friend's mom was going through treatment the year before last. If I recall, she did both chemo and radiation (I can double-check if anyone actually needs me to). Her hair fell out—pretty sure it started after a few cycles—but then it grew back, and apparently even thicker than before 🙂... and now she’s doing great! As for me, I haven't been posting much... just trying to gather my strength because honestly, I've been feeling totally drained, both physically and mentally, after everything that happened last year... Mom has some new checkups coming up at the end of May. So far, she feels amazing. Almost too good to believe, really, and I'm always half-expecting something to be hiding behind that "all clear" feeling after last year's diagnosis (Dukes C).
I wanted to jump in regarding the infection prevention stuff—back when Mom was doing her chemo, we used tea tree oil. Just a few drops on a cotton pad or mixed with water (maybe 20 drops in a small glass) and sprayed around the room. It’s supposed to be one of the best natural disinfectants out there (gentletiger46, since you're the pro, you probably know more about this than I do?)... plus, it smells nice. You just have to be careful about where you buy your essential oils; you want the purest stuff possible (best bet is a pharmacy or a high-end health food store), ...a little bottle is usually around 40-$17
Anyway, that's a little bit of my two cents. I just want to wish you all continued courage, and fingers crossed for success, keep fighting... especially you, fighters!
Laura Morris16 said:I was wondering if anyone here knows which vitamins are actually best for boosting immunity after an operation like this. He really needs to get his strength up before he can start radiation therapy. .... Once he’s recovered enough, Dad will have to go for radiation at a hospital in Washington, D.C., so I'm curious if patients like him are entitled to ambulance transport, or if they’re stuck driving themselves into the city every single day from out of town?
At the MD Anderson Cancer Center, they told my mom she’s actually entitled to ambulance transport for her chemo sessions! I’m just not totally sure what the exact procedure is, or if someone—maybe Dad’s oncologist or even his primary care doctor?—needs to sign off on a recommendation first? Maybe some of the ladies over at the Non-profit organization might know how that works... When it comes to vitamins or supplements, there's honestly a massive amount of stuff out there. Everything from Beta-glucan to Native Propolis (you can find both at most pharmacies)... then you've got Noni, Aloa... and that Imunomax you mentioned... My mom started out with Beta-glucan and then moved on to BioBran and Green Magma Pro (which you can usually find in health food stores or maybe certain herbal apothecaries). Apparently, you can take BioBran indefinitely, and honestly, I think it really helped her push through her treatments more easily. Her blood work definitely improved... and if you ask me, I'm pretty convinced it was because of those supplements. I mean, I don't think anything could hurt, even though I doubt any of the doctors are going to officially recommend taking extra supplements...
Amanda Miller69 said:Does anyone have any idea what happened to sjeban? I was just scrolling through some of her old posts and it totally made me think of her...
Honestly, I’ve been wondering the same thing for a while now...🤷 S, please reach out and let us know you're okay! We're really hoping everything is alright with you.
Susan Diaz91 said:2. How long do you actually have to wait for chemo??? Are there like waiting lists or some kind of order to things? 3. Will the hospitals in Washington, D.C. actually accept the test results from San Francisco? (Because I've dealt with this before—like how Petrov won't acknowledge anything from Vinogradska) 4. Is it possible to stay overnight at the hospital while getting chemo... because honestly, I have no clue what I'm going to do since I'll be about 8 or 9 months pregnant by then, and my Mom will be coming back from her sessions...
Your plan sounds solid for starters, and all I can really offer is our own experience, so just take it for what it's worth... My Mom went through a whole thing after her tests at K Hospital and an operation she luckily had in San Francisco, and with all those results (plus the biopsy and markers we paid for ourselves after the surgery), we headed over to the MD Anderson Cancer Center in Washington, D.C. They actually recognized everything from the other doctors and recommended chemo, but they gave Mom the full rundown of options so she could choose—whether she wanted to stay at the hospital in D.C. during treatment, come into the city every single day, or just get it done at K Hospital (which is way closer to where we live). We ended up going with the last option because there was zero point in driving all the way to D.C. when the meds are exactly the same, and we were already driving her ourselves every day anyway since the infusion only takes about 20 minutes... staying in the hospital would've been overkill... But, they also told us at the Clinic that Mom is actually entitled to ambulance transport for her treatments! She started her chemo two months after the surgery, so maybe a week or two after we visited the Clinic. That’s basically the standard recovery window after an operation anyway. So yeah, there are plenty of ways to make this work, and I really don't think you'll have trouble getting everything organized... just hang in there and take care of yourself!