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Support resources for families dealing with cancer and other serious illnesses

Started by Angela Wright · · 👁 8 views · 1.2K replies

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Participants Angela Wrightmelloworca6Kimberly Cox58vividsailor7crimsongull20wearytrucker22Jamie Chaseneoncrane83slysurfer14Roger TaylorNancy Leevelvetmoose9Amy Torres4Chris Howard92Frank Johnson4Linda Ortiz49nimblepanther14feraldrifter6amberridge21Kevin Bishop10Charles Williams13coppermason13restlessowl3Dana Thomas6 …
ruggedmarlin2 ruggedmarlin2 Member
13 messages
joined Jun 2012
#141 ·
vividsailor7 said:There is just too much ambiguity here—things that simply cannot be resolved through formulas alone.
I would strongly suggest seeking a second opinion at the Mayo Clinic.

It is far too early to draw any definitive conclusions about that—we’re talking about a lifelong trajectory, after all.

I’m sorry, but I didn't quite grasp what you meant by that. Could you clarify?
ruggedmarlin2 ruggedmarlin2 Member
13 messages
joined Jun 2012
#142 ·
Thanks for the response. I’m asking for a friend here—though my mother is already adamant that she won't touch those supplements if they turn out to be carcinogenic. We’re talking about a blended preparation involving B17 capsules and some kind of Shiitake mushroom... something along those lines. She's also curious about Beta-glucan and Graviola? Is it safe for her to start taking those right now? It’s been two weeks since her surgery, and if everything goes according to plan, chemo should begin in about another two weeks.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#143 ·
ruggedmarlin2 said:I didn't quite catch what you meant by that.

You really ought to steer clear of this kind of stuff from the day you're born until the day you die—basically, there's never a "right" time to indulge in it.
ruggedmarlin2 ruggedmarlin2 Member
13 messages
joined Jun 2012
#144 ·
dark mushrooms
ruggedmarlin2 ruggedmarlin2 Member
13 messages
joined Jun 2012
#145 ·
Angela Wright said:So, I suppose one should just avoid these kinds of things from birth until the grave—as if there’s ever actually a "right" time for anything, right?

We’re looking at a four-year-old girl who’s been bouncing around, full of life, and she hasn't even stepped foot in a doctor's office once... she’s essentially managing her own wellness. I suspect—regardless of what anyone else thinks—that there might be some merit to this approach, provided, of course, that everything has been properly vetted within standard American medical guidelines...
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#146 ·
Beta-glucan is an ingredient you can extract from mushrooms at a much more reasonable price point without sacrificing any of the concentration you'd find in high-end brands like Mykosan. It’s backed by solid clinical studies, too. Just make sure you're buying it exclusively from a pharmacy.
ruggedmarlin2 ruggedmarlin2 Member
13 messages
joined Jun 2012
#147 ·
Angela Wright said:Beta-glucan is an ingredient extracted from mushrooms—available at a much more reasonable price point while maintaining the exact same concentration as, say, the famous Mycosan. It’s a supplement backed by solid clinical studies. Just make sure you buy it exclusively from a pharmacy.


So, is this actually legit? She just got this new stuff in a bottle all the way from America, and apparently, it usually goes for about $233...

Does anyone here know if it's safe to start taking it right away? I heard the recommendation is two tablets a day on an empty stomach—am I getting that right? And how long should one take it before needing to step back and take a break?
Kevin Bishop10 Kevin Bishop10 Member
43 messages
joined Apr 2016
#148 ·
Angela Wright said:We are talking about treatment protocols that are globally accepted, and the medical community in Canada adheres to them. Regardless of how much financial trouble Canada might be facing, the quality of medical care and physician expertise has always been top-tier; if other places tried to do what we do with such limited funding, they’d collapse. Plus, miracles happen here too.
Feel free to post whenever you actually need advice. I don't know the first thing about this stuff, but there are plenty of dear and intelligent people lurking here, so you'll likely get an answer or at least a pointer toward where to find one.

I saw my oncologist today, and my chemotherapy has been pushed back to next week. My blood work and tumor marker results (CA 15-3, CA 19-9, CEA, and PSA) came in. The blood counts look fine, and the markers are within normal limits. For reasons unknown to me, however, the oncologist decided to change the therapy. He has now prescribed cisplatin along with another cytotoxic drug (I didn't catch the name), followed by radiation.

Is this an overly aggressive approach for metastases in the groin lymph nodes when there is no primary tumor present?

What kind of side effects should I expect from this chemo, and is there anything I can do to make it more tolerable?

Thanks in advance for any insight.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#149 ·
ruggedmarlin2, don't go making assumptions based on other people's anecdotes. You don't have the full medical history, and besides, not every tumor is built the same way biologically. There are women out there who have CIN3 and think they have cancer, refuse the necessary surgery, and then it clears up spontaneously—only for them to swear up and down that some grandmother's herbal tea was the miracle cure.
Furthermore, since cancer is categorized into numerous types based specifically on cellular structure, it is biologically impossible for a universal cure to exist now or ever. We have targeted therapies—essentially precision medicines—that act on specific cells. These are administered in strictly controlled doses, where the physician faces criminal liability if they mess up. So, we can't just sit here speculating that cyanide might not be "that bad." It is a proven poison, and people are ingesting it without any oversight. Cancer is a serious systemic disorder at the cellular level, primarily triggered by a compromised immune system and a loss of internal biological equilibrium. The goal is to strengthen that immunity; if toxins are required, they should be administered exclusively by a doctor under rigorous supervision and at exact dosages. Anything else is just playing in the dark, and it usually ends badly. Focus on your mom, her specific diagnosis, and her actual condition. Don't believe everything you hear or everything people claim worked for them. You need hard, written evidence: lab results from before and after, along with written guarantees and signed accountability ensuring that no one is being harmed.
If you head over to page 439, there's a discussion where I explained exactly how these mechanisms work. Read it, just so you don't fall for useless delusions.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#150 ·
Kevin Bishop10 said:I saw my oncologist today, and they pushed my chemo back to next week. My blood work and tumor markers (CA 15-3, CA 19-9, CEA, and PSA) came in. The blood counts look fine, and the markers are within range. For some reason I don't quite get, the doctor decided to switch up my treatment plan. Now he's prescribed cisplatin along with another chemo drug (I didn't catch the name), followed by radiation.

Is this kind of aggressive therapy overkill for metastases in the groin lymph nodes if there isn't a primary tumor present?

What kind of side effects am I looking at with this combo, and any tips on how to make it more bearable?

Thanks in advance for the help!

Since your markers are normal, it’s actually more likely they'll go with a milder chemo regimen. And seriously, how do you walk out of a doctor's office without asking these massive questions or writing down the name of the medication?! Look, man, forget about the side effects for a second—that’s the least of your worries right now, and you deal with that as it comes. You don't even fully grasp what you're dealing with or exactly how the treatment will play out yet. Focus on the big picture first!
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#151 ·
A fellow forum member recently sent me a link to this Facebook group. It’s a sobering look at how even people who consider themselves intellectuals can fall hook, line, and sinker for the smooth-talking rhetoric of extremists—and worse, how they might lack the common sense or basic decency to protect their own children from being subjected to a level of agony that wouldn't even be considered humane for an animal.
https://www.facebook.com/pages/Boran...ref=ts&fref=ts

This is exactly why you need more than just knowledge; you need actual judgment and the guts to stand up for what's right.
Rebecca Phillips25 Rebecca Phillips25 Newcomer
4 messages
joined Jul 2013
#152 ·
Angela Wright said:Rebecca Phillips25, you should send them a formal cease and desist letter. Honestly, it’s probably best if an attorney handles it, maybe adding a brief note about the legal penalties they face if they refuse to hand over your documentation. I know people who have done this and received their paperwork the very same day.
Regardless of how things play out, go there and stand your ground. Make a scene if you have to—threaten them with a lawsuit, the local news, or even calling the police. You have rights, and they can look up those rights in any legal guide; they are obligated to comply. Don't leave until you get exactly what you came for. They can't touch you for standing up for yourself.
Which hospital were you at, if you don't mind me asking?

The most critical thing right now is getting those samples, because your entire treatment plan depends on them.

Thanks for the advice.
I'll send you a private message letting you know which hospital it is. I'd rather not name them publicly just yet, at least not until I see how they react to my request for the medical records they're withholding and my demand to have the PHI results redone.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#153 ·
Rebecca Phillips25 said:Thanks for getting back to me.
I’ll shoot you a DM about which hospital we're talking about; I don't want to go public just yet, at least not until I see how they handle this situation regarding the medical records they're withholding and their demand that I redo the MRI.

Just do exactly what I suggested. Get a lawyer involved, then send a formal cease and desist notice directly to the clinic director's office. Let them figure out their internal drama; honestly, it’s probably cheaper for them to just cough up the cash than to fight this, especially now that their budgets are being slashed.😳
I know plenty of people who have taken this exact route, and it gets settled immediately every single time.
melloworca6 melloworca6 Regular
551 messages
joined May 2010
#154 ·
I’m asking you all one more time: read the rules. Stop posting about things that are clearly prohibited in the guidelines.

Maria Fisher46 said:To all members,

We are updating and clarifying the rule regarding discussions on alternative treatments (anything that falls outside of mainstream medicine):

The rule is being amended and expanded. Read it carefully because breaking it will result in sanctions.

On the Health and Child Health PDFs, it is strictly prohibited to directly or indirectly cast anything in a positive light (sharing personal experiences like, "I'm just sharing what worked for me, I'm not telling anyone else to do it") and/or to solicit positive testimonials ("I just want to know if this ever helped anyone") and/or to push or write affirmatively about:

a) any form of "treatment" that is not considered medical practice and which mainstream medicine deems life-threatening or dangerous to health (for example, mentioning MMS drops, colloidal silver/silver water, "Vitamin B17," or other toxins is not allowed), regardless of whether someone believes those methods helped them;

b) any form of "treatment" that is not considered medical practice, with the exception of herbal preparations, vitamins, minerals, and dietary supplements (for instance, discussing homeopathy, bioenergy, or bioresonance is not allowed), regardless of whether someone believes those methods helped them;

c) it is not permitted to directly or indirectly advise others to abandon a therapy prescribed by doctors according to standard medical protocols.

Discussing herbal preparations, vitamins, minerals, and dietary supplements is allowed, provided they are not toxic substances dangerous to life and health, and provided the posts do not directly or indirectly suggest acting contrary to the instructions of a doctor following professional standards.
ruggedmarlin2 ruggedmarlin2 Member
13 messages
joined Jun 2012
#155 ·
My apologies...

We are doing our absolute best to gather as much intelligence as possible from every available corner of the web regarding any potential supplements—anything that might offer even a modicum of support for strengthening the body before starting chemotherapy.
Jamie Chase Jamie Chase Member
20 messages
joined Jan 2015
#156 ·
Here it is. I am just going to copy and paste this, if only to remind everyone what we were actually discussing...

Jamie Chase said:She underwent surgery today. The doctor claims she tolerated the procedure well, though he noted that her overall condition remains far from ideal. Is anyone actually surprised?
The tumor had partially encroached upon the large intestine, an area they chose not to touch just yet. Their plan was to complete six rounds of chemotherapy before determining if a follow-up procedure was even feasible. They managed to excise most of the mass from the thorax—it appeared somewhat plate-like in structure. Additionally, one ovary was removed, though they couldn't reach the second one; apparently, it’s small enough that it doesn't pose an immediate threat. Before the surgery, they noted that her intestines appeared fused, and today, they confirmed that this condition is simply a consequence of the tumor.
I asked if getting a CT scan after surgery is actually worth it. He told me no, claiming they get the best possible view during the procedure itself. But is that even realistic? Is it truly possible to see everything clearly during a standard operation? I mean, it isn't like they’re just "lifting" everything up to inspect all the way down to the spine or the lungs, is it?

Angela Wright said:You probably won't be able to catch the afternoon broadcast of Dr. Oz, but you should definitely tune in for the evening rerun. He's discussing ovarian cancer—specifically why it’s such a nightmare to diagnose and the early symptoms that doctors often overlook. It's quite compelling.

I watched the episode, though unfortunately, I was far too late to catch it...

Angela Wright said:Perhaps it would be prudent to schedule a chest CT and, more importantly, a bone scan. It honestly baffles me that the doctor didn't suggest those immediately, though I suppose an oncologist will eventually get around to it. If there happens to be any metastasis in the bones, radiation should be administered without delay. Otherwise, the chemo protocol remains the same for everything else. Now follows a recovery period of perhaps two to three weeks before the actual treatment begins. It is truly a shame to be facing such a situation.😢

Jamie Chase said:It has been five days of recovery. There isn’t any acute pain to report, but the lack of bowel movements over these last five days is clearly causing her distress. Furthermore, she is struggling with a significant lack of strength. Since I am aware that fatigue can be a symptom of a tumor, I have to wonder: could this weakness actually be a byproduct of her gallbladder surgery just before Christmas? She was strictly following a bile-restricted diet leading up to that procedure. Additionally, she was diagnosed with diverticula in her intestines prior to the holidays, necessitating yet another specific diet. When she commits to a dietary regimen, she does so with absolute discipline; she actually lost 10 pounds between her intestinal imaging and this latest surgery. This persistent weakness and lack of stamina have been present since the gallbladder operation and haven't subsided. Her grip strength remains quite robust, yet even simple movements, such as lifting her arms or legs above her head, prove difficult.
Can anyone suggest what we should give her to boost her immune system now that she's out of the hospital?
When I asked the doctor if a CT scan was necessary, he claimed there was no point since he could see everything clearly during surgery, and that's the best way to assess it. But I am concerned about the rest of her body—her back, lungs, and so on. How can he possibly know the state of those organs without a CT or other imaging equipment?

Angela Wright said:It makes sense that she lacks strength; after all, she just had surgery. If she is losing weight rapidly, the doctor might prescribe nutritional shakes like Ensure. To bolster her immunity during this phase, she could even take a Multivitamin, which might help. For other things like Immune support supplement or Propolis, you should ask at a pharmacy, especially since her digestion isn't quite back to normal yet.

It has been three weeks since the surgery. There is no pain, but there is absolutely no strength either. She walks occasionally and eats somewhat—weakly, but she isn't refusing food entirely. We are still waiting on the pathology report (it’s been 22 days), and the delay is worrying. We called, and they just told us we aren't the only ones waiting and that it might arrive this week.
During our last talk with the doctor, I asked why the uterus and the second ovary weren't removed. He argued it wouldn't achieve anything more if the chemo works; he said the chemo will kill the cancer everywhere regardless. But thinking logically, wouldn't it be better to "remove" everything and then clean up the rest? He stated there are metastases throughout her abdomen—in the liver, intestines, etc. They are small, but they are there. I also asked him how it's possible that while checking her gallbladder during surgery, he noted a "pale liver," yet didn't see any metastases? His response was simply, "That's a two-month difference."
That answer doesn't hold much water for me, but that's where we stand.
My father's cousin went through a similar situation—markers at 11,000, abdominal metastases, and doctors telling her that only God could save her. Yet, they operated on her in Miami, removing part of her intestine, both ovaries, the uterus, and part of her liver, I believe... then chemo, and she is still alive six years later.
We are currently in a dilemma because everything was done in Mostar, and the surgeon is reputed to be good. A surgeon who worked in a major metropolitan hospital for a long time was also present during the operation; he is an expert on intestines. He stated they shouldn't touch the intestines because they would have to remove about two feet of them, and since the colonoscopy showed the interior looks good, it's better to leave them alone.
To me, it all feels like these surgeries depend entirely on which doctor you get. We worry whether a doctor in a major city like Chicago would have removed more of the affected organs. Now, if we take her to Chicago (which isn't impossible), we fear wasting precious time. With her current lack of strength, they won't even allow her to start chemo. She is taking various natural supplements to strengthen up, and she's been taking Beta-glucan for three weeks, but she's still weak. We are also worried that they didn't perform a CT scan after the surgery.
She felt particularly poorly a few times when fluid built up in her lungs, requiring them to drain it three times. Now she takes diuretics, and after that, she's doing okay. I should note, fluid in the lungs itself isn't carcinogenic.
The fact that they didn't remove the uterus and the second ovary also haunts us. Thinking rationally, if the amount of cancer is greater, isn't there a higher risk of faster or wider metastasis?
What should we do... wait for her to regain strength, or take her to a major medical center for a PET-CT or something else?
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#157 ·
Unfortunately, pleural effusion isn't a good sign, even if there aren't cancer cells floating in that fluid. It’s an indicator that the kidneys and liver are struggling, which puts extra strain on the heart—and frankly, any mechanical drainage just creates a cycle where more fluid builds up later.
Get her to a major medical center in Chicago, because based on what you've described, I’m genuinely worried she might be entering the terminal stage. As for the surgery and everything else mentioned, it's not necessarily the doctor's fault in Mostar. When metastases are spread that extensively, a more invasive surgery wouldn't have made much of a difference anyway. The goal from the jump was about extending quality of life, and that comes down to a physician's strategy and experience.
One more piece of advice: stop comparing her case to everyone else's. A massive amount of variables change the outcome—everything from the specific cancer type and grade to the stage, the location of the metastases, and the exact therapies she's received. You're just creating unnecessary stress and frustration without actually knowing all the critical details. Just focus on her and how to make her as comfortable as possible.
Jamie Chase Jamie Chase Member
20 messages
joined Jan 2015
#158 ·
Angela Wright said:Unfortunately, pleural effusion is never a positive sign, even if the fluid itself isn't cancerous. It indicates that the kidneys and liver aren't functioning optimally, which places additional strain on the heart. Any attempt at mechanical drainage only leads to more fluid accumulation down the road.
You should take her to a major medical center in a city like Chicago or New York, because frankly, based on your description, it sounds like she is entering the terminal phase of the illness. Regarding the surgery and everything mentioned—it isn't necessarily a mistake by the doctor in Mostar. When metastases are spread that extensively, a more invasive surgery wouldn't have made a significant difference. From the beginning, the goal here was about improving quality of life. That comes down to physician strategy and clinical experience.
And one more piece of advice: stop comparing her case to others. A massive number of variables change the outcome—cancer type, malignancy grade, stage, location of metastases, types of therapy received, and so on. You are simply creating unnecessary stress and frustration for yourselves without actually knowing all the critical data. Focus on her and how to make her most comfortable.

She’s been on diuretics for a week and a half now, and that heavy burden of lung fluid is gone. We are planning to take her for a lung scan sometime in the next few days.
You mention taking her to a big city, but if she is in the terminal phase, why bother with the travel? Are we not just causing her more suffering? After the surgery, the doctor estimated three to five years, so nothing makes sense to me... if we take her to a major hospital, I highly doubt they will suggest another surgery after just three weeks.
How does an entire situation escalate this much in just three or four months!?
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#159 ·
Jamie Chase said:It’s been about a week and a half since she started the diuretics, and that heavy burden of fluid in her lungs is finally lifting. We're trying to figure out which day to take her in for chest imaging.
You mentioned taking her to a major medical center in Chicago, but if she's in the terminal phase, why bother with the trip? Isn't that just causing her unnecessary suffering? After the surgery, the doctor gave us a window of 3 to 5 years, so I'm totally lost here... if we take her all the way to Chicago, I highly doubt they'll decide to operate on her again after only three weeks.
How does an entire situation escalate this much in just 3 or 4 months!?

I never said she was in the terminal phase; I said things are heading in that direction. You don't necessarily have to rush her up to a big city right away—you're just seeking a second opinion. If it turns out there's still something that can be treated to improve her quality of life, then go for it. Look, there are zero guarantees in life, but at the very least, in the worst-case scenario, you'll know you did everything humanly possible. Let's be real: some people get significantly more time through a combination of good supportive care (like Lasix, for example, though that won't stay effective forever) and palliative therapy than they would without it. But ultimately, this is a personal choice about whether you want to pursue those options or not.
Henry Garcia5 Henry Garcia5 Newcomer
4 messages
joined Mar 2013
#160 ·
I’m looking for some serious help—does anyone know a top-tier surgical oncologist who specializes in Hemangiopericytoma? Standard treatments just aren't cutting it here. Honestly, I'll look anywhere if it means finding a surgeon capable of handling this. We're talking about a woman born in 1980. She had an initial procedure at Mayo Clinic, but things went south—the doctors couldn't fully remove the tumor because of some heavy bleeding during the surgery. Now, the advice we're getting is to track down a specialist who can actually get the job done. She’s back home right now and feeling okay—no major issues so far—but we need a plan. Thanks in advance!

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