Resources and support for families dealing with cancer and serious illness

Grace Fowler said:Hello to all my dear fellow warriors!!!
Everything is going smoothly and feeling quite light for me... 😉 I honestly don't know how else to describe it, but this round of immunotherapy and electrotherapy was a complete success; I didn't experience a single unpleasant side effect, and everything just went by incredibly easy. I recently had some lung scans done, which show the exact same status as they did three months ago, all four of my usual tumor markers are right within the normal range, and my blood counts are looking excellent too. My dear friends, I feel wonderful; it seems like I always get a little extra wind in my sails just when everyone else thinks things are looking their darkest. I am keeping all of you and your loved ones in my thoughts and sending so much strength your way, because I truly believe that staying positive gives us that vital extra boost we need to keep fighting.
My results from Germany are still quite fresh, so once I’ve had a chance to rest a bit, I will check back in with more specific details.
Warm regards, Grace

P.S. I just wanted to add one more thought—over these long nine years of battling this beast, I have become personally convinced that the true path toward healing (and I really do mean true healing) lies in combining modern medicine with alternative approaches. I don't mean to offend anyone, but unfortunately, there is no such thing as a single "magic bullet" cure that works all by itself....

Way to go, Grace, just keep moving forward!!! That is exactly how true warriors handle this!!!👍🙏

Dear Anna,
As someone whose own mother spent her first six months relying exclusively on macrobiotics, bioenergy, and homeopathy—only to suffer a relapse shortly after—I am telling you with absolute certainty: you cannot treat CANCER through alternative means alone.
I appreciate the info you shared, but your premise is fundamentally flawed and lacks any actual foundation. Real claims require hard scientific evidence backed by years of rigorous clinical studies and peer-reviewed research.
In my view, what you’ve listed is about as effective as taking some nonni or aloe vera. They might be healthy, they won't hurt you, and they might offer some support, but for heaven's sake, they don't cure cancer. We know plenty of characters who swear they were cured thanks to nonni and aloe vera, but anecdotal stories aren't truth; truth requires legitimate proof. Can you wrap your head around that? My mother took nonni every single day from the moment she was diagnosed until just before she passed, for two years and four months straight at the recommended dosage, and it didn't cure her. Believe me, there are countless people just like you who praise it to the heavens as an absolute panacea for everything. Let's not delude ourselves by stating something incredibly obvious as if it were a fact when it isn't. It is deeply irritating, especially to those of us who have stared this problem in the face and actually done the heavy lifting of researching the reality of the situation.

Dear Angela Wright,
I am so incredibly sorry for what happened to your mother. 😢 That is precisely why I am writing; I believe we can save other lives.
Specifically, at the Oasis of Hope hospital in Mexico, Dr. Contreras successfully treats patients using synthesized Laetrile—also known as Vitamin B17 or Amygdalin—substances which are found in their highest concentrations in bitter apricot pits.
In addition to that, they follow a strict nutritional protocol (Metabolic Therapy in Cancer).

These are testimonials from people who have actually recovered there:
http://www.worldwithoutcancer.org.uk/oasissuccess.html
Here, you can find professionally documented case studies of recoveries:
http://www.worldwithoutcancer.org.uk/success.html
Honestly, I don't think there is any better evidence than this!

For instance, the son of Max Factor, Donald Factor, was treated there. Back in 1986, he had lung cancer that had already metastasized to his liver, and other doctors told him he only had four months left to live.
To this day, he is alive and healthy, completely cancer-free.

This is the hospital's official website:
http://www.oasisofhope.com/cancerhos...stimonies.html

As for that nonni, I read about it while I was in Austria—I currently live in Bex. A significant number of people there developed hepatitis from it, and it was flagged as unsafe. 🤷

Best regards,
Ann.

Grace Fowler said:Greetings to all my dear warriors!!!
I am feeling quite sprightly and energetic today... 😉 I suppose there isn't much to report, other than the fact that both the immunotherapy and the electrotherapy sessions were successful; I experienced absolutely no discomfort, and everything proceeded quite smoothly... I had a lung scan performed which indicates the exact same status as three months ago, all four tumor markers I typically monitor are within normal limits, and my blood count is in excellent condition. My dear friends, I feel wonderful; it seems I always receive a bit of a tailwind just when everyone else assumes things have taken a turn for the worse... I am keeping all of you and your loved ones in my thoughts, as positive energy truly provides that extra measure of strength needed for the fight.
Everything is still quite fresh from my trip to Germany, so once I have rested a little, I shall return with all the specific details...
Warm regards, Grace

P.S. I simply wish to add that over these long nine years of battling this affliction, I have personally become convinced that the true path toward recovery—and I genuinely mean recovery—lies in combining modern medicine with alternative approaches. I mean no offense to anyone, but unfortunately, a single "magic bullet" does not exist in isolation...

It brings me immense joy to hear that everything went well and that your results are within the normal range! A smile immediately formed on my face upon reading that you are feeling so spirited and well! That is what matters most—that you feel good and maintain your positive, fighting spirit! Every piece of good news you share pushes us all to keep moving forward without faltering!

Enjoy a pleasant and well-deserved rest... and please, do write back with your impressions!

kisses

Just checking in to say my dad finished his two-day chemo round and feels great, thank God. Not even a hint of nausea or vomiting. He says it’s like he didn't even get the treatment. At least there's some good news.

Grace Fowler said:Hey there, my amazing fellow fighters!!!
Everything is smooth sailing over here... 😉 I don't know what else to say, but both the immunotherapy and the electrotherapy worked wonders! No side effects at all—it was a total breeze... I just had my lung scan done and it looks exactly the same as it did three months ago. All four tumor markers I usually check are right within the normal range, and my blood counts look great too. Honestly, guys, I feel wonderful. It feels like I always get a second wind right when everyone thinks things are looking grim. I'm sending so much love and keeping my fingers crossed for all of you and your loved ones fighting this battle... positive energy really does give you that extra boost!
Everything is still fresh from my trip to Germany, so once I catch my breath, I'll check back in with all the details.
Best, Grace

P.S. I just wanted to add that after 9 long years in this fight, I'm totally convinced that the right path toward healing (and I truly mean healing!) is combining modern medicine with alternative approaches. I don't mean to offend anyone, but unfortunately, there's no such thing as a single "magic pill"...

It is so good to see you doing so well! And looking so pumped up, too!👍Way to go, Grace! Only true heroes can fight this fight for 9 years!
I completely agree with you about blending science with alternative medicine... it gives you that extra spark and strength to keep fighting and believing that it's never too late!

Hey, people!👋
Not a single one of you has stepped up to answer the fighter's call to share a quote or a meaningful motto. We want to provide something for those newly diagnosed and their families—a tiny spark or a compass in the sudden darkness they've been thrown into. Just think back to how you felt when you were going through it. Now, you have the chance to actually make a difference for others and provide the support that nobody provided for you. These quotes will go straight onto the brochures we’re putting together; all we need now is your wisdom and the funds to get them printed. Come on, send over those quotes so we can take this completed brochure and start knocking on the doors of the Department of Health and Human Services and potential sponsors or donors.

On that note, I’m also calling on anyone who can spare a few bucks for this noble and vital cause—our "first aid" brochures. Please send your donations to the association "for a new day" account. When you fill out the transfer, just write "donation" instead of "membership fee."

Post your quotes here

Everyone, thank you from the bottom of my heart to those responding to our "knowledge against cancer" campaign. This is on behalf of everyone facing such an incredibly difficult and extreme life situation!

It’s hardly a profound quote, but it certainly sticks with you:

My father has always been a strictly rational man. But once he fell ill—it's only been a month—he suddenly became open to anything. Mushrooms, weird tonics, walking barefoot on gravel, all that nonsense. 🙂

But he said something once—and I suspect some of you have heard a similar thing, unfortunately: "If I knew for a fact this would cure me, I'd drink liquid sewage right now."

Hearing that gave me a laugh and a stab to the heart at the same time. It’s incredible how much a person can change in a single day. I think you all understand what I mean.

Love to you all,
And P.S. If anyone actually knows anything about lizard cancer, please reach out.

My life is so desperate right now that I can't see a way forward or how to comfort myself. I just don't know... my dad is doing very poorly (brain tumor). His condition deteriorated so rapidly from the start of the week until yesterday, when we couldn't wake him up at all during the afternoon. He's disoriented and snoring constantly. This is the first time he's been this lethargic—we all panicked so hard, I honestly thought he had fallen into a coma. We could barely communicate with him while giving him dinner, and even then, he could barely swallow and kept coughing.

I’ve been following the posts here over the last few days regarding alternative treatments, and I have to say I agree with most of what's been written, especially what Nusazvrk and Ivanna wrote. If there were a cure that would 100% heal my father, wouldn't I—and everyone else—grab it immediately? Personally, I believe in alternatives because my dad still uses various "alternative" things, and while I believe they can help significantly, they haven't cured him... He uses flaxseed oil, shark cartilage, cat's claw, and a whole list of other things, but his condition just keeps getting worse.
Throughout his illness, I believed—and still believe—that alternative methods can do a lot of good, but they must work alongside modern medicine. As much as I want to believe that alternative therapy is a silver bullet, life is slowly proving me wrong.

I personally know a woman who had colon cancer back in 1991 and was helped by macrobiotics, but I also believe that what works for one person doesn't automatically work for someone else. We are all different; every disease and condition is unique. Even when two people have the same diagnosis, the stage of the disease varies, their bodies vary, so what works for one might not work for another.
Maybe I'm rambling, but I'm just completely lost right now.

Linda Peterson37 said:My life feels so incredibly bleak right now that I can't see a way forward, let alone how to comfort myself... I just don't know. My dad is doing very poorly (brain tumor); his condition plummeted so fast from the start of the week until yesterday, when we couldn't wake him up at all for the entire afternoon. He's just drifting in and out of consciousness and snoring... This is the first time it's been this bad—he was so lethargic that we all panicked, thinking he had slipped into a coma... We could barely communicate with him while trying to give him dinner, and even then, he couldn't really swallow and kept coughing...

I've been following the discussions here over the last few days regarding alternative treatments, and I have to say I agree with most of what’s been posted, especially what Nusazvrk and Ivanica wrote. I mean, if there were a cure that was 100% guaranteed to fix my dad, wouldn't I—and everyone else—grab it in a heartbeat to save him? Personally, I believe in alternative options because my dad still uses various "alternative" supplements today, and while I truly believe they can provide significant support, they haven't cured him... Even now, he’s taking flaxseed oil, shark cartilage, cat's claw, and a whole laundry list of other things, yet his condition continues to decline...
Throughout his entire illness, I believed—and I still want to believe—that alternative methods can do a lot of good when used alongside modern medicine. But as much as I want to believe that alternative therapy is some kind of magic bullet, reality keeps slapping me in the face.

I personally know a woman who had colon cancer back in 1991 and was helped by macrobiotics, but I also firmly believe that what works for one person doesn't automatically work for someone else. We are all different, and every disease and physical state is unique. Sometimes, even when two people are diagnosed with the exact same illness, the stage of the disease varies, their bodies react differently, so what saves one person might do nothing for another...
Maybe I'm rambling, but I'm just completely lost right now.

There is a high probability that edema flared up when his condition took such a sudden turn for the worse. It would be ideal if he could get an IV drip of mannitol to help reduce the swelling, and then perhaps increase his dose of dexamethasone to keep him in a more stable state, likely via injections. Is he even receiving dexamethasone at all?

Angela Wright said:I suspect there's a high chance brain edema flared up when his condition dropped that fast. It would be ideal if he could get an IV drip of mannitol to reduce the swelling, then bump up the dexamethasone dose—likely via injection—to keep him stabilized. Is he even receiving any dexamethasone right now?

He was getting it while he was hospitalized, but since they discharged him a week ago, he hasn't had any because the discharge papers didn't list it as a continuing medication.
It doesn't make sense to me. My mom is heading to the doctor today to see if we can administer it at home... is that even allowed? We're just laypeople here, and the doctors aren't explaining anything. We don't even know what questions to ask or what medications he needs, especially since nothing was written in the discharge instructions about continuing it.😕

Linda Peterson37 said:While he was in the hospital, they were giving him mannitol, but since he got discharged a week ago, he hasn't been getting any because the discharge papers didn't say anything about continuing it.
It’s all a bit blurry to me. My mom is actually heading to the doctor today to see if we can just administer this at home... I mean, is that even an option? We’re total amateurs here, and the doctors aren't saying much, so we don't even know what we should be asking or what needs to be given... the discharge summary just left us hanging on whether to continue or not.😕

From what I understand about this whole mess, patients with brain tumors stay on dexamethasone throughout the entire illness—basically as long as there's edema present.

My mom has been on dexamethasone for about a year now, with just a few short breaks.
At first, we had to drive her to the clinic every single day for shots, but six months ago, she finally qualified for a home health nurse to come by and handle the injections.

But guess what? Today I got word that Medicare rejected her!!! Yeah, apparently she doesn't qualify anymore. 😠
What does that even mean for a single board (🙂) when you're dealing with a woman who has glioblastoma, who's been living with the diagnosis for a year, is incontinent, barely mobile, completely disoriented, and suffering from dementia...? Sure, she can just waddle over to the clinic herself for her shot, right?

I'm filing an appeal tomorrow. Honestly, I don't know what else to do.

Linda Peterson37 said:While he was hospitalized, he was receiving dexamethasone, but since they discharged him a week ago, he hasn't been getting it because they didn't include it in his discharge papers.
It’s all a bit confusing for us; my mom is heading to the doctor today to see if we can manage this at home... I mean, is it even possible to give this at home? We are total laypeople here, and the doctors aren't saying much, so we don't even know what questions to ask or what medications should be administered... the discharge summary just left it out.😕

What a mess.🙄
Ever since my mother had her relapse, she was constantly on dexamethasone, which we would adjust up or down based on how she seemed to be doing—basically eyeballing it, following the doctor's suggestion that there isn't much more precise way to determine the dosage than by clinical observation. You can take Dexice at home in 0.5mg tablets via prescription, but you'll find yourselves running back to the primary care physician every few days for a new script if, say, he needs 18mg of dexamethasone daily—which is highly likely given the condition you described. That would mean taking 36 tablets a day, which is essentially three whole boxes every single day. A doctor can usually only write for six boxes at a time. There isn't a "large dose" version of Dexice other than those 0.5mg tablets. There are higher doses in vials, but those aren't available by prescription because they are strictly for hospital use.🙄 Basically, if your primary care doctor is an honest person, they might provide those vials from the clinic's supply, which is intended for patients exactly like your father. We weren't that lucky, so we ended up going to a private pharmacy to buy the vials ourselves along with syringes and needles, and then I administered the injections to my mom myself, just like the visiting nurse showed me how to do. Fortunately, she passed away before we even reached the point where I'd have to start managing IV drips.🙄 Now, a visiting nurse could technically administer those injections once a day when she visits, but honestly, they often hesitate to step in.🙄 Try talking to her and making a real plea. I actually told mine that I would sign a written statement taking full personal responsibility if anything went wrong (and you can imagine how easily things can go wrong for someone whom the doctors have already essentially given up on☕).

My advice? Call 911 and get him to a neurological or oncology ER so they can stabilize him with immediate first aid—mannitol, followed by Dexice injections—and make sure they write down the specific therapy regimen so your primary care doctor can actually write the prescriptions for the tablets.That is exactly how we handled it when my mom hit that stage, and it stabilized her.
Ideally, the visiting nurse would give him half the dose via injection in the morning, and then you guys could split the rest into two doses throughout the day using the tablets. To make it easier for Mom, we used to crush the tablets in a mortar and pestle and mix them into yogurt so she wouldn't choke and could swallow them more easily.

Your dad's edema definitely flared up because of medical negligence.🙂

brightgardener8 said:From what I understand about this whole situation, brain tumor patients are kept on dexamethasone throughout the entire illness—basically as long as there’s any edema present...

My mom has been on dexamethasone for about a year now, with just a few short breaks.
At first, we were driving her to the clinic every single day for her shots, but six months ago, she finally qualified for home health nursing to administer them.

But today, I got word that the board rejected her!!! Basically, they decided she doesn't qualify anymore. 😠
What does that actually mean to some bureaucratic board (🙂)? It means a woman with glioblastoma who has been fighting this for a year, who is incontinent, barely mobile, completely disoriented, and suffering from dementia...?! Apparently, she's perfectly capable of walking herself down to get an injection...

I'm filing an appeal tomorrow; I don't know what else I can do!

The primary care doctor is suggesting we just buy the Dexice ampules from a pharmacy in the city and have the home nurse handle it.
Honestly, dealing with Medicare and their "VIP" review board gives me such bad diarrhea at least twice a day!

Angela Wright, if they already turned down my mom's request for a home health nurse, how on earth are they supposed to approve home nursing visits? It makes zero sense! Since home nursing isn't even part of primary care—it’s handled differently depending on which region you live in—I’m going to try pushing that angle too.
The one silver lining here is that the woman watching over my mom while we're all at work knows how to give injections, so we managed to figure things out ourselves.


Linda Peterson37,
I'd just add one thing: home nursing visits aren't actually the responsibility of the community nursing service. You get a visiting nurse based on requests from specialists and GPs, so people really need to pay attention to that distinction.

In our case, we were stuck for two months because I used the wrong terminology. I kept asking for a home nursing nurse, and my GP kept acting like he was some kind of genius. It wasn't until I finally lost my cool and told him straight up that the oncologist confirmed my mom is entitled to this care that he suddenly "remembered." He goes, "Oh, yeah, but that's not a home nursing nurse, that's a visiting nurse." And just like that, everything was fixed...😈
Then again, maybe you guys have better doctors than we did...

brightgardener8 said:Angela Wright, if they already turned down Mom's request for a home health nurse, I have absolutely no clue how they’re going to approve home health aides! It makes zero sense. Since home health services aren't even under the jurisdiction of primary care—they're handled differently depending on which region you're in—I'm going to try pushing that angle too.
It’s a silver lining, really—since the woman looking after my mom while we're all at work actually knows how to administer injections, we've been able to manage everything this way.


Linda Peterson37,
I should probably point out one more thing: you can't just call home health services and expect them to come by to give injections. That’s not how it works. You actually need to get a referral from your specialist or primary care physician first to secure a visiting nurse. Make sure you keep that in mind.

We ended up in this mess because I used the wrong terminology when I was making my request. Home health nurses. We missed out on those two months of benefits because our primary care doctor decided to play smart with us. He wouldn't budge until I finally lost my cool and practically screamed at him that the oncologist explicitly confirmed Mom was entitled to that coverage. Only then did he try to pivot with some technicality, claiming, "Sure, she's eligible, but that’s a medical nurse, not home health care." 😈 And just like that, everything was settled...
Maybe you guys have found a better doctor than I have...

For God's sake, what exactly is a home health nurse supposed to be if not a registered nurse doing field work?! It’s not like they're out there giving haircuts.🙄
Look, if you can actually find a doctor and a nurse who aren't complete tools—someone who still acts like a real medical professional or a decent home health aide—you can usually work things out behind the scenes. You can bypass all the red tape and the bureaucratic nonsense from Medicare entirely.
We managed to get a bit of a lucky break on our end.
Honestly, I have no clue what these people are blathering about when they talk to you.🤷We finally got the specialist's recommendation for home health care added to the medical history. We headed over to the primary care physician, who then dispatched a field nurse to evaluate the patient's condition and determine the best course of care. Based on that assessment, the GP writes up the official proposal sent to the review board to get everything approved. Everything clicked because a visiting nurse from an agency contracted with Medicare came out, and she had already been in contact with my mom’s doctor. This woman went above and beyond—she did absolutely everything required, from brushing teeth and changing diapers to dressing wounds when a nail fell off, and even stayed through lunchtime to make sure she was fed. Honestly, I think it all comes down to those internal connections between decent people, if God wills it.

Hi there,
I just wanted to jump back into this conversation regarding dexamethasone. My mom was on a 4 mg dose of dexamethasone until the eleventh month, and at that point, her oncologist suggested we try switching over to Medrol—specifically 16 mg in the morning and 8 mg in the evening. Honestly, Mom has been feeling wonderful since we made the switch—we haven't changed a thing—and she’s even moving her leg much better now than she did while on the dexamethasone. I know Angela Wright mentioned before that Medrol might not be quite as effective when it comes to treating brain edema, but hey, we aren't having any issues as of right now. I have to admit, I was pretty confused when the doctor first prescribed the Medrol, mostly because it seemed like everyone else was using Dexice.🤷

Karen Fox36 said:Hey there,
I just wanted to jump back into this conversation about dexamethasone. My mom was staying on 4 mg of dexamethasone until the eleventh month, at which point her oncologist suggested we try switching over to Medrol—specifically 16 mg in the morning and 8 mg in the evening. Honestly, she’s been feeling wonderful since the switch, so we haven't felt the need to change a thing; she’s even moving her legs better now than she did before starting the Medrol. I remember Angela Wright mentioning back then that Medrol might not be quite as effective when it comes to dealing with brain edema, but hey, we aren't having any issues so far. I have to admit, I was pretty confused when the doctor first prescribed the Medrol, especially since it seems like everyone else is using Dexice.🤷

My mom is also on Medrol (she takes 32mg in the morning after breakfast, along with some Ranitidine beforehand). Since she started that dosage back on July 10th, she’s been so much more alert and active, even if she still can't get around much.

Elizabeth Diaz60 said:My mom is on Medrol too (32mg in the morning after breakfast, paired with Ranitidine before she eats). Since she started that specific dose back on August 10th, she’s been way more alert and active, even if she isn't moving around much physically.

During radiation and those first 42 days of Temodal, my wife was on dexamethasone. Right after that, they started tapering her off using Medrol (starting November 13, 2006). We began with a 40 mg dose of Medrol, then cut it by 25% every three days until she was completely off it. She was also taking Tegretol and Peptoran at the time. Over time, we dropped the Peptoran, but she’s still taking Tegretol to this day. Thank God, there hasn't been any need for Medrol or dexamethasone since then.
Best wishes and hang in there.

"The American Cancer League has decided to launch a nationwide educational campaign titled 'Stop Chemotherapy Nausea and Vomiting.' The goal is to shine a light on the fact that effective treatments actually exist to manage nausea, vomiting, and the various other side effects patients endure while undergoing chemotherapy or other cancer treatments. This initiative is primarily aimed at patients fighting malignant diseases and their families, though it’s also intended for medical professionals and the general public alike.
For more details on managing chemo-induced nausea and vomiting, you can find everything you need here."

If I may just add my two cents—it’s about damn time. 🙏

slyseal28 said:"An American cancer league has decided to launch a national awareness campaign titled 'Stop Chemotherapy Nausea and Vomiting.' The goal is to shine a light on effective treatments available to prevent nausea, vomiting, and other side effects faced by patients undergoing chemotherapy or other cancer treatments. This initiative is primarily aimed at cancer patients and their families, but also reaches out to the medical community and the general public.
For more details on managing chemo-induced nausea and vomiting, visit here."

I’ll just add one thing—it’s about damn time. 🙏

If I were to walk outside right now, I’m pretty sure a chainsaw would drop from the sky and hit me square in the head.🙄
Does this campaign actually have anything to do with us?!😕🤷

It’s going to be quite an experience when our own brochures finally hit the streets.😈