Posts by casualpanther1

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.

Hey everyone,
Honestly, it weighs on me and makes me incredibly sad that every single time I check in here, my first task is to offer condolences. So, once again, I want to express my deepest sympathy to George regarding the passing of his mother. Death is an unfortunate reality of life, and we all do everything in our power to push it as far into the future as possible.

With that in mind, we are doing everything within our reach to make this journey with glioblastoma as successful as possible. For now, it seems to be working.

My wife had an MRI last week, and they notified us yesterday that things still look "clear"—meaning there’s no recurrence. We're just waiting for the paperwork to arrive in the mail.

Thanks to the people helping us and providing support—and most importantly, my wife's unwavering faith in healing through God's grace—we are pushing forward bravely.
She is a completely normal person; anyone who doesn't know her would never guess she's sick. She's on her feet all day, handling everything, hitting the farmer's market, reading, doing crosswords, and living life just like anyone else. Occasional issues with short-term memory aren't a major hurdle for us right now.

We are continuing with the body detoxification and correcting the imbalance of minerals and trace elements. This time, we are basing it on the results of heavy metal mobilization via a DMPS urine test (essentially Metallo-Chelation therapy), which was conducted at the TOXIBA institute in Basel. Since DMPS heavy metal mobilization must be paired with orthomolecular micronutrient therapy, her daily supplement dosage will actually increase over the next two to three months.
Financially, this is becoming harder to manage, but we're making ends meet for the time being.

We also know all too well what we're up against, so we offer daily prayers to show our gratitude to God, the Virgin Mary, and dear Jesus for showing us mercy and giving us the strength to deal with this disease. And we don't just pray for ourselves; we pray for all those who are suffering. I might have been a skeptic regarding prayer in the past, but today, it is an essential part of my daily routine. And I believe—I truly, unconditionally believe—in her recovery. I believe in it more than I believe in my own life. I can't shake the feeling that the novenas being prayed for her in so many places have helped my wife keep going. And so far, she's still going strong.

In the midst of this whole life story, my own current condition is a bit of a distraction.
Angela Wright and brightgardener8, thanks for asking about the surgery results. I don't quite know whether to feel happy or sad about it, but there was no surgery. It turns out the AVM malformation is too extensive for surgical intervention. Instead, I've been referred for embolization. In this procedure, they'll perform several sessions to cut off the blood supply to the nidus—the knot where arteries connect directly to veins—and redirect the blood flow into capillaries. It's less invasive than surgery and carries less risk (or so I hope in my case). The only catch is that they currently don't have the necessary material—the endovascular glue used for the procedure. So, I'm basically "on hold." I'm on medical leave, dealing with constant pressure in my head and ringing or buzzing in my ears all day long. I'm not allowed any physical or mental exertion, and so on.
As always, there is good to be found in every evil. I spend the entire day by my wife's side.

Thanks to everyone for the support. And finally, for all those currently fighting or facing glioblastoma, here is a link for some encouragement: http://www.coed4.org/index.html

Best regards, and stay brave.

First off, my deepest condolences to everyone who has lost their loved ones.
I haven't been able to find anything regarding DCVax-Brain in Europe, but on this site: http://www.clinicaltrials.gov/ct2/sh...forme&rank=33; you can see the specific criteria for entering the clinical trials for this glioblastoma drug here in the US. It’s clear they are looking at patients who have already undergone surgery and Temozolomide treatment. I assume if this ever reaches Europe, the requirements will be just as strict.
To be honest, I find it completely baffling how DCVax-Brain could supposedly be in use in Europe while it's still only in Phase II clinical trials here in the US. No matter how much I dig online, I cannot find a single reputable source to back that up. There was some news from September 7, 2007, claiming the drug was approved in Switzerland—which the pharmaceutical company reported on its own site—and several media outlets picked it up. But after that? Total silence. In fact, that same pharma company seemed to significantly tone down their messaging in later press releases, right after their stock prices spiked following that initial announcement.
I've checked Swiss sites and German sites too; nothing.
Is it actually possible that such a promising glioblastoma treatment is being shrouded in this much mystery? If this were real, it should be headline news, not some whispered secret.
I haven't found any mention of this on clinical trial registries in England either. Maybe I'm just missing something?
Don't take this the wrong way, but it strikes me as incredibly suspicious when some unnamed oncologist offers an anonymous injection for $1,000 a week. Nobody even knows what it actually is. From what I know, oncology clinics in Washington, D.C. don't run rogue experiments; they stick to proven therapies covered by Medicare. Or am I misinformed?
If a legitimate new therapy for glioblastoma were added to the standard list of drugs, every major newspaper in the country would be shouting it from the rooftops.
Furthermore, if anyone is participating in a clinical trial, there should be strict regulations and signed consent forms involved, not just a total lack of information.
Anyway, I am hoping this therapy becomes available to us soon, but for now, I have to ask myself: am I just being overly optimistic?
Best regards, and let's not lose hope.

Hi everyone,
First off, I can tell you that my wife is doing well. In three days, it will be exactly 16 months since her diagnosis. Her next MRI is scheduled for mid-January, and I am praying to God that there still isn't any sign of a recurrence.
As for me, I can inform you all that I’ll be joining the ranks of brain surgery patients within the next two weeks. I’ve actually been at St. Jude’s Hospital for two weeks now (spending this weekend at home for two days), and on January 7th, 2008, I’ll be moving over to the Mayo Clinic for surgery.
It all started after some strange "visual sensations"—basically losing my depth perception—which first began a few years ago. Two weeks ago, I experienced that sensation again, followed by a full-blown epileptic seizure, which landed me in the hospital. All I remember is the start of the seizure and this so-called aura, a flash in my left eye that looked like a spotlight, and then nothing. It was an interesting experience, though certainly one I wouldn't want to repeat. My CT and MRI scans revealed an arteriovenous malformation with dilated feeder arteries in my brain, which was the direct cause of the seizure. It seems like this malformation was congenital, but it has finally started causing problems and making it impossible to live a normal life. I'm currently on Lamictal, so I'm protected from further seizures. Aside from some pressure in my head, I feel perfectly fine.
During today's consultation with the neurosurgeons at the Mayo Clinic, surgery was proposed as the best solution, and I have accepted. I can tell you that I'm not afraid; if anything, it's the opposite. I want this done as soon as possible so I can be in top shape for when my wife is going to need me much more than she does right now. Of course, there is always a risk with brain surgery, but I deeply believe I won't face any negative consequences. And if there have to be risks, I'd rather take them than deal with the state I'd be in without the operation.
Because of this, I won't be around the Forum for a while.
Thank you all, and especially Ivanica, for the support you provide us in this fight.
I wish everyone on the Forum success in their battles against illness in the coming year of 2008.
Best regards to everyone, and I'll write back once I've recovered from the surgery.
casualpanther1

slyseal28 said:My husband just got his chest CT results back, and they are absolutely FANTASTIC!!!

Way to go, slyseal28—seriously, kudos to you.
There are always people who come out on top. You two will be right there with them if you just stay the course.
Thanks for sharing such wonderful, uplifting news with all of us. Just keep pushing forward.
Best regards,

[QUOTE=brightgardener8;
What about Zofran? Is anyone using it? Does anyone know how much it costs?
Thanks!

brightgardener8,
My wife was given Zofran in the outpatient clinic as part of her treatment alongside Temodal.
She only needed it for a few days at the very start of the therapy, and after that, it wasn't necessary anymore.
If you're dealing with nausea after taking Temodal, try talking to the oncologist about getting it prescribed as part of the regimen.
Best regards,

A little bit of good news,

Despite my wife's diagnosis, we aren't letting it break us. If anything, we’re working harder than ever to maintain some sense of normalcy, and so far, we’re actually pulling it off. We refuse to let life just stop because of a medical label. Before she was diagnosed, she had already crushed all her exams at the university; the only thing left on her plate was her final thesis. Yesterday—fifteen months after the diagnosis hit us—she defended that thesis and officially graduated.
Maybe this little victory can serve as a reminder to someone else out there: don't throw in the towel, no matter what kind of diagnosis you're facing or how brutal the illness gets.

Best regards to everyone,

Angela Wright said:My mom passed away peacefully this morning.
I want to thank everyone here for the support you've shown me during this incredibly difficult chapter of my life.
Love you all! May God bless you in your own struggles. Keep pushing forward.

Dear Jane Doe,
Please accept my deepest condolences.
I know I can't take away the pain or ease this loss, but watching how hard you fought to save her and extend her life has been an inspiration to me while I fight for my own loved one.
Don't let this loss break you. Take that same passion and energy you used to care for her and channel it into living the life you have ahead of you.
May God watch over you and your dad.

It’s been a while, so hello to everyone.
First off, my sincere condolences to everyone who has lost their loved ones.
To those still fighting for themselves or their families, I pray God grants you faith in recovery, the patience to endure these brutal moments, and the strength to keep pushing through this fight.
We are still in the ring, too. My wife's brain MRI from October 12, 2007—which came over 13 months after her initial diagnosis—showed no visible signs of tumor recurrence.
She’s feeling good. Whenever we can find the time, we get out for walks in the fresh air (we usually do a loop around Central Park—3.4 miles sometimes three days in a row). For the most part, I can say we’re living a completely normal, ordinary life. The only thing that serves as a constant reminder of the diagnosis is the mountain of supplements my wife takes every single day. Her next MRI is scheduled in three months.
In the meantime, we sent hair samples for toxicological testing to the Pfizer institute in San Francisco. Based on those results, our next steps involve a full body detox (using DMPS) to clear out all the trace elements and metals that are sitting above safe levels, followed by replenishing what she's missing. We'll be using supplements from the Rockefeller Foundation. We are adjusting her entire supplement regimen accordingly.
I am grateful to the Virgin Mary, dear Jesus, and Almighty God that things have gone well for us up to this point. I would give anything to keep this momentum going until a new cure is found and we finally see a full recovery. Despite everything I know about this disease, I dare to believe it will become one of those long-term survivable conditions.
Am I crazy?
Hang in there, everyone. Don't let them win.

Linda Campbell, I am so incredibly sorry for your loss.

brightgardener8 said:Is your mom still undergoing chemotherapy?
We started the second cycle of Temodal today, and they bumped the dose up to 320 mg this time. My mom is dealing with nausea and vomiting again... We’re going to have to try that thing with the linen because I honestly don't know what else to do. Reglan and Peptoran clearly aren't cutting it.

Maybe Zofran would help. You usually take it about half an hour before the Temodala to keep the nausea at bay. My wife took it for the first few days of chemo, but she didn't end up needing it later on since the nausea became manageable. It's something the oncologist at the hospital prescribes. A side effect can be constipation, so you really have to adjust her diet accordingly. She's also still taking Peptoran every morning and night.
To protect the stomach and boost the immune system throughout the entire chemo process—and she's still doing it now—my wife takes Virosalus based on her nutritionist's recommendation. It's a probiotic dietary supplement made from goat milk. It's produced by MarinaLab in Washington, D.C. If goat milk isn't tolerated, then Acidosalus is an option. You can find more info here: .
Maybe it will help you guys too.
Best regards, stay strong.

Anonymous said:Does anyone know if there's any truth to the claim that people dealing with Glioblastoma shouldn't take Vitamin C or eat fruit like lemons and oranges?

I haven't heard anything like that before. Our nutritionist actually recommended taking one capsule of Vitamin C twice a day. We also stick to natural juice blends—usually carrot, apple, and tangerine, or a mix of beet, apple, and carrot. When tangerines aren't in season, I just swap them out for oranges. If we’re ever too busy to squeeze everything fresh, we grab some 100% natural juices from Del Monte. My wife has been following this regimen for almost eight months now.
I’ve come across plenty of discussions suggesting that high doses of Vitamin C are worth considering. Of course, it’s likely a highly individual matter—just like pretty much everything else when you're dealing with glioblastoma. In our specific case, both the medical protocol and everything we've done outside of it have proven effective. We are approaching the one-year mark since the initial diagnosis, and honestly, I’d go as far as to say things have been about as good as they could possibly be since the surgery. We have an MRI scheduled for late September, which will give us the definitive word on whether we can stay on this positive track.
Best wishes to everyone. Hang in there.

Angela Wright said:Hey dear, any updates?
I hope everything is still under control.🙂

Thanks for asking, Jane. I'm happy to share an update: Thank God, things are under control and looking good. The brain MSCT scan with contrast performed last Friday showed absolutely no sign of recurrence or remaining tumor tissue.
Our next follow-up—a brain MRI—is scheduled for three months from now.
Right now, a massive weight of uncertainty has been lifted from our shoulders, and we are feeling incredibly relieved.
That said, we aren't delusional; we know we've essentially just delayed what might inevitably arrive at some point down the road. It could be tomorrow, in a few days, months, years, or maybe it never happens. We might not have the power to change the diagnosis itself, but we can lean into our faith in God, who gives us the strength to endure this and the courage to believe that a victory is actually possible.
Thank you all for the help, the support, and for standing by us.
I wish everyone here strength, courage in the fight, and hope for recovery. There are always people out there beating even the most aggressive diseases. Why shouldn't it be us or those we love most?

Best regards to everyone,

Anonymous said:My aunt just finished her first round of temozolomide and some other medication yesterday, but she’s been hit really hard by it. She can barely stand up, and her appetite is nonexistent. What kind of supplements could I get her to help build her strength back up? She’s already taking Noni, Biogen, and CoQ10, plus plenty of fruits and veggies, but she can't touch meat. I'm struggling to figure out what works because, for example, Vitamin B isn't supposed to be taken alongside Biogen. If anyone knows anything—please help..

When dealing with loss of appetite and weight loss during chemotherapy, an oncologist might recommend "ProSure." In the US, it's available through specific medical channels, and if you have a prescription from a specialist, it's quite affordable—only about $0.80 per 2 oz carton. You just need to ensure the prescription explicitly states it's based on a specialist's recommendation.
The full retail price without a prescription for the same size is $13. The dosage is two cartons a day.
My wife has been using it for several months now and hasn't experienced any side effects at all.
For more details, check out the website http://www.prosure.ws/en/index.html
Best,

Greetings, everyone,

For over eight months now, alongside my wife's standard medical protocol for glioblastoma, we have been using a variety of supplements and mushroom-based preparations—specifically Agarikon and Lentif, from the Dr. Myko brand.
During the first four months, she was taking heavy doses: 7.5 dl of Lentif and 6 dl of Agarikon every single day.
Right now, her regimen consists of 30 days at 3 dl of Agarikon daily, followed by 10 days of 7.5 dl of Lentif combined with 3 dl of Agarikon daily, and then another 30 days of 3 dl of Agarikon per day.
Personally, I have zero doubts that these preparations have contributed positively to my wife's stable condition, but keeping up with this pace is a massive financial strain (our current mushroom protocol averages about $1.50 per month)

Does anyone have any insight regarding efficacy, daily dosages, duration of use... or perhaps you've heard someone else's experience using these specific supplements?

On another note, my wife begins her sixth cycle of chemotherapy with Temozolide next week.
Everything has been going well so far; she is doing good, and I haven't noticed any signs of tumor growth. We are hoping, with God's help, that the scans after this sixth cycle will look positive.

I wish you all strength and a positive mindset.

Dear Ivanica,
No one can do more for someone else than what you are doing for your mom.
Your selflessness, your grit, and your courage serve as an example to all of us facing our own impossible situations.
Don't let despair take hold. No matter how brutal this fight gets or how it ultimately turns out, your life is still ahead of you. Keep your chin up, and have faith in your future. One day, your own family will look back and be incredibly proud to have had someone like you by their side.