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Resources and support for families dealing with cancer and serious illness

Started by Angela Wright · · 👁 98 views · 3K replies

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Participants Angela WrightChristian Wilson16Morgan Williams4Jeremy Nelson3John Chase6steelbadger83hiddentiger80urbanjackal3silentviper30mistyranger4ruggednomad182placidfalconJerry Morales4frozenviper492velvetgull9Joshua Flores48Frank Ramirez23Roger Hall15Walter Cox5mellowlynx8boldjackal70northernfox9ALaura Gomez10 …
Amanda Nelson54 Amanda Nelson54 Member
15 messages
joined Mar 2008
#2321 ·
My deepest condolences to you and your family. I know there isn't much anyone can say right now to ease the weight of this loss, but I truly believe your mother is at peace now, free from all her pain... You’ve gained the best possible guardian angel to watch over you.
Hang in there...
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#2322 ·
slypanther332 said:Hey everyone, I’m kind of at a loss here, but I stumbled upon this forum last night while surfing the web.
Seven months ago, my best friend's mother was diagnosed with a malignant astrocytoma—a star-shaped brain tumor. It was about 4.9cm, so they performed surgery to remove it, but it doesn't look like they got all of it. She had a rough recovery; she couldn't move and needed physical therapy, but thankfully, she pulled through. However, just a week ago—seven months after the initial surgery—an MRI showed the tumor has returned and spread. It’s grown to 5cm now!!!
I’ve been looking into Dr. Arsenic and Paladin in Washington, D.C., as well as that alternative practitioner from Mexico you guys mentioned... How can I get in touch with them? If anyone has any experience or advice on what to do, or what alternative treatments you’re using, PLEASE HELP ME!!!!!

To the guy whose mom passed away—please accept my deepest condolences. Just remember, death is only the beginning. Hang in there...

slypanther332, check your PMs. I sent you a private message.🙂
Sophia Price5 Sophia Price5 Newcomer
2 messages
joined Jan 2008
#2323 ·
The One, my deepest condolences.
velvetgull9 velvetgull9 Active Member
113 messages
joined Dec 2005
#2324 ·
The One, I am so incredibly sorry.

I’ve been thinking about you all so much lately, especially while reading this book that really hit me hard. It’s by Daniel Wallace, and the US title is Big Fish, published by Mosaic Books. Behind those plain covers is this intense story about a father dying of cancer and his grown son spending those final days by his side. It’s such a complex look at two people who don't actually know each other that well because they never really had the time to bond, and their struggle to overcome themselves and make up for lost time.

I was honestly crying one minute and laughing the next. It made me relive some moments with my own dad, just... differently, I guess.

I won't say this is some life-changing manifesto, but maybe it'll help someone out. It definitely helped me. I'm pretty sure it'll be one of those books I always keep within reach. 🙂
Laura Kelly91 Laura Kelly91 Member
23 messages
joined Dec 2007
#2325 ·
The One, here’s my honest take, once again! We’re heading into some heavy days ahead—a real battle with yourself—but you have to push through. There were moments when I genuinely thought I wouldn't make it, but look at me, I'm still standing. It's been nine months since Mom passed, and just 23 days since Dad followed her... hang in there!
brightgardener8 brightgardener8 Active Member
157 messages
joined Jul 2007
#2326 ·
Anonymous said:My mom passed away this morning at 10:05, just three and a half months after her diagnosis...

I am so sorry, The One. Sending you my deepest condolences.
Carol Sanchez2 Carol Sanchez2 Active Member
85 messages
joined Apr 2007
#2327 ·
The One!;12448390 said:My mom passed away this morning at 10:05, just three and a half months after her diagnosis... Even though I'm going to miss her terribly and I know I'll

I am so incredibly sorry for your loss! Please find some peace in knowing you were right there by her side through everything. I always like to say in times like these that your mother will continue to live on through you.
Megan Perez67 Megan Perez67 Newcomer
5 messages
joined Jan 2008
#2328 ·
Anonymous said:My mom passed away this morning at 10:05, just three and a half months after her diagnosis... Even though I know I’m going to miss her terribly and will probably see her in my dreams more often than I'd like, there’s a part of me that feels relieved because she’s finally at peace. She isn't in pain anymore, and she doesn't have to struggle just to take a sip of water...
The hardest moment so far was seeing her being carried out in her casket, and I know the truly difficult part is still ahead of me when we lay her to rest. I've been leaning on medication all day just to get through, but I'm hanging in there somehow... Anyway, sending my best wishes to everyone and wishing you all the very best..

Please accept my deepest condolences. I am truly sorry for your loss.
Richard Smith31 Richard Smith31 Member
14 messages
joined Oct 2006
#2329 ·
Hey everyone🙂
Has anyone here actually tried products from Mykosan www.zdravljeizgljiva.hr??
mellowbadger5 mellowbadger5 Newcomer
2 messages
joined Jul 2007
#2330 ·
I got in touch with them and sent over my mom's test results—they told me to expect an answer in a day or two. Since there are several different types of these supplements, they’ll look at her specific diagnosis and how far things have progressed to recommend a particular combination of mushrooms or extracts. You’ve already read their website, so I don't really know much more than that, but honestly, I feel like we have nothing to lose—and if God is willing, we might actually gain something—by giving this a shot. We're in a desperate spot because the illness has reached such a critical stage, and the doctors aren't offering anything beyond just managing the symptoms.
Zachary Booth3 Zachary Booth3 Member
27 messages
joined Dec 2008
#2331 ·
My dear dad has been in the hospital since Friday... His condition took such a sudden turn for the worse that we were all blindsided. Even though we already have a diagnosis, he had been doing okay with just occasional neurological episodes that stabilized quickly. It turns out he has brain edema. I've been doing some digging here on the forum and across the web to see what can be done. I noticed many people have experience using Mannitol, and that’s what they’re giving him now... Can anyone give me some specific insights on this medication? I haven't even had the chance to catch up on all the pages yet...

I'm devastated. I break down several times a day, and my stomach is in knots because seeing him like this is just unbearable... I just want to see him get back up out of that bed..
We are also giving him some alternative supplements that some top experts in this field from the US recommended, but I can't shake the feeling that there's more that can—and should—be done...
I'm just angry at everyone and everything because he shouldn't have to go through this...
Alex White6 Alex White6 Member
22 messages
joined Jun 2006
#2332 ·
Hi everyone, I honestly thought I’d never have to start a thread like this, but unfortunately, here we are.
I recently found out that my aunt, who I've been living with for six years now, has stomach cancer. It was only caught in stage 4, once it had already progressed quite far. After all the initial shock, grief, and tears, I’m moving into a phase of pure anger. Anger at myself as I try everything in my power to make things easier for her, anger at this disgusting, sneaky disease that I want to beat right alongside her, and finally, anger at this one highly acclaimed, famous, and supposedly "expert" gastroenterologist in Washington, D.C. He simply wasn't capable of diagnosing a tumor that was already advanced, and he wouldn't even perform a gastroscopy despite her telling him for months that something felt wrong.

Because of his nonchalance and supposed "expertise" (she went to him for stomach issues, but he "read" uterine fibroids and polyps on an ultrasound—which, of course, didn't even exist), the tumor perforated her stomach, and she nearly died from sepsis.

Thank God for the doctors at Rib who reacted so quickly and saved her life. Her condition is critical, but we're hoping for the best possible outcome.

We really owe that "expert" gastroenterologist a private lawsuit, but I’m afraid that given his reputation, it would just be a losing battle against windmills.

Hang in there, everyone... I'm heading off now to visit my dear aunt and try to make her smile a little.
A Anonymous Veteran
3.6K messages
joined May 2005
#2333 ·
The One my heart truly goes out to you..

Does anyone know anything about Boswellia supplements or Iscador?
I remember reading something about Iscador somewhere on this forum, but I can't seem to track down the post. Has anyone here dealt with GMB relapses? What’s the best way to handle things? We aren't certain yet, but we're worried because the swelling keeps coming back.. 😢
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#2334 ·
Linda Peterson37 said:I’ve seen people sharing all sorts of experiences with Mannitol, and they’re giving him that too... can someone please tell me something specific about this drug? I haven't even had the chance to dig through all the pages yet...

I'm just devastated. I break down several times a day, and my stomach is in knots because it's so hard to see him like this... I just want to see him get out of bed again..
We’re also giving him some alternative things that top experts here in America recommended, but I can't shake the feeling that there’s still something more that needs to be done—that we *must* do something...
I’m angry at everyone and no one at the same time because he’s the one going through this...

Mannitol is a sugar-based solution most commonly used to treat brain edema caused by physical trauma. When dealing with brain swelling that's a side effect of a tumor, it works, but it has a yo-yo effect—the swelling recedes suddenly and then surges back—so it’s usually paired with dexamethasone, essentially steroid therapy.
If that swelling takes the form of hydrocephalus—basically a massive buildup of cerebrospinal fluid in the brain's ventricles—it can be drained via a procedure called stereotactic surgery. They make a tiny hole in the skull (just 1-2 mm wide) and use a needle to drain the fluid. This is a standard procedure out here, but our doctors won't touch it unless it's an absolute emergency or if you practically beg them. Once that’s done, the improvement is instant. My mother was practically in a coma when they did it for her. The procedure takes maybe twenty minutes, and by the time she was back in her room, she was completely lucid. It made follow-up therapy so much easier; they were able to drop her dose from 24 mg down to just 8 mg of dexamethasone, which was enough for her to function.

I know you’re angry and heartbroken that this is happening to him, but unfortunately, this is just what happens—it happened before, it's happening now, and it will happen to many others. There are no rules. Cancer strikes the good and the bad equally. It just happens. Try to process that within yourself, because dwelling on the "why" will drain you dry and leave you unable to function. I’m telling you this from my own thick, bitter experience. The sooner you accept the reality of the situation, the easier it will be to handle everything and do the best you can to help him. And believe me, when it comes to brain tumors—because that disease is such a curse—the family helps more than the doctors ever will. Put your faith in Divine providence. Even when you think things can't get any worse, they can, but both the suffering and the pain can be eased. So, believe that things will get better.
Harold Richardson4 Harold Richardson4 Member
16 messages
joined Nov 2007
#2335 ·
Anonymous said:The One I offer my sincerest condolences.

Does anyone here have any actual insight regarding Boswellia supplements or Iscador?
I recall reading something about Iscador here on this forum at some point, but I can't seem to track down the specific thread. Does anyone actually have firsthand experience dealing with GBM recurrences? What’s the best course of action in these situations? It’s all speculation, of course, but there is a growing suspicion regarding the recurring swelling. 😢

I actually wrote to you just a few days ago regarding those Iscador holly injections. If you go back two or three pages, you'll find it. Namely, Linda Peterson37 was asking about the holly injections a couple of days back.
casualpanther1 casualpanther1 Member
37 messages
joined Feb 2007
#2336 ·
Hi everyone,

gentlemoose62 - BRAVO!! Seriously, well done. I am so happy we finally have some great news to share. Just keep pushing forward with everything you've got.

Grace Fowler - Wishing you nothing but the best with your recovery.

Elizabeth Gonzalez55 - You won the first round. Keep that momentum going. Victory goes to those who believe.

The One - I am so deeply sorry for your loss. Words don't really do much good right now, but your mother is free from all her earthly pains and is in the Divine realm now, watching over you throughout your life.

BILBOU - My—well, my wife—has been using Mykosan products (Agarikon and Lentifom) since the very beginning, right after she was discharged from the hospital. For eight months, she took heavy doses of Lentifom paired with double Agarikon. After that, she moved to lower doses of Lentifom and one Agarikon for several months. Then came a few months of doing an Agarikon cycle for ten days every three months. Now, she’s heading back into heavy doses of Lentifom and double Agarikon for a ten-day cycle every three months.
Since we are dealing with GBM, there isn't much room left for philosophy in this fight.
From day one, we followed the advice of a friend who recommended Mykosan because he had seen a "medical impossibility" case within his own family. No one can say for certain if these mushroom supplements are the reason that person is still alive four years after diagnosis with the tumor halted, but they are convinced the supplements played a massive role.
I am just as convinced myself that the key lies in this combination: Divine help through prayer as the first pillar providing the spiritual strength needed for a positive mindset; an incredibly successful surgery and a positive reaction to Temodal as the second—and most critical—pillar for GBM; Mykosan mushroom supplements as the third, which has significantly helped ensure that, 17 months since diagnosis, there are no definitive signs of recurrence or spreading.
Of course, nutrition and supplements recommended by nutritionists are the fourth pillar that has allowed my wife to feel completely healthy so far. And we can't forget the fifth pillar: love.
Whatever the case, we built a defense system where mushroom supplements are a vital component, and so far, the whole thing is working. Honestly, it doesn't matter to me which part gets the credit; what matters is that it works.
My experience over these last 17 months tells me that a timely, uncompromising fight supported by God can yield results even with GBM.
One more extremely important point: so far, we have been able to afford all of this. It’s getting harder, but we're managing. The entire regimen is quite expensive, and the mushroom supplements are a major part of that cost.
Because our experience has been so positive, I can wholeheartedly recommend these supplements as an addition to regular medical therapy.

Naturally, everything I've said applies to our current situation. I know full well that major trials lie ahead and our battle is far from over. We will give everything we have to turn the medically predicted outcome of this GBM fight in our favor.

Best wishes to everyone. Stay brave and keep moving toward healing with Divine help.
Richard Smith31 Richard Smith31 Member
14 messages
joined Oct 2006
#2337 ·
mellowbadger5 and casualpanther1, thanks so much for the heads-up🙂
It sounds like a serious option worth looking into!
So, if I’ve got this right, I need to get in touch with them and fax over the diagnosis so they can map out a treatment plan? I'm going to give them a call first thing tomorrow morning—we've got nothing to lose!
Richard Smith31 Richard Smith31 Member
14 messages
joined Oct 2006
#2338 ·
Alex White6 said:Hi everyone. Honestly, this is the kind of thread I always hoped I’d never have to start, but unfortunately, here we are.
I recently found out that my aunt, who I've been living with for six years now, is battling stomach cancer. It was only caught in stage 4—it's already advanced. I'm moving through the stages of shock, grief, and endless crying, but now I'm hitting the anger phase. I'm furious—trying everything in my power to make her life easier right now—but I'm also just pure rage at this disgusting, sneaky disease that I want to crush alongside her. And finally, I am absolutely livid at this one highly acclaimed, famous, and "overly qualified" gastroenterologist in Washington, D.C. He was completely incapable of diagnosing a tumor that was already in an advanced stage, and he wouldn't even perform a gastroscopy despite her telling him for months that she wasn't feeling right.

Because of his total nonchalance and supposed "expertise" (she went to him for stomach issues, and he somehow "read" uterine fibroids and polyps on an ultrasound—which, of course, didn't even exist), the tumor perforated her stomach, and she nearly died from sepsis.

Thank God for the doctors at Rib who reacted so fast and saved her life. Her condition is critical, but we're hoping for the best possible outcome.

As for that "expert" gastroenterologist, all we can really do is look into a private lawsuit, but I'm terrified that given his reputation, it would be like tilting at windmills.

Hang in there, everyone. I'm heading off now to visit my dear aunt and try to make her laugh a little.

I am so incredibly sorry about your aunt.😢
Unfortunately, you won't achieve anything by staying angry; try to channel that energy into something productive instead, or just save it—you're going to need it!
I've snapped a million times myself, and if I could sue half the healthcare system instead of just biting their heads off, I would. But it is what it is, and hopefully, things will change someday! At the end of the day, doctors aren't gods either—especially when it comes to cancer—and they're often just stumbling around in the dark themselves.
Stay strong.🙂
Richard Smith31 Richard Smith31 Member
14 messages
joined Oct 2006
#2339 ·
Linda Peterson37 said:My dear dad has been in the hospital since Friday... his condition took such a sudden turn for the worse that we were all caught completely off guard. Even though we already have a diagnosis, he had actually been doing okay, just dealing with occasional neurological episodes that stabilized pretty quickly.... It turns out he has brain edema, so I've been doing some digging here on the forum and all over the web to see what can be done. I've seen that many people have experience with Mannitol, and that's what they're giving him right now... Can anyone give me some specific insight regarding this medication? I haven't even had the chance to catch up on all the pages yet.....

I am just devastated. I break down several times a day, and my stomach is in knots because it's so incredibly hard to see him like this... I just want him to be able to get out of bed again..
We are also giving him some alternative supplements that some of the top experts in this field here in America recommended, but I can't shake the feeling that there is more that can—and should—be done...
I'm just so angry at everyone and everything because he's the one going through this...

He’ll get better. My dad went through similar "episodes," and his condition improved again. They drained the fluid for him, and he’s on Dexedrine which is really helping fix things!
I know how agonizing it is to see him in that state, but it is what it is. Hang in there and stay strong; my old man hasn't had any issues with edema for a good month now.🙂
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#2340 ·
Linda Peterson37 said:My dear father has been in the hospital since Friday... his condition deteriorated so rapidly that despite knowing the diagnosis, we were all caught completely off guard, especially since he had seemed to be doing okay, aside from those occasional neurological episodes that seemed to stabilize quickly.... It turns out he has brain edema, and I’ve been doing a bit of digging here on the forum and across the web to see what can be done. I noticed many people have shared their experiences with Mannitol, which is what they are administering to him now... could anyone provide some specific insight regarding this medication, as I haven't quite managed to get through all the pages yet.....

I feel utterly hopeless. I break down several times a day, and my stomach knots up with nausea because seeing him in this state is just so difficult... I just want to see him get back on his feet again..
We are also giving him some alternative supplements that were recommended by some of the leading experts in this field here in America, but I can't shake the feeling that there might be something more that can, and should, be done...
I find myself feeling angry at everyone and everything, simply because this is happening to him...


It is nearly impossible not to fall apart when you are facing a situation like this... please, try to have faith, even if it's hard, embrace the despair if you must, but try to find the strength within... I truly hope you find a way to help him and that a path toward recovery reveals itself!

Thinking of you all. Kisses.

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