Angela Wright said:Give me some more details. I'm going to check with someone who knows for certain if this is actually worth anything.
Look, honestly, I don't know much else beyond the fact that it's in Cleveland and there's a chance it's an experimental facility—specializing in intestinal issues—and apparently some big-name gastroenterologist works there..
I tried Googling every way possible, but absolutely nothing comes up. All I found was some Mayo Clinic in Cleveland, and even then, I'm not entirely sure if that's the right place..
That’s why I’m asking here; maybe someone has heard more about it.. My dad told his friend who mentioned this to look into it a bit deeper if he could, so now we're just waiting..
James Patel79 7 years?? Wow. Do you realize how much strength you have inside you without even noticing it?? Don't let up now, just like you haven't until this point... it looks to me like you have an incredibly resilient psyche if you don't even need an alternative treatment yet. It's obvious you're a strong person, a real fighter.. and the strongest ones get the most exhausted, but they always pick themselves up and keep moving forward!!
I am wishing you all the strength in the world for what's ahead, as well as to everyone else out there fighting their own battles..
inra, I am so incredibly sorry. I’m praying to God for some kind of miracle here... is he still taking that beta-glucan or anything else for his immune system?
I asked him today if he was feeling any side effects—you know, nausea, loss of appetite... and he just laughs and says he feels nothing. Well, clearly, there is no appetite.
And yeah, I’ve noticed he’s scaled back his responsibilities quite a bit. He spends most of his time resting at home, maybe heading out for a little walk on the hills in the afternoon. He handles the essentials, but I do everything else. Still, I’m relieved he finally understands that he actually *has* to rest..
Honestly, I don't even know. All things considered, it's a miracle how much he's able to take.
He mentioned today that he heard rumors about a new hospital opening up in Salzburg—he wasn't sure if it's experimental or what, but apparently, it specializes in intestinal issues. Does anyone know anything about this?? Angela Wright, maybe you've heard something??
Amanda Anderson87 said:Evelina, unfortunately, we all know exactly what you're going through right now. Sending you guys so much strength during this fight. 🙂
A little update on our situation. After almost a two-month break due to kidney failure, Dad started back on the xeloda therapy. It’s probably the only thing that makes sense given the metastases and his overall condition. But even this time, it wasn't a long-lasting victory because after just seven days, his kidneys started failing him again. This time, when we got to the ER, they didn't even bother asking if we wanted him admitted; they just moved him straight to the GI intensive care unit. He spent three days there without getting out of bed, barely eating, just lying there naked watching people die around him. Since he isn't receiving any treatment that can't be managed at home, we brought him back.
Basically, we're managing the intense pain—which was part of the reason he was hospitalized—with Voltaren injections. For most of the day, Dad is pain-free and completely present 😍 walking around a bit, having a good appetite, we talk, we laugh. He's even planning to go fishing with my husband one day. 😍
While he was in the hospital, they did an ultrasound that showed necrosis in the liver and a new tumor the size of a hand on the peritoneum. He isn't sure if he wants to continue with the xeloda anymore; before the first cycle, he didn't have any pain, but during the second cycle, the pain became unbearable. Given how the tumor is growing, the drug doesn't seem to be doing anything, and he sees no point in continuing this torture. I honestly don't know what to think. 🙂
So, that's where things stand. We have a follow-up appointment with the oncologist next week, so we'll see.
Carl Kern66 how are things looking on your end? How much xeloda was he prescribed? How long is the cycle? Is that the number of days in a row he has to take the pills, then a break, then the next cycle, or what? We started the xeloda tablets yesterday just to maintain his condition... god, that sounds so pathetic.
How is it going with you? What are the doctors saying? Are you still tapering off and preparing for surgery, or...?
In the meantime, my dad has been knocked sideways by two different colds, even though he did manage to push through his chemo sessions.. The doctor suggested—well, he’ll be officially proposing at the tumor board meeting—that we transition to maintenance at home using oral tablets, combined with an Avastin injection every two weeks.. The CT scan shows a slight regression, but honestly, the metastases haven't shrunk much since the last scan, just a tiny bit. Now I'm sitting here worrying: why move to maintenance with pills? If they're stopping chemo at cycle 8 out of 12, why on earth aren't they pushing him to the end to shrink the tumors as much as possible? Do they just have zero hope that enough shrinkage will occur to make surgery an option? That was my entire hope—either surgery or maybe frequency ablation if things shrink enough. I don't get it. I can't talk to the doctor until they finalize the decision at the board meeting..
As for Dad, he’s getting more exhausted by the day. He still functions normally during the first half of the day, but by the afternoon, he retreats to his room and I can see him crashing mentally. He looks like he's just done with all of this; he actually told me he wanted to give up on treatment entirely..
So, this is where we stand. Hoping tomorrow is a better day..
How are you all doing, and how are your loved ones??
feralsurfer72, please accept my deepest condolences... you really moved me to tears. I truly hope you find some peace in your heart and that these incredibly difficult days pass by as quickly as possible.. 😘
Hello everyone... I am deeply saddened to hear that your loved ones are struggling. I’m wishing you all so much strength as you navigate this fight.. My dad went in for a CT scan today—just a follow-up—so we are currently waiting on the results. He still has four rounds of chemo left before he undergoes another round of testing..
If only there were some kind of magic formula to find peace of mind during moments like these...... 🙂
Amanda Anderson87 said:He’s already taking beta glucan, but it isn’t doing anything for his appetite. It works wonders for immunity, though—we saw that firsthand recently when Mom came down with a cold and he stayed perfectly fine. Usually, he's incredibly sensitive; if a neighbor even sneezes, he catches whatever they have.
Basically, every single mealtime is an absolute battleground. We are beyond frustrated at this point.
Where can I find elecampane? I might give that a shot.
And thanks 😍
You can grab elecampane at the Whole Foods over in Westgate... I really hope things start looking up soon. We find all sorts of stuff for him at that health food store. We’ve basically dedicated an entire cabinet to these supplements just so we can sneak them into his food. He refuses to eat most things otherwise. For example, we'll make cheese pastries with flaxseed oil and turmeric... he’ll polish those off like they're Oreos, but if I try to use flaxseed oil in a regular meal, he won't even go near it.
For now, we're getting lucky—he isn't needing any anti-nausea meds and seems okay. I know it's easy for me to act like I have it all figured out since we're still managing, but the real question is how much longer we can keep this up.
Carl Kern66 I don't know what kind of supplements you all swear by, but my dad has been taking beta-glucan, and his appetite is through the roof—honestly, more than I've ever seen. Apparently, this beta-glucan stuff is a powerhouse for the immune system; it supposedly prevents cancer cells from latching onto vessel walls and surviving... or something like that. I can't explain the science perfectly, but it works. It kicks the appetite into overdrive, too. I actually started taking it myself once when he did, and I could barely stop eating. As for ginger, I truly believe it’s incredible for nausea. We toss a little bit into almost every cooked meal we make. It’s not like the nausea completely vanishes, but as he says—there's nothing to worry about. We also use licorice root; he even chews on it constantly, and it’s great for settling the stomach.
A close friend of mine was diagnosed with stomach cancer... they had to perform surgery to remove her entire stomach... and according to her doctor, she caught it "just in time." She lives out of state, and I honestly never imagined how difficult it would be to talk about this disease... I try to stay optimistic all the time, but I think I'm being too "transparent"... so I don't really know the specifics... All I know is that I am absolutely devastated. When she told me tonight that the cancer has metastasized to her bones and she’s starting a new round of chemo and radiation, I just broke down. ...she started feeling pain in her back...😢😢😢😢 and she's been complaining about how intense it is for days now... I was terrified to hear the results of the bone scan.
Is there any way the therapy can help? Is there actually hope to stop this from getting worse?😢
Angela Wright🙂 will surely chime in with some comforting words... but unfortunately, nobody here can tell you which way this is going to go. Even though that's the first thing we all want to ask, there's no answer. It depends on so many variables. Right now, you can just be there for support. Find the strength to find some genuine hope within yourself, because that is the only way you can truly help her. Cry when you're alone, but when you're with her, be as solid as a rock. Have faith. I keep telling myself—miracles do happen, don't they!?!
wiredbison14 said:Hello everyone. My son (21 years old) was diagnosed with a malignant testicular tumor. He finished chemo, and things look good right now. However, we’ve hit a bit of a crossroads regarding his first follow-up scan. Before the chemo started, he had a CT scan, and now the doctor has ordered another CT. But when we went to schedule it, the technician on duty looked genuinely concerned and advised us to go for an MRI instead—he mentioned that for younger patients, an MRI is actually the standard practice at their facility. After looking into both CT and MRI, my son and I feel much more comfortable with the MRI option since there's no radiation involved and no risk of secondary cancer issues. I’m looking for advice here: can I refuse the CT and opt for the MRI, and in your opinion, which one is the better choice?
Hi everyone.
wiredbison14 maybe the reason they want a CT is because he already had one, so they can accurately track any changes... basically, comparing this scan directly to the previous one. Another thing: we were told how vital it is to use the exact same imaging center as before, because different facilities can produce varying results. And honestly, if an MRI doesn't involve radiation, just get it done for your own peace of mind alongside the CT if you have to...
edit: It’s not "maybe"—it is definitely the reason, and your doctor will confirm that once you see them. We actually wanted an MRI for our first follow-up along with a PET/CT, but our specialist explained why it didn't make sense. We even tried to push for the MRI, which is incredibly difficult because doctors are very reluctant to write those specific referrals, but eventually, we backed down because the doctor's reasoning was sound.
copperbison4 what are you even talking about? My doctor specifically told me to stick to fresh juices made in a juicer, and that they should be mostly vegetables with just a little fruit added—purely to balance out the taste and smell..
He drinks a massive pint of that stuff every single day, and he always has a plate sitting right next to him piled high with sliced fruit, veggies, and all sorts of grains and seeds to snack on..
I don't know, but as long as his blood work comes back perfect, I'm sticking to what we're doing.🤷
It was the exact same story for us. Once we got the diagnosis—metastatic colon cancer—we immediately switched to a super light diet. But while we were just sitting there waiting for chemo to start, things actually took a turn for the worse; markers shot up. Then, the doctor gave us the same advice he gives everyone: don't mess with the diet too much because he needs the patient to have actual strength to survive the treatment. So now, we aren't being restrictive about what we eat; we just stopped overusing heavy spices like we used to. We use high-quality extra virgin olive oil in salads instead of the cheap store-bought stuff, and we make sure every single meal is packed with natural ingredients sourced from Whole Foods... Every single day is loaded with fresh fruit and vegetables. Honestly, this is how everyone should be eating anyway; it’s not rocket science...
Rachel Wood27, my dad started out with liver metastases that were even larger than your father's. The biggest one was something like ten times the size, another was slightly smaller, and the third was about 2 cm... and all of them had heavily involved the entire liver... Thank God, they are shrinking. We’ve finished six cycles and have six more to go. Time is flying by; we’re already halfway through, and honestly, all I can think about is what happens after this is all over...
And what is the actual difference between microcellular and adenocarcinoma? Ours is adenocarcinoma...
Rachel Wood27 said:We had our check-up today, and the doctor is actually happy—the metastases in the liver are receding, and she wasn't even expecting much improvement regarding the bones.
Chemo starts back up in a week. Three more cycles of PE, then another follow-up.
Hang in there, my fellow fighters. I'm pulling for all of you!
But what does "liver metastases are receding" actually mean in plain English? Are they just trying to blast everything away with chemo, or is there an actual chance at surgery if things shrink enough?
Angela Wright thanks, and thank God he grabbed them right away and downed two packs immediately... even though he’s only supposed to have one a day. And what else isn't allowed? He can't be mixing these with his other meds either. 🙂
feralsurfer72 I know exactly how you feel. I was just reading about this myself and ended up in tears.
I've actually put together a list of questions for the oncologist for our appointment this Thursday. There's just so much I want to ask, but honestly, I'm terrified of finding out too much.
As for the answers to those questions, I don't have them. All I can do is offer support. 😘
redfox81 I know it isn't easy. It’s incredibly hard to dig up any sense of hope when you’ve already lived through certain realities. I went through this exact thing recently when I found out my dad had metastases. That single word—metastases—felt like the beginning of the end, and I just couldn't find a way out of that darkness. I’d tell my father one thing, while my mind was screaming something completely different. But once the initial shock wears off, you start fighting. Every little win feels like a victory sent from above. It doesn't have to be some massive milestone; even just seeing him have an appetite or getting a decent blood count before chemo keeps us going. We're constantly looking into treatment options abroad, too. We fight every single day, and honestly, my faith is what's keeping me upright. I believe in God, and that's where I find my solace... and look, miracles really do happen, you know? 😉
One question though—is it safe to use Avemar alongside beta-glucan and native propolis? He's been on the beta-glucan and native propolis since the start, and now his doctor suggested Avemar, but my dad didn't think to ask if they could all be taken together!
I’m glad to hear that, and please, don't lose hope. Honestly, I feel just as lost as anyone else sometimes, but I managed to dig up some optimism and I am sticking to it... anyway, things on your end seem to be heading in the right direction despite those initial hurdles. 🙂I just realized you posted those lab results in the thread above.. sorry about that..
Hey, has anyone else ever realized that some of our parents probably know each other from hanging out in hospital waiting rooms!?
redfox81 You're certainly providing quite the "support" for her..
feralsurfer72, I know it might not bring much comfort right now, but honestly, my dad's markers are sitting at over 500, and his CA 19-9 is north of 300... (I'm actually getting chills just typing this)
Rachel Wood27, did they get the CT scan results back yet?
Angela Wright, thanks again for the reply. We actually had a direct run-in with some incompetence at the local medical center ourselves, but this time we came prepared. We went in armed with questions from the jump, and we actually trust our doctor. My only issue is that I can't badger him too often—I'm terrified of pushing him too far and triggering a backlash. For now, we’re satisfied with how they’re treating my dad and we know he’s getting the best care possible, though of course, I'm constantly coming up with more questions...
Hey everyone... how’s it going? How are your loved ones holding up?
Angela Wright I was digging through this old thread and read everything you wrote about your mom. I had absolutely no idea—I am so incredibly sorry. Honestly, I don't think I've ever encountered such a group of brave people in one single place...
Does anyone here actually know what mucinous adenocarcinoma means? Specifically, I have a few questions where Google just keeps giving me contradictory answers...
Is this the type of cancer that grows aggressively? Does it tend to metastasize quickly, or is it a slower process? And based on the statistics, how does it typically respond to treatment?
One more thing—why is it that patients at MD Anderson aren't being offered radiofrequency ablation if they supposedly perform it and even list it as a service?!
feralsurfer72 said:I’m just as lost as you are. My dad’s been stuck in the hospital for ten days now. He went through a stretch where he wouldn't touch food or water, but he's finally eating again. They still haven't pinpointed exactly where the primary tumor is—we're still waiting on the actual results. The doctor mentioned today that they might need to run an MRI. I honestly thought a CT scan would give us more information than an MRI. 🤷
Vomiting blood is one of the classic symptoms of stomach cancer... though, for all I know, it could be some other organ entirely. As for the MRI, from what I understand, it picks up things on the bones that a CT scan misses. They told us we actually have to specifically request head imaging when he goes in for his MRI.
I really hope things start looking up for your dad. I hope he regains his strength soon so he can get started on treatment.