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Support resources for families dealing with cancer and other serious illnesses

Started by Angela Wright · · 👁 7 views · 1.2K replies

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Participants Angela Wrightmelloworca6Kimberly Cox58vividsailor7crimsongull20wearytrucker22Jamie Chaseneoncrane83slysurfer14Roger TaylorNancy Leevelvetmoose9Amy Torres4Chris Howard92Frank Johnson4Linda Ortiz49nimblepanther14feraldrifter6amberridge21Kevin Bishop10Charles Williams13coppermason13restlessowl3Dana Thomas6 …
Nancy Lee Nancy Lee Active Member
64 messages
joined Feb 2014
#101 ·
My dad was prescribed Pfizer for his chemo at home. He’ll be taking 4.5mg, four times a day, for five days. I guess I'm just wondering if anyone here has dealt with them before? Also, something else is bugging me. He started taking black walnut oil about eight days ago, and he was supposed to finish a full 21-day course. Now I'm stuck thinking—should he stop taking it while he's on the chemo so it doesn't mess with the treatment? But then again, if he stops now and tries to start back up after the chemo is over, I don't know if it'll even work the same way.
Dana Thomas6 Dana Thomas6 Newcomer
7 messages
joined Dec 2010
#102 ·
Hi everyone,

Has anyone heard anything about Ondansetron 8 mg? It’s the medication used to help with nausea during chemo. If you happen to know where I can get my hands on some, or if you have an extra box lying around from a relative or friend that isn't being used, please let me know—I am more than willing to buy it. My grandmother is currently battling cancer, and I was only able to track down one single box over in Santa Barbara. I've been calling everywhere across the US, but it seems like this specific brand is impossible to find right now. It helps her so much, but apparently, production has stopped. I'm just holding onto hope that maybe someone here might have some luck. The generic Zofran just doesn't seem to work for her. We're based in Washington, D.C., and honestly, every single day counts for us. Any help would mean the world.

I hope I'm posting this in the right place. If not, please feel free to move this thread...
velvetmoose9 velvetmoose9 Active Member
163 messages
joined Apr 2020
#103 ·
Dana Thomas6 said:Hey everyone,

Has anyone here actually heard anything about this medication? So, I’ve been thinking about Ondansetron 8 mg lately. It's one of those things you don't really give much thought to until you actually need it, right? It’s funny how we just go through life assuming everything is fine, and then suddenly you're dealing with some nasty nausea and you realize how much you rely on certain meds just to stay functional. I remember this one time back when I was staying in San Francisco, feeling absolutely miserable, and having that stuff on hand felt like a literal lifesaver. It's a weirdly specific kind of relief, if that makes sense. Anyway, just a little observation on the 8 mg dose—it's definitely a heavy hitter when things get rough.Does anyone happen to have some Zofran lying around? I’m looking for the stuff used to fight off that nasty chemo nausea. If you have an extra box from a relative or a friend who doesn't need it anymore, please let me know—I am more than willing to buy it off you. My grandmother is currently going through treatment for a tumor, and honestly, this is the only thing that really helps her feel human again. I managed to track down just one single box at a pharmacy in Santa Barbara, but since then, it’s been a total nightmare. I’ve been calling everywhere across the country, but it’s like the medicine has vanished off the face of the earth. Apparently, production has stalled, but I’m still holding out hope that I might find someone here who has a stash they aren't using. Any leads would mean the world to us. Replacement options. Zofran It’s just not working for her. I’m living here in Washington, D.C., and honestly, every single day feels like a high-stakes game to us. We really need some help navigating this.

I hope I’ve landed in the right spot here; if I’m totally off base, just go ahead and move my post to where it belongs...

Zofran i Ondansetron On paper, they’re basically identical since they both rely on the exact same active ingredient—Ondansetron.

Who exactly decided that was the case, and what kind of symptoms or red flags were they actually looking at to come to that conclusion about Grandma?
So, Zofran just isn't doing the trick for you?
So, regarding Ondansetron—if she hasn't given it a shot yet, honestly, how can anyone say for sure it’ll work? It’s one of those things where you just have to try it and see. Everyone reacts differently to meds, so while it's usually a lifesaver for nausea, there's no magic guarantee in medicine. But if she's struggling, it's definitely worth having on hand.

Honestly, Ondansetron is such a lifesaver when it comes to keeping nausea and vomiting at bay. It’s incredibly effective at cutting down those symptoms, especially when you're dealing with the fallout from chemo—though, fair warning, it doesn't hit the mark quite the same way for every single type of chemo drug out there. It’s definitely one of those heavy hitters in the toolkit, even if its performance can vary depending on what else is being pumped into your system.
Look, let's be real—it’s not some kind of magic bullet. It doesn't work the same way for everyone. You'll see cases where one person gets a massive boost from it, while someone else barely feels a thing. I’ve even heard stories about how it can be incredibly effective during one round of treatment, only to totally flake out on the next cycle, and then suddenly start working like a charm again. The bottom line is that it’s pretty much impossible to say for sure exactly how much it’s going to help any specific patient. It’s just one of those unpredictable things.
One of the trickiest parts—and I mean really, truly tricky—is trying to figure out exactly how much lead time you need before hitting someone with chemo. It’s not like there's a simple rulebook for this, especially when you're dealing with older patients. You've got to account for a lot of moving parts: their metabolism tends to slow down significantly as they age, their digestion isn't what it used to be, and then you have to factor in all those other underlying health issues and the cocktail of daily medications they're already juggling. It makes calculating that perfect window of time before the treatment starts a bit of a moving target.

I think I'll probably reach out to my doctors again just to pick their brains a bit more on this whole thing—specifically regarding whether Ondansetron or Zofran would be the better way to go.
Kevin Bishop10 Kevin Bishop10 Member
43 messages
joined Apr 2016
#104 ·
Adenocarcinoma of Unknown Primary

I’m checking back in following a follow-up with my oncologist.

On two separate occasions, lymph nodes were removed from my inguinal region (groin) and along the iliac vessels (retroperitoneum). Pathology has confirmed these are metastatic due to malignancy.

My oncologist noted that while it’s possible everything malignant was successfully excised, there remains a chance that something else is lurking somewhere or that the primary tumor remains undetected. I have blood work and tumor marker testing scheduled for tomorrow, as the last round was five months ago. If the blood counts look good and the tumor markers return to normal levels, I am slated to begin "Taxol/Carboplatin" therapy this coming Tuesday.

If anyone here has experience with this specific combination, I would appreciate knowing how it is tolerated and what the most frequent side effects tend to be.

Best regards from Boston
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#105 ·
Kevin Bishop10
We're talking about a combination therapy here—Taxol paired with Carboplatin. http://www.cancer.gov/cancertopics/d...BOPLATIN-TAXOL
That link leads straight to an info page. Most people deal with nausea or digestive issues, but honestly, those side effects are usually manageable.

You absolutely need to look at this: http://www.chemotherapyadvisor.com/o...rticle/218123/
This outlines treatment protocols across seven different lines for occult adenocarcinomas (that's the first one listed in the table). Following this means you’d be getting what they typically suggest here in the States, though it seems to be one of the older approaches. However, those last two options highlighted in the gray area are the most recent updates. I’d highly recommend printing this out and handing it to your doctor to see if they’d consider it; based on the intro, these newer methods clearly show better results. I've included the references and study links below so you have the data to back you up, especially since you have every right to demand the best available care.
For instance, the CapeOx regimen is much easier to stomach because the cycle repeats every three weeks. You take the Xeloda orally twice a day—which most people tolerate quite well—and then you just deal with the Oxaliplatin for that one single day every three weeks.
Nancy Lee Nancy Lee Active Member
64 messages
joined Feb 2014
#106 ·
Angela Wright, I’d love to get your take on my last post. And I messed up—it wasn't oil, it was actually black walnut tincture.
One more thing, how do you even sign up for the Curiosity Foundation forum? I can't seem to make it work no matter what I try.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#107 ·
Nancy Lee said:Angela Wright, please let me know what you think about my last post. Also, I messed up—it wasn't oil, it was black walnut tincture.
One more thing, how do I sign up for the Zanovidan association forum? I can't seem to figure it out.

I’m not going to weigh in on the walnut stuff because we're talking about alternative remedies here, and there just isn't any solid evidence to lean on. What I do know about walnuts is that in the parts of the country where they grow, nothing else ever seems to take root because they pump toxins into the soil. Personally, I wouldn't go experimenting with that.
As for the forum, that association basically doesn't exist anymore, so the site will probably be taken down soon. That's likely why it's stuck in read-only mode.
Kevin Bishop10 Kevin Bishop10 Member
43 messages
joined Apr 2016
#108 ·
Angela Wright said:Kevin Bishop10
We are talking about a combination of two drugs here: Taxol and Carboplatin. The most frequent side effects tend to be nausea and digestive issues, though one can certainly get used to those.

That said, those last two options in the gray area are the newest ones. I would suggest you print this out and hand it to your doctor so they can evaluate if it's worth trying.
For instance, this CapeOx regimen is much easier to endure because the cycle repeats every three weeks; Xeloda is taken orally twice a day and most people tolerate it quite well, while the Oxaliplatin is just a single tough day every three weeks.

Angela, thanks for the response.

I've printed it out and will show the oncologist tomorrow. I just hope there's a wide enough spectrum of medications available in Boston. If not, then so be it...

Does anyone have recommendations on how to reduce nausea and vomiting (preferably natural methods, or medication if absolutely necessary) for this specific drug combination?

Regarding digestive issues—are we talking constipation or...?

I noticed you're an admin, but you're clearly more than that. So conscientious, quick, and knowledgeable about everything... You deserve at least a chocolate bar! Greetings from Boston.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#109 ·
Kevin Bishop10 said:Angela Wright, thanks for getting back to me.

I’ve printed this out to go over with my oncologist tomorrow. I just hope they have a wide enough selection of drugs available here in Boston. If they don't, well, we work with what we've got...

Does anyone have tips on managing nausea and vomiting—ideally natural remedies, though I'll take meds if necessary—specifically for this drug cocktail?

Any digestive issues to watch for, like constipation or anything else?

I noticed you're an admin, but honestly, you're much more than that. You're so diligent, quick to respond, and clearly know your stuff... You deserve at least a chocolate bar! Best regards from Boston.

I can't speak for Canada, but here in the States, these are standard on hospital formularies, so there's no reason they wouldn't be available to you too.
The doctor will prescribe something for the nausea. People deal with it constantly. Some swear by Coca-Cola, others find relief with air-popped popcorn, or maybe some flaxseed emulsion... Most often, it actually turns into diarrhea. Don't stress about it before it happens. There are people who sail through this without any side effects at all.

I'm not an admin; I just started this thread and kept it going because sharing what I've learned helps give some purpose to the agony my mother and I went through.
Kevin Bishop10 Kevin Bishop10 Member
43 messages
joined Apr 2016
#110 ·
Angela Wright said:I can't speak for Canada, but here in the States, they show up on hospital charts all the time; I don't see why they wouldn't be available over there either.
You should get anti-nausea meds from the doctor. People try all sorts of things to cope. Some swear by Coca-Cola, some by popcorn popped in hot air, others by flaxseed emulsions... Most often, it just turns out to be diarrhea. Don't stress about it beforehand. There are people who go through everything without any symptoms at all.

I am not an administrator; I simply started this thread and am participating because sharing what I've learned gives more purpose to the agony my mother and I have endured.

Thanks for the advice.

You’re lucky you don't know how this country works. Even the news reports that hospitals are facing shortages of various chemotherapeutic agents. If I don't receive those anti-nausea medications, I won't be surprised at all. In America, anything is possible.

I will attempt to follow the advice: not to worry prematurely. And I will return (if I am able) once therapy begins to ask for guidance and share my experiences (if they might be of use to anyone).

Your true character shows now: despite everything you've lived through, you still find the strength to help others.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#111 ·
Look, I'm sure things aren't exactly sunshine and rainbows right now, but let's be real—you don't always see this much funding poured into things just because they're legally mandated. We're talking about treatment protocols that are standard practice worldwide, and the medical establishment here in Canada sticks to them religiously. Even though the US is dealing with its own massive financial hurdles, our medical care and the sheer expertise of our doctors have always been top-tier. Honestly, if we had half the budget other places have, we'd be performing actual miracles.
Don't bother posting unless you actually need some advice. I don't know the first thing about this stuff, but since there are still plenty of brilliant, kind people hanging around here, you'll likely get an answer or at least a pointer toward where to find one.
ruggedmarlin2 ruggedmarlin2 Member
13 messages
joined Jun 2012
#112 ·
Hello,

I honestly never thought I’d be the one posting here, but life has a way of forcing your hand... My mother was hit out of nowhere by these strange pelvic pains and abdominal fluid buildup—everything pointed toward the worst-case scenario. After some terrible ovarian markers and a battery of tests, she underwent surgery just a week ago, and the news is devastating... 😢, everything in her abdomen is involved. They removed as much as they possibly could, but it wasn't enough... essentially, the ovaries, the uterus, and part of the bowel are gone. Apparently, the bladder seems okay, but the cancer originated from the peritoneum and had been developing silently for years without a single symptom. She’s currently in the hospital, recovering slowly... and chemo is slated to begin in about a month. To be honest, the shock is overwhelming—I feel far too young to be navigating this kind of reality... It’s hard, just incredibly hard... yet, somehow, I wake up every day clinging to a shred of new hope.
I would be so grateful if anyone who has walked a similar path could reach out, as I have several questions weighing on me.
1. What does a standard six-cycle chemotherapy regimen actually entail?
2. Are there any proven ways to strengthen her system during this recovery period?
3. Which supplemental aids—including alternative options—might help mitigate the side effects of chemo?
4. Nutrition... does anyone have specific dietary advice or recommendations?

Thank you so much for any insight you can provide.
Nancy Lee Nancy Lee Active Member
64 messages
joined Feb 2014
#113 ·
Angela Wright said:I wouldn't touch walnut, personally. It’s an alternative remedy, and there isn't really any solid evidence for it. From what I understand, they don't grow anything else in the areas where walnuts are planted because they leak toxins into the soil. I just wouldn't risk experimenting with it.
As for the association, it doesn't exist anymore. The site will probably go dark soon too, which is likely why everything is read-only now.

Wait, since when did the association stop existing? Seriously? We need groups like that more than ever, especially since they're so hard to find these days. This is getting ridiculous. Honestly, I can barely even look at this forum anymore. I just hope they haven't wiped everything out; there was so much useful info here. It’s a real shame the forum couldn't stay active somehow. People need places like this—somewhere to ask questions, vent, or actually learn something new. It’s just a waste.
Nancy Lee Nancy Lee Active Member
64 messages
joined Feb 2014
#114 ·
ruggedmarlin2 said:Hey,

I never thought I’d be posting on this thread, but here we are... my mom suddenly started having these weird pains in her pelvic area, fluid in her abdomen, and everything pointed toward the worst case scenario. After some bad ovarian markers and all the testing, she had surgery a week ago where they found out things are looking pretty grim. 😢, everything in her abdomen is affected; they took out whatever they could, but they couldn't get it all. So, ovaries, uterus, part of the bowel—they said the bladder looks okay. Apparently, it started from the peritoneum and had been developing for years without any symptoms. She’s in the hospital now, recovering slowly... chemo should start in about a month. I'm in total shock; I guess I'm still too young to be dealing with all of this. It’s hard, just really hard... but yeah... I wake up every day with some kind of new hope.
If anyone else is going through this or has been through something similar, please reach out, because I have a few questions.
1. What does 6 cycles of chemotherapy actually entail?
2. Is there anything proven that helps with strengthening during recovery?
3. Are there any supplements (even alternative ones) that help ease the side effects of chemo?
4. Diet... does anyone have advice or recommendations on what to eat?

Thanks so much for any answers.

There are others here who will probably give you better answers than I can, so I'll just send you a huge hug. I know how you feel because I'm going through something similar with my dad, and I know how tough it is—way too tough.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#115 ·
Nancy Lee said:Why did the association just vanish? Since when?! Organizations like that are absolutely vital, and honestly, they’re already too hard to find... It's all over the place! I can barely bring myself to read this forum anymore. I really hope everything hasn't been wiped out because there was such a massive amount of useful info there. It’s a real shame the forum didn't stay active somehow; people need spaces like this where they can ask questions, vent, or actually learn something new... Such a waste.

It’s because people only care about these associations when they need a helping hand; once their problem is solved, they disappear. For an organization to actually work, you need active members stepping up, not just a handful of people burning themselves out trying to fix every tragedy in the world. Because nobody bothered to show up for the mandatory annual meeting, the whole association collapsed. Unfortunately, until people change their mindset, things like this are always going to fail. I have no idea what's going to happen to the website.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#116 ·
Coco
Six cycles of chemo simply means she’ll undergo therapy at specific intervals, six times total.
Your mom needs to eat healthy—think light, nutritious meals, something like a Mediterranean diet. She should boost her immunity with vitamins and any proven complementary supplements you can find at a local pharmacy. As for the nausea from the treatment, the doctor will prescribe medications to help, like Zofran. If and when things get tough, come back here and we’ll share more tips. I already mentioned some of them in a previous post for Kevin Bishop10.
The most vital thing right now is to live your life and focus on the here and now. You can't predict the future or solve problems that haven't happened yet. When a problem arises, then you deal with it. You have to conserve your energy. Another crucial thing you need to accept and internalize is that this is primarily happening to your mother, and she is the one suffering the most. No matter how horrific you feel, you are just being caught in the wake of this. You absolutely cannot make things harder for her by letting her feel your fear, despair, or panic; doing so will only deepen her own pain, terror, and crushing sense of guilt. You have to be her rock and her support system, and you need to find somewhere else to vent those emotions away from her.
I won't lie to you—there are no easy days ahead. But people find a way to survive everything, and you will too. Hang in there and stay brave for your mother's sake. Show her she raised a daughter who knows how to handle whatever life throws at her. That will be her greatest relief and her biggest reward.
graniteorca42 graniteorca42 Member
18 messages
joined Sep 2012
#117 ·
Angela Wright said:I am certain things aren't perfect, but even then, you don't often see funding provided for everything mandated by law. We are talking about treatment protocols that are globally accepted, and the medical community in Canada adheres to them strictly. Regardless of how many financial struggles Canada faces, medical care and physician expertise have always remained high quality; if they had as little funding as they do elsewhere, everything would have collapsed. In fact, miracles happen here all the time.
Don't bother offering advice unless it's requested. I may not know half of what is going on, but since there are still dear and intelligent people visiting this forum, you will eventually receive an answer or at least some guidance on where to look.


Thank you for such an objective perspective. I have posted on this forum before; I am from Birmingham, and my mother has been undergoing treatment for two years now. I can say with absolute certainty that our doctors have performed nothing short of miracles with her so far. It is true that the state of the country is catastrophic and the healthcare system is drowning in debt, yet my mother has received seventeen different therapies without ever being short on medication. She has undergone every test without issue, received all her medical aids through the Foundation, and everything else. The attitude of the doctors toward us is so exceptional that I can hardly describe it; my mother's doctor cares for her so deeply that you get the impression she is her own daughter rather than just a physician (and I am not exaggerating). It is true, I know that occasionally certain medications are unavailable, but they only wait a maximum of ten days—I know this from speaking with other patients. Honestly, I repeat, I am amazed that this is even possible given the current state of the nation. Because of this, I believe everything will be fine in Boston or wherever she ends up. As you wisely noted in another post, one shouldn't waste energy worrying prematurely; instead, one must handle matters day by day. That was my "beginner's mistake" when we were first hit by this shock. Now, everything moves much more smoothly; I am settled in and providing excellent support to my mother. I wish everyone the strength to endure and win their battle.
Dana Thomas6 Dana Thomas6 Newcomer
7 messages
joined Dec 2010
#118 ·
velvetmoose9 said:Zofran and Ondantor technically have the exact same active ingredient (ONDANSETRON).

I'm curious—what specific signs or symptoms led to the conclusion regarding Grandma:
1. That Zofran isn't working for her?
2. And how can we be sure Ondantor will help if she hasn't tried it yet?

Ondansetron is an incredibly effective medication when it comes to preventing or reducing nausea and vomiting caused by things like chemotherapy (though its effectiveness can vary depending on the specific chemo drug being used).
Unfortunately, it’s not a magic bullet. It works better for some people than others. I've even heard of cases where it works wonders during one cycle, fails during the next, and then suddenly starts working again. The bottom line is that it's pretty tough to predict exactly how much relief any individual patient will get.
One tricky part is determining the right timing—how long before the chemotherapy session she should take it. This is especially hard to gauge with older patients, given that metabolism slows down, digestion changes, and there are often other health conditions or regular medications to consider.

If I were you, I’d definitely reach out to her doctors for more specifics regarding whether Ondantor or Zofran is the better way to go...

She finished one box of Ondantor (10 tablets) and felt like a whole new person! After that, we switched over to Zofran since it's so easy to find (we knew it was the same thing), but it just hasn't been nearly as effective. She's still feeling nauseous, so we've concluded that Ondantor really is the better fit for her, which is why we're trying to track it down.
Thanks so much for the insight; we'll definitely follow up with her medical team.
ruggedmarlin2 ruggedmarlin2 Member
13 messages
joined Jun 2012
#119 ·
Nancy Lee said:There are others here who might be able to give you more specific answers than I can—for now, I’m just sending a massive hug your way. I truly understand what you're going through; I’m navigating a very similar situation with my own father right now, and I know just how heavy this feels... it's incredibly difficult.

Thank you so much....sending one right back at you...🙂
ruggedmarlin2 ruggedmarlin2 Member
13 messages
joined Jun 2012
#120 ·
Angela Wright said:Coco
Six cycles of chemo essentially means she’ll undergo therapy six separate times at specific intervals.
Your mom needs to eat healthy—light meals, nothing too heavy, ideally sticking to a Mediterranean-style diet. It's also vital to boost her immunity with vitamins and any scientifically proven complementary supplements you can find at a reputable pharmacy. Regarding the nausea from the chemo, the doctors will provide medications to manage it—for instance, Zofran. If and when things get difficult, come back here and we’ll share more tips. I mentioned a few of them earlier in my post in the fifties section.
The most critical thing right now is to stabilize your own life and focus entirely on the present moment. You simply cannot predict the future or solve problems that haven't arrived yet. When a problem hits, then—and only then—do you deal with it. You have to conserve your energy. Another crucial point you must accept and internalize is that this is primarily happening to your mother, and she is the one suffering most. As terrible as you feel, you are ultimately an observer to this struggle. You absolutely cannot make things harder for her by letting her sense your fear, despair, or panic; doing so will only deepen her own pain, anxiety, and that crushing sense of guilt. You need to be her rock and her support system—find somewhere else to vent those emotions.
I won't lie to you; there aren't easy days ahead. But humans have a way of surviving just about anything, and you will too. Hang in there and stay strong for your mother's sake. Show her that she raised a daughter who knows how to face life's storms. To her, seeing that strength will be the greatest relief and reward of all.

Thanks so much for the response.🙂

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