Resources and support for families dealing with cancer and serious illness

Jessica Booth35 said:Hey everyone,

I just signed up for this forum today... I was searching the web for info, support, advice, or even just a little bit of hope, and that’s how I found you guys...
Basically, my mom was diagnosed with breast cancer just under a year ago. They had to do a full mastectomy, but unfortunately, it had already spread to the nearby lymph nodes... so it was Stage III. She’s been through chemo and radiation. Then, at her checkup last month, her markers spiked, and after all the tests, it turns out the cancer has metastasized to her liver... She starts a new round of chemo this Thursday... Taxotere plus Xerox... I’ve looked into it, and people say Xerox is a "smart, solid drug"... but while I was researching, I stumbled onto some stuff I really didn't want to read... like those 5-year survival rates and things like that...
Trying to wrap my head around it all... since there isn't a cure and it's more about improving (and hopefully extending) quality of life, I came across Pfizer (but I've also heard about it online over the last year since Mom's diagnosis)...
I wanted to ask if anyone here has experience with Pfizer? Do you know if she can take it while she's on chemo, or should she wait until the cycle is over? (I don't know how many cycles she'll need yet—for now, the doctor said 10, which would be one full cycle)—and honestly, I’d be so grateful for any advice, experiences, or help you can give...
Thanks so much, everyone!
Hang in there,
Mary

Hey there, fellow fighters!

Dear Mary, regarding Pfizer,
My little girl (she's 4 now) was Stage IV with lung metastases when we first found out. She went through 8 rounds of chemo, 2 surgeries, a stem cell transplant, MIBG radiation, and the standard radiation too.
She's been in remission for 1.4 years now, and I truly believe she'll stay that way.
From the very start, I gave her Pfizer; for her age, one packet a day was enough. I’d mix the Pfizer into her bottle when she wasn't undergoing chemo and once she stopped vomiting. Sometimes, because of the Pfizer, her temperature would spike briefly, even up to 100°F. Along with that, we always used non-alcoholic propolis spray and propolis ointment for skin sores. As for whether it helped—I can't say for sure—but I do know she never got mouth sores, never had skin issues, other infections were much milder, and we almost always made it to our chemo appointments on time.
Thanks to my dad, who survived throat cancer with metastases (they gave him only a month to live when he was diagnosed!) and has been in remission for eight years now, he insisted that regardless of how the body is doing, we should strictly stick to non boiled goat milk, Aloe-gel, Broccoli, and beet juice. I also added echinacea drops and garlic mixed with fruit so she wouldn't taste it. Looking at her now, you'd never know she was ever sick.

People will probably jump all over me for saying this, but when it comes to energy healers and that kind of stuff, I've never actually heard of them helping anyone. I saw so many parents reaching for those options, but kids would usually get a tiny temporary boost and then a crash they just couldn't recover from.
Our hearts stayed with God, and we just prayed and left it in His hands.
🙂

Anonymous said:Angela Wright any updates on when that new General Motors drug might actually hit the market here in the States? Wasn't it supposed to be available by the start of this year?

My dad was actually offered some kind of cutting-edge vaccine that just cleared its trials. Honestly, we didn't even bother asking for the name because we turned it down right away.🤷
It would have cost about $1,100 a week.
From what I’ve been digging up globally, immunotherapy like DCVax(R) is the real deal. It’s currently the most advanced option out there, and it can triple life expectancy while having way fewer side effects than your standard chemo. This is likely the only breakthrough worth talking about since it's the only actual innovation in brain tumor treatment right now!

Greetings to my dear fellow fighters,
I was chatting today with a woman who’s been staying at the hospital right by her mother’s side, and she mentioned something about using wild cyclamen root. Apparently, there’s this elderly gentleman named Luke over in Mexico—just a kind soul, really—who provides these roots to be brewed as a tea or used as compresses on the affected area starting on the 21st day. I should clarify right away that this man isn't out here looking for a payday like so many others; he only asks for enough to cover the actual costs of gathering the roots. I'm going to try to dig up some more concrete details over the next few days, so I'll be sure to update you all. On a brighter note, my mom is doing wonderful. I truly believe that medicine from Cetinje she’s been taking for four months now is making a real difference. I've been reading through your posts about struggling with high blood sugar caused by corticosteroids—well, my mom’s sugar is sitting at 7, and that’s after she had a whole bowl of grapes earlier this evening...

Amy Hayes28 said:While digging through recent research, I stumbled upon DCVax(R) immunotherapy. It’s basically the cutting edge of what’s hitting the market right now—it can triple life expectancy while being way easier on the body than those brutal standard chemo rounds. Honestly, this is the only real breakthrough worth discussing when it comes to treating brain tumors!

Exactly. That's precisely what I was thinking, and vpavi actually brought it up after she spoke with a specialist from the Mayo Clinic back this summer.

Karen Fox36 said:Hey there, my fellow fighters,
I heard today from a woman staying at the hospital with her mom about using wild cyclamen root. Apparently, there’s this old guy named Luke over in Mexico who provides these roots to be brewed as tea or used as compresses on the affected area starting on day 21. Just to be clear, this guy isn't out for profit like everyone else; he only asks for enough to cover the costs of harvesting the roots. I’ll try to dig up some more concrete details in the next few days and let you all know. On a side note, my mom is doing great. I honestly think that remedy from Cetinje she’s been taking for four months is really helping. I see people here complaining about high blood sugar caused by corticosteroids; my mom’s sugar is at 7, and that was after she polished off a whole bowl of grapes last night....

Their blood sugar is largely being spiked by heavy doses of dexamethasone. I assume that isn't the case with your mother, or am I mistaken?
It's fantastic that her sugar levels are within the normal range.👍 Regarding that formula from Cetinje, we actually heard about it from someone in Townsville. That stuff practically brought him back from the dead. Sadly, it seems like after a year of remission, he suffered a relapse that just spiraled out of control way too fast. My mom tried it twice but gave up because she couldn't stomach it at all.

Hi everyone,

I have a question for the group. My mom is battling esophageal cancer; it’s been about three months since her diagnosis. She’s already spent two weeks in the hospital twice, and during one of those stays, she developed a blood clot in her right leg... She's home now, and we’re getting everything ready to send her to the Dr. Breuss retreat, but we've hit a major roadblock: she can't keep anything down. She’s struggling to eat and even harder to drink. Every time she tries to swallow something, she starts coughing so hard it feels like she’s almost "coughing up" whatever she just tried to eat. She also complains about this constant feeling of mucus stuck in her esophagus that she just can't clear. If anyone has any insight or personal experience with this, what can we do?

Amy Hayes28 said:My dad was actually offered one of those brand-new vaccines that just cleared trials, but we didn't bother asking for the name since we decided against it.🤷
It would have cost about $1,100 a week.
While I was doing some digging online, I came across immunotherapy using DCVax. It’s supposedly the cutting edge right now, potentially tripling life expectancy while being much easier on the body than standard chemo. As far as I can tell, this is really the only major breakthrough in brain tumor treatment worth looking into.

Actually, this is part of a whole new protocol for cancer treatment in general. We are heading to Mannheim the day after tomorrow to start the DCVax treatment. We're traveling tomorrow and staying for a week, so I'll be sure to check back in and let you all know how everything goes!

Elizabeth Gonzalez55 said:This is basically a whole new protocol for cancer treatment. We’re heading to Mannheim the day after tomorrow to start the DCVax. We travel tomorrow and stay for a week. I'll keep you guys posted on the results!

Good luck. Please share every single detail; we're all incredibly invested because this represents a total paradigm shift in how tumors are treated.

Elizabeth Gonzalez55 said:This is the new standard protocol for cancer treatment in general. We’re starting the DCVax treatment the day after tomorrow in Mannheim. We travel tomorrow and stay for a week. I'll update everyone on the results!

It isn't meant for every single type of cancer. Under its full name, DCVax(R)-Brain, it was strictly intended for treating malignant brain tumors, but it turns out it's yielding great results for prostate cancer and lung cancer too—we're talking about five different types of carcinoma total (I don't feel like digging up the other two right now).
The company behind it believes they can develop a therapy based on this foundation that could help with 75% of all cancers within the next few years! Regardless, this is the most optimistic outlook we've seen so far.
However, I was venting to a neurologist yesterday who unfortunately pointed out how it always goes with new drugs hitting the market: the industry makes a massive stink about them, only for time to prove otherwise, sadly! He also mentioned that for brain tumors, it really only shows significant results in stages I and II, and anything beyond that hasn't been thoroughly tested yet. Germany was actually the first to approve the therapy, and their results have been incredibly strong across the board. At the end of the day, the fact remains: it's the best option we've had so far.
If you don't mind me asking, why head over to Germany if it's possible to do this in the US? And what kind of price tag are we looking at in Germany?
Wishing you a safe trip and nothing but success!!

Hey there!!!
Elizabeth Gonzalez55, I’m rooting for you—wishing you nothing but the best on this journey and hoping the therapy works wonders (just like it did for me)👍👋
We’re all just sitting here, anxiously waiting for your return and seeing those results...
Not much going on with me, honestly—just in the middle of prepping for the 18th, which is basically D-Day for me.
Best, Grace Fowler

Grace Fowler said:Hello there!!!
Elizabeth Gonzalez55, I truly wish you a smooth journey ahead and hope that this therapy proves successful, much as mine did...👍👋
We are all waiting with bated breath for your return and the results....
As for me, nothing particularly noteworthy is happening, just the usual preparations for the 18th, which will be my big day...
Best, Grace

Hang in there. You are in my thoughts, and I am certain everything will turn out fine once the 18th passes... Kiss

Hi everyone!

My mom had surgery for stomach cancer a few weeks ago. Her recovery went smoothly, and she was scheduled to start chemotherapy in February. However, a CT scan performed a couple of days ago showed a hypodense area. I’m going to paste the report here—if anyone can help explain what this actually means, I would be so grateful (I’m a total novice at reading these things)!

Findings:

An abdominal CT was performed using 5 mm transverse slices, both natively and with contrast enhancement.

The contrast agent is evacuating from the gastric fundus in the form of a narrow, tubular track surrounded by a hypodense area, with an evident increase in absorption values in said region following I.V. administration of contrast.

Thank you all so much!

Jessica Booth35 said:Hey everyone,

I just signed up for this forum today... I was searching the web for info, help, advice, maybe even just a little hope, and ended up here...
Basically, my mom was diagnosed with breast cancer just under a year ago. They had to perform a mastectomy, but unfortunately, it spread to the nearby lymph nodes... which put her at Stage III. She’s already gone through chemo and radiation. Then, during a checkup about a month ago, her markers spiked, and after all the testing, they found out the cancer has metastasized to her liver... She starts a new round of chemo this Thursday—Taxotere combined with Xerox... I’ve been digging into it, and people say Xerox is a "smart, effective drug," but while researching, I stumbled onto some stuff I really wish I hadn't read... you know, things like "5-year survival rates" and all that grim stuff...
Trying to wrap my head around everything... since there isn't a "cure" per se, and it's more about improving—and hopefully extending—quality of life, I came across Pfizer (I've seen mentions of it online, and heard about it over the last year while Mom's been fighting)...
I wanted to ask if anyone here has experience with Pfizer? Specifically, do you know if she can take it while undergoing chemo, or should she wait until the cycle is over? (I'm not sure how many cycles she'll need yet; her doctor mentioned 10 sessions, which would be one full cycle)... and honestly, I'd be grateful for any advice, stories, or help you can offer...
Thanks so much, everyone!
Hang in there,
Mary

Hi there, and welcome. I dealt with Stage 3 breast cancer with lymph node metastasis myself. Thank God, it's been four years and no recurrence—fingers crossed it stays that way. I went through Taxotere and 25 radiation treatments. It was rough, but I made it through.
As for those survival stats and death rates—honestly, just skip them. Every single case is unique; even two identical diagnoses can end up totally differently. Let me give you an example of a lady I know who became a dear friend through this whole struggle (I think I've mentioned her here before).
She had breast cancer that wasn't caught until it had already spread to her bones and liver—so, pretty late. Doctors didn't give her much hope, but she refused to give up. After 12 rounds of chemo (Taxotere), everything retreated, but then it flared up in her brain. Radiation took care of that. Then she had recurrences in her liver, then back to the breast, then lymph nodes in her neck... it went on like that for four years. She powered through countless rounds of chemo—literally stayed on her feet the whole time, never even crawled into bed. And look at her now: she's alive and just as tough as the day we met. She's got one tiny scar on her liver and that's it, even though according to every statistic out there, she should have been gone a long time ago. So, please, don't look at the numbers. Just focus on helping your mom get through the treatments and keeping her spirits up. Be right there by her side, and I'm certain you'll beat this thing together. Sending love, hang in there!👍

Amy Hayes28 said:My dad was actually offered this brand-new vaccine that just finished its trials. We didn't catch the specific name since we decided against it at the time.🤷
It would have cost about $1,100 a week.
While searching online, I came across DCVax(R) immunotherapy. It’s one of the latest breakthroughs on the market and can potentially triple life expectancy, all while having fewer side effects than your typical chemo! This might be the only real option worth looking into, given how cutting-edge it is for brain tumor treatment.

Thanks! I've already sent out some emails because I want to know if this can be used after completing the standard routine—surgery, radiation, and Temozolomide. Does anyone know if major US medical centers keep patient tumor tissue samples on file? Since this therapy requires a sample, I'm wondering where they'd get it if her tumor has already been surgically removed. Also, how long does the treatment usually last?

Anonymous said:Does anyone know if clinical centers actually store patient tumor tissue samples? Because they need a sample for this, but if her tumor was already removed, where on earth would they get one from?

They definitely keep them, though I have no clue how long they hold onto them. We actually managed to get my mom’s samples through some "internal channels" because we had them sent over to the States for a specialist—her dad's cousin, a well-known neurologist.
I'm guessing if they aren't using stored tissue, they're likely performing stereotactic biopsy—basically drilling a tiny hole in the skull to snag a little piece of tissue, like they're conducting some high-stakes PhD research.

Angela Wright said:They’re being kept, though I have no idea for how long. We actually managed to get our hands on my mom's samples through some "inside connections," since we used to send them over to the States for a relative of hers—he's a well-known neurologist—to take a look.
I’m assuming they’re most likely using stereotactic methods (where they make a tiny little hole in the skull) to pull a small tissue sample, almost like they're working on a PhD thesis.

I just got an answer back, and apparently, people who have already undergone surgery and therapy aren't eligible because they claim a sample is supposedly taken during the actual operation??? That sounds absolutely UNBELIEVABLE!!! Hey Elizabeth Gonzalez55 and Amy Hayes28, were you guys offered this even though you had surgeries and treatments beforehand?

Anonymous said:I just got an answer, and apparently, they can't include anyone who's already had surgery or prior therapy because they supposedly take samples during the operation??? That sounds ABSOLUTELY INSANE!!! So, Elizabeth Gonzalez55 and Amy Hayes28, were you guys actually offered this if you'd already gone through surgery and treatments?

😲That is just brutal.😢 Where did you hear that?
Look,🤔 my guess is it's simply because the trials aren't fully wrapped up yet. Everyone who "gets" the drug counts toward the study quota, and for the data to actually mean anything, patients can't have undergone other types of treatment. If they had, the final results would be a mess because you wouldn't know what actually worked... I'm just speculating here.🤷

Angela Wright said:😲That sounds absolutely brutal.😢 Where on earth did you hear that?
Maybe🤔 it just has to do with the fact that the clinical trials aren't totally wrapped up yet. Everyone who "gets" the drug is part of the test group, and for the results to actually be valid, patients can't have undergone other treatments beforehand—otherwise, they won't know what actually worked. Just my two cents, I'm honestly just guessing here.🤷

I'll send you a private message.
....

Look at this, my dear Angela, can you believe this? 😢

Anonymous said:I'll send you a DM
....

Look, Angela Wright, take a look at this. 😢

If you look right here, it states they are currently in Phase 2 clinical trials (there are four stages total, though some consider the first one purely preclinical). It honestly seems like that’s the bottleneck—they haven't reached the stage where they test if this can actually help patients already undergoing "standard" treatment, or how it might interact with existing protocols. It sounds discriminatory, almost idiotic, considering there's nothing left to lose when you're fighting glioblastoma, but that's how these protocols work. At the end of the day, there is massive money moving through these channels, and plenty of powerful people have skin in the game.

Hey everyone!!!!!!!!!!
I’m reading this and I honestly can't believe it—though, I guess I should have expected it. For years now, I’ve had this feeling that the second you get hit with a diagnosis, you immediately start tilting at windmills...😠
I just really hope God gives us all the strength to hang in there through these brutal times and, more importantly, helps us keep our sanity intact..
Best, Dan Hold