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Brain tumor diagnosis, 2 days ago


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#1 garlicknots

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Posted 09 September 2009 - 08:16 PM


Well,

Well,

I haven't really posted here in awhile because I spent 2 years in Mongolia as a Peace Corps Volunteeer. I came back to America for 1 month as vacation since I extended for another year in Mongolia. Unfortunately, I had a seizure a few days after returning and an MRI shows a stage 2/3 brain tumor. Wow.

I'm obviously reading the other cancer threads, but I don't think my prognosis is good. I will visit memorial sloan and cornell wiell in NY tomorrow for surgery consults. Surgery will be done within the week. Memorial sloan has interesting clinical trials on going (beta glucan, etc.)

I am 25, 25. I was a healthy and ate all my flax seed and curcumin the last few years. I can't believe that I was a volunteer 1 week ago in Mongolia and was heading backing in a few weeks and now I'm heading into neuro surgery. I suggest you guys get an MRI or something done if you have the smallest doubts.

Other information I am working on understanding:

1. I had been taking piracetam on and off as a nootropic. I have been prescriped levitracetam as an anti-siezure drug. Would piracetam have been doing a similar function before? Unfortunate.

Looking into beta glucans, resv, keto diets, etc.

I just wanted to write a message somewhere that will stay on the internet that I wanted at some point to live forever and experience the world. Oh well.

Questions I ought ask a neurosurgeon tomorrow?

fahd.

#2 kismet

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Posted 09 September 2009 - 08:37 PM

I am 25, 25. I was a healthy and ate all my flax seed and curcumin the last few years. I can't believe that I was a volunteer 1 week ago in Mongolia and was heading backing in a few weeks and now I'm heading into neuro surgery. I suggest you guys get an MRI or something done if you have the smallest doubts.

Unfortunately, that won't work as well as we'd wish to. Screening MRI/CT is not yet recommended and endorsed by evidence based science, because the rate of false positives is alarming and too many lesions are neither cancer nor will those benign tumours ever develop into aggressive disease, AFAIK. So the lack of screening probably wasn't your problem. Maybe a screening + watchful waiting approach would work, but cancer screening is a difficult field.

I just wanted to write a message somewhere that will stay on the internet that I wanted at some point to live forever and experience the world. Oh well.

Questions I ought ask a neurosurgeon tomorrow?

Consider cryonics.

Edited by kismet, 09 September 2009 - 08:38 PM.


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#3 Rational Madman

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Posted 09 September 2009 - 09:39 PM

I am 25, 25. I was a healthy and ate all my flax seed and curcumin the last few years. I can't believe that I was a volunteer 1 week ago in Mongolia and was heading backing in a few weeks and now I'm heading into neuro surgery. I suggest you guys get an MRI or something done if you have the smallest doubts.

Unfortunately, that won't work as well as we'd wish to. Screening MRI/CT is not yet recommended and endorsed by evidence based science, because the rate of false positives is alarming and too many lesions are neither cancer nor will those benign tumours ever develop into aggressive disease, AFAIK. So the lack of screening probably wasn't your problem. Maybe a screening + watchful waiting approach would work, but cancer screening is a difficult field.

I just wanted to write a message somewhere that will stay on the internet that I wanted at some point to live forever and experience the world. Oh well.

Questions I ought ask a neurosurgeon tomorrow?

Consider cryonics.

Look, I can understand your enthusiasm for cryonics, but given the seriousness of his diagnosis, and his myriad concerns, I don't think it would be appropriate to waste precious time discussing cryonics. Especially since his prognosis is not clear, and because he'll be visiting a neurosurgeon at Memorial Sloan-Kettering Cancer Center---which is a premier institution.

As for questions for your physician....
Beyond asking for an honest assessment of your prognosis, most of the appointment should revolve around possible treatment options: surgery, radiation therapy, etc. If there is a chance that the tumor is operable, I wouldn't hesitate to grant your consent. Surgery, or radiosurgery will yield the best outcome.

#4 castrensis

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Posted 09 September 2009 - 09:56 PM

I came back to America for 1 month as vacation since I extended for another year in Mongolia. Unfortunately, I had a seizure a few days after returning and an MRI shows a stage 2/3 brain tumor. Wow.


Not necessarily bad news at this point. MRI is only able to indicate what grade the tumor appears. Definitive grading requires a biopsy of the tumor, usually taken during resection of the tumor. Grade II or III, depending on the type of tumor, is much preferable to Grade IV of any type. There are five basic types of brain cancer. Astrocytoma (most common), Oligodendroglioma, Medullablastoma (usually restricted to children), Ependymomas, & Primary CNS Lymphoma (although this is typically limited to immunosuppressed folks, e.g. transplant recipients, HIV/AIDS). Grade II Astrocytoma is defined as a low-grade tumor with little evidence of malignant behavior, Grade III (anaplastic astrocytoma) exhibits features which indicate a tendency for rapid growth but lack the necrotic features of Grade IV (gliobastoma multiforme). Grade II Oligodendrogliomas are usually quite indolent, Grade III/IV (anaplastic oligodendroglioma) exhibit the more aggressive characteristics of malignancy. Ependymomas are typically benign.

I'm obviously reading the other cancer threads, but I don't think my prognosis is good.


The prognosis entirely depends on the type of cancer & its grade. Don't let yourself become hopeless for a cure before the pathology reports are back & you've reviewed the plan of care with your neurosurgeon/neurologist/oncologist. Other factors that result in increased survival is the neurosurgeon's ability to completely remove the tumor, this will depend on the location & whether or not it can be excised without complicating the neurological impact of the tumor. Occasionally debulking of the tumor will result in decreased neurological deficits, decrease your tumor burden &, theoretically, result in better outcomes. I work with a gentleman who has survived glioblastoma multiforme (the most common tumor with lowest chance of disease-free survival) for greater than ten years & have had patients walk (!!) out of the hospital after successful treatment of GBM.

On the other hand, I don't want to encourage false hope. The best advice is to hope for the best, prepare for the worst.

I suggest you guys get an MRI or something done if you have the smallest doubts.


Kismet's right on this point.

1. I had been taking piracetam on and off as a nootropic. I have been prescriped levitracetam as an anti-siezure drug. Would piracetam have been doing a similar function before? Unfortunate.


Effects of piracetam alone and in combination with antiepileptic drugs in rodent seizure models.

The nootropic drug piracetam was investigated in various experimental models of epilepsy. Generally, piracetam exhibits no or only moderate anticonvulsant properties against generalized tonic or clonic seizures. However, in many cases it did increase the anticonvulsant effectiveness of conventional antiepileptics, as shown in the maximal electroshock seizure (MES) threshold test, the traditional MES test or in DBA/2 mice. A pharmacokinetic interaction does not seem to be responsible for this effect. In lethargic mice, a model of absence seizures, piracetam significantly decreased the incidence and duration of spike-wave discharges. Furthermore, in the cobalt-induced focal epilepsy model piracetam reduced the number of spikes/min and in the hippocampal stimulation model it increased the anticonvulsant potency of phenobarbital and phenytoin after single and repeated administration. In conclusion, the well tolerated piracetam itself did not show marked anticonvulsant effects in most screening tests, however, its co-medication with antiepileptic drugs improved seizure protection in various models which may bear potential clinical significance.


Questions I ought ask a neurosurgeon tomorrow?


Where is the tumor located?
In his opinion, based on the MRI, what type/grade of cancer is it?
-Keep in mind that this can only be definitely determined by examination of the tumor tissue.
Based on the MRI is the tumor able to be completely excised, only debulked or entirely inoperable?
-Neurosurgeon may not be able to tell you for certain until he opens up your head. Cyberknife is sometimes an option for inoperable tumors.

Edited by castrensis, 09 September 2009 - 10:14 PM.


#5 kismet

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Posted 09 September 2009 - 10:21 PM

Look, I can understand your enthusiasm for cryonics, but given the seriousness of his diagnosis, and his myriad concerns, I don't think it would be appropriate to waste precious time discussing cryonics. Especially since his prognosis is not clear, and because he'll be visiting a neurosurgeon at Memorial Sloan-Kettering Cancer Center---which is a premier institution.

Oh, you're right. My choice of words (& quote tags) was pretty poor. I don't mean that he should bother his neurosurgeon with cryonics (that'd be absurd indeed), but that it is an option worth considering if the tumor carries a bad prognosis. I wanted to mention it now lest I forget.

Edited by kismet, 09 September 2009 - 10:21 PM.


#6 garlicknots

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Posted 09 September 2009 - 11:19 PM

Right, I guess the MRI suggestion was foolish but I was just diagnosed with a brain tumor so I have an excuse--haha. I guess I'll be able to use that line somewhat frequently whenever I say something silly in the next few weeks.

The tumor is about 6 cm long. it is located in the front left lobe. Unfortunately personality and intellect. It might not seem like it, but I have a personality.

At least as far as surgeons go I will be able to pick amongst the best in the field which will be useful for surgery and resection. A consultation today implied that the growth was in a limited area, but the doctor did mention that he thought it was moving toward stage 3 and thus getting more diffuse and harder to control. That did not sound good.

Well. My insurance is currently through the peace corps (and will be as long as the us government stays afloat--) and their benefits are excellent. I can pretty much go anywhere I'd like to any doctor--but unfortunately they don't cover cryonics. If it comes down to cryonics, I might be able to scrounge up the money. I think I will be able to. Just dealing with family perceptions on cryonics at that stage. I will look into that after surgery and some other treatment results.

Anyone have an opinion on Mayo vs. Memorial sloan? Memorial sloan is doing more clinical trials in less toxic forms of research from my initial research.

Speaking of which--my seizure happened 2 minutes from Maine Main Hospital which is where the first immortalist was treated. I was taken to the emergency room there. Unlike him I will not be smoking cigarettes.

Will provide more information after surgery and biopsy.

#7 Rational Madman

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Posted 09 September 2009 - 11:39 PM

Right, I guess the MRI suggestion was foolish but I was just diagnosed with a brain tumor so I have an excuse--haha. I guess I'll be able to use that line somewhat frequently whenever I say something silly in the next few weeks.

The tumor is about 6 cm long. it is located in the front left lobe. Unfortunately personality and intellect. It might not seem like it, but I have a personality.

At least as far as surgeons go I will be able to pick amongst the best in the field which will be useful for surgery and resection. A consultation today implied that the growth was in a limited area, but the doctor did mention that he thought it was moving toward stage 3 and thus getting more diffuse and harder to control. That did not sound good.

Well. My insurance is currently through the peace corps (and will be as long as the us government stays afloat--) and their benefits are excellent. I can pretty much go anywhere I'd like to any doctor--but unfortunately they don't cover cryonics. If it comes down to cryonics, I might be able to scrounge up the money. I think I will be able to. Just dealing with family perceptions on cryonics at that stage. I will look into that after surgery and some other treatment results.

Anyone have an opinion on Mayo vs. Memorial sloan? Memorial sloan is doing more clinical trials in less toxic forms of research from my initial research.

Speaking of which--my seizure happened 2 minutes from Maine Main Hospital which is where the first immortalist was treated. I was taken to the emergency room there. Unlike him I will not be smoking cigarettes.

Will provide more information after surgery and biopsy.

Well, the Mayo Clinic is reputed to have the best neurology/neurosurgery department in the world, but Memorial Sloan-Kettering should not be very far behind. If you decide to stay at Memorial Sloan-Kettering, I would try for Dr. Philip Gutin--the Chairman of the Department of Neurosurgery.

Edited by Rol82, 09 September 2009 - 11:40 PM.


#8 3VeRL0ng

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Posted 09 September 2009 - 11:57 PM

Perhaps Graviola could/may be helpful: http://www.iherb.com...sules/4677?at=1

... from looking at a couple of the reviews on there (especially that second one down) it does seem pretty promising for fighting off (lung & brain) cancer/tumors. However, I had just heard of this herb only a couple of days ago (hence the lack of any articles to support this) so unfortunately I don't really know a whole lot about it; but thought it might be something for you to consider.

#9 garlicknots

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Posted 10 September 2009 - 04:07 AM

Perhaps Graviola could/may be helpful: http://www.iherb.com...sules/4677?at=1

... from looking at a couple of the reviews on there (especially that second one down) it does seem pretty promising for fighting off (lung & brain) cancer/tumors. However, I had just heard of this herb only a couple of days ago (hence the lack of any articles to support this) so unfortunately I don't really know a whole lot about it; but thought it might be something for you to consider.



Cassileth B.

Memorial Sloan-Kettering Cancer Center, New York, New York, USA.

Graviola demonstrated anticancer effects in vitro, but has not been studied in humans. Despite the lack of human data, many websites promote graviola to cancer patients based on traditional use and on the in vitro studies. Caution is required as there is no evidence of safety or efficacy.

-
PMID: 18935929 [PubMed - indexed for MEDLINE

Going to mskcc in the next day or two. Will ask among other things. Very little other informaiton on pubmed. Concerned about contraindications with other alternative remedies.

Vasconcelos AF, Monteiro NK, Dekker RF, Barbosa AM, Carbonero ER, Silveira JL, Sassaki GL, da Silva R, de Lourdes Corradi da Silva M.

Departamento de Física, Química e Biologia, Faculdade de Ciências e Tecnologia, Universidade Estadual Paulista, CP 467, CEP 19060-900, Presidente Prudente, São Paulo, Brazil.

Four exopolysaccharides (EPS) obtained from Botryosphaeria rhodina strains isolated from rotting tropical fruit (graviola, mango, pinha, and orange) grown on sucrose were purified on Sepharose CL-4B. Total acid hydrolysis of each EPS yielded only glucose. Data from methylation analysis and (13)C NMR spectroscopy indicated that the EPS from the graviola isolate consisted of a main chain of glucopyranosyl (1-->3) linkages substituted at O-6 as shown in the putative structure below: [carbohydrate structure: see text]. The EPS of the other fungal isolates consisted of a linear chain of (1-->6)-linked glucopyranosyl residues of the following structure: [carbohydrate structure: see text]. FTIR spectra showed one band at 891 cm(-1), and (13)C NMR spectroscopy showed that all glucosidic linkages were of the beta-configuration. Dye-inclusion studies with Congo Red indicated that each EPS existed in a triple-helix conformational state. beta-(1-->6)-d-Glucans produced as exocellular polysaccharides by fungi are uncommon.

- PMID: 18639868 [PubMed - indexed for MEDLINE]

I don't understand this study, can someone explain?

#10 niner

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Posted 10 September 2009 - 04:30 AM

Vasconcelos AF, Monteiro NK, Dekker RF, Barbosa AM, Carbonero ER, Silveira JL, Sassaki GL, da Silva R, de Lourdes Corradi da Silva M.

Departamento de Física, Química e Biologia, Faculdade de Ciências e Tecnologia, Universidade Estadual Paulista, CP 467, CEP 19060-900, Presidente Prudente, São Paulo, Brazil.

Four exopolysaccharides (EPS) obtained from Botryosphaeria rhodina strains isolated from rotting tropical fruit (graviola, mango, pinha, and orange) grown on sucrose were purified on Sepharose CL-4B. Total acid hydrolysis of each EPS yielded only glucose. Data from methylation analysis and (13)C NMR spectroscopy indicated that the EPS from the graviola isolate consisted of a main chain of glucopyranosyl (1-->3) linkages substituted at O-6 as shown in the putative structure below: [carbohydrate structure: see text]. The EPS of the other fungal isolates consisted of a linear chain of (1-->6)-linked glucopyranosyl residues of the following structure: [carbohydrate structure: see text]. FTIR spectra showed one band at 891 cm(-1), and (13)C NMR spectroscopy showed that all glucosidic linkages were of the beta-configuration. Dye-inclusion studies with Congo Red indicated that each EPS existed in a triple-helix conformational state. beta-(1-->6)-d-Glucans produced as exocellular polysaccharides by fungi are uncommon.

- PMID: 18639868
I don't understand this study, can someone explain?

This isn't really about graviola per se, but about fungi that happened to be eating graviola, along with some other rotting tropical fruit. These fungi produced an unusual carbohydrate that was exposed on their cell surface. This may well have nothing to do with graviola's use as a drug, unless graviola extracts are normally contaminated with such fungi, which I kind of doubt...

#11 Rational Madman

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Posted 10 September 2009 - 05:00 AM

Perhaps Graviola could/may be helpful: http://www.iherb.com...sules/4677?at=1

... from looking at a couple of the reviews on there (especially that second one down) it does seem pretty promising for fighting off (lung & brain) cancer/tumors. However, I had just heard of this herb only a couple of days ago (hence the lack of any articles to support this) so unfortunately I don't really know a whole lot about it; but thought it might be something for you to consider.



Cassileth B.

Memorial Sloan-Kettering Cancer Center, New York, New York, USA.

Graviola demonstrated anticancer effects in vitro, but has not been studied in humans. Despite the lack of human data, many websites promote graviola to cancer patients based on traditional use and on the in vitro studies. Caution is required as there is no evidence of safety or efficacy.

-
PMID: 18935929 [PubMed - indexed for MEDLINE

Going to mskcc in the next day or two. Will ask among other things. Very little other informaiton on pubmed. Concerned about contraindications with other alternative remedies.

Vasconcelos AF, Monteiro NK, Dekker RF, Barbosa AM, Carbonero ER, Silveira JL, Sassaki GL, da Silva R, de Lourdes Corradi da Silva M.

Departamento de Física, Química e Biologia, Faculdade de Ciências e Tecnologia, Universidade Estadual Paulista, CP 467, CEP 19060-900, Presidente Prudente, São Paulo, Brazil.

Four exopolysaccharides (EPS) obtained from Botryosphaeria rhodina strains isolated from rotting tropical fruit (graviola, mango, pinha, and orange) grown on sucrose were purified on Sepharose CL-4B. Total acid hydrolysis of each EPS yielded only glucose. Data from methylation analysis and (13)C NMR spectroscopy indicated that the EPS from the graviola isolate consisted of a main chain of glucopyranosyl (1-->3) linkages substituted at O-6 as shown in the putative structure below: [carbohydrate structure: see text]. The EPS of the other fungal isolates consisted of a linear chain of (1-->6)-linked glucopyranosyl residues of the following structure: [carbohydrate structure: see text]. FTIR spectra showed one band at 891 cm(-1), and (13)C NMR spectroscopy showed that all glucosidic linkages were of the beta-configuration. Dye-inclusion studies with Congo Red indicated that each EPS existed in a triple-helix conformational state. beta-(1-->6)-d-Glucans produced as exocellular polysaccharides by fungi are uncommon.

- PMID: 18639868 [PubMed - indexed for MEDLINE]

I don't understand this study, can someone explain?


If I were you, I would eschew alternative remedies supported by a less than comfortable amount of empirical evidence.

Here are some safe recommendations that have neuroprotective, anticonvulsant, and immune boosting properties:
Fish Oil
Calcium
Glycine
Taurine
Vitamin C
Melatonin
Carnosine
Garlic
Olive Leaf Extract
Ubiquinol
Resveratrol
Vitamin D3


Of course, these remedies are no substitute for FDA approved treatments indicated for your condition. So, consult with your doctor, and heed his expert advice.

Besides these recommendations, eliminate all substances that have pronounced stimulatory properties: caffeine, ginkgo, guarana, tyrosine, etc. Because of their potential for precipitating seizures, it would be highly advisable to avoid dopaminergic and cholinergic drugs and supplements as well.

As for dietary guidelines, I would suggest nothing less than a ketogenic diet.

If you're not currently taking a prescription anticonvulsant, I implore you to seek authorization for one with all possible speed. Lithium, Lamictal, Dilantin, and Gabapentin would be good candidates with a proven record of efficacy.

Finally, it's critically important that you reduce your stress levels. Get plenty of sleep, meditate, join a support group, try attending church (even if the notion of religion is absurd), give yoga a chance, and consider massage therapy if your budget permits such a luxury.

Edited by Rol82, 10 September 2009 - 06:19 AM.


#12 lunarsolarpower

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Posted 10 September 2009 - 05:02 AM

Speaking of which--my seizure happened 2 minutes from Maine Main Hospital which is where the first immortalist was treated. I was taken to the emergency room there. Unlike him I will not be smoking cigarettes.

Will provide more information after surgery and biopsy.


Glad to hear that. I have to concur with the hope for the best and prepare for the worst advice. I can't wait 'til we get these pesky biological problems all licked someday. Best of luck as you investigate your options.

#13 nightlight

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Posted 10 September 2009 - 06:25 AM

...I had a seizure a few days after returning and an MRI shows a stage 2/3 brain tumor. Wow.
...
I am 25, 25. I was a healthy and ate all my flax seed and curcumin the last few years.


Wow, indeed. At age 25! That's much too young for cancers. I wonder what might have caused it? Did you have brain scans or tomography of some sort (e.g. as diagnostic for your earlier seizures) or were exposed to other radiation or uncommon substances at some earlier time? Or had some head injuries (soccer? boxing?) requiring x-rays in your teens? Did you use cell phones or 2-way radios extensively or reside near radio/tv towers?

Anyway, I am really sorry for your bad news. Maybe it's time to father a kid or two if you don't have any.

#14 ppp

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Posted 10 September 2009 - 06:33 AM

What about noscapine?


Noscapine crosses the blood-brain barrier and inhibits glioblastoma growth.
Landen JW, Hau V, Wang M, Davis T, Ciliax B, Wainer BH, Van Meir EG, Glass JD, Joshi HC, Archer DR.

Department of Cell Biology, Emory University School of Medicine, Atlanta, Georgia 30322, USA.

The opium alkaloid noscapine is a commonly used antitussive agent available in Europe, Asia, and South America. Although the mechanism by which it suppresses coughing is currently unknown, it is presumed to involve the central nervous system. In addition to its antitussive action, noscapine also binds to tubulin and alters microtubule dynamics in vitro and in vivo. In this study, we show that noscapine inhibits the proliferation of rat C6 glioma cells in vitro (IC(50) = 100 microm) and effectively crosses the blood-brain barrier at rates similar to the ones found for agents such as morphine and [Met]enkephalin that have potent central nervous system activity (P < or = 0.05). Daily oral noscapine treatment (300 mg/kg) administered to immunodeficient mice having stereotactically implanted rat C6 glioblasoma into the striatum revealed a significant reduction of tumor volume (P < or = 0.05). This was achieved with no identifiable toxicity to the duodenum, spleen, liver, or hematopoietic cells as determined by pathological microscopic examination of these tissues and flow cytometry. Furthermore, noscapine treatment resulted in little evidence of toxicity to dorsal root ganglia cultures as measured by inhibition of neurite outgrowth and yielded no evidence of peripheral neuropathy in animals. However, evidence of vasodilation was observed in noscapine-treated brain tissue. These unique properties of noscapine, including its ability to cross the blood-brain barrier, interfere with microtubule dynamics, arrest tumor cell division, reduce tumor growth, and minimally affect other dividing tissues and peripheral nerves, warrant additional investigation of its therapeutic potential.

PMID: 15297423 [PubMed - indexed for MEDLINE



#15 garlicknots

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Posted 11 September 2009 - 06:36 AM

Hmm.

1. Scheduled for neurosurgery on Monday 9/14. I will have at least 2-3 days of downtime post op. I hope that I write a message thereafter. Surgeon Dr. T. Schwartz implies that the tumor is definitely operable. Not in the best spot (is there a best spot for a brain tumor?) but in an operable location. He plans to remove all of it that is visible. Will probably affect right side of my body for weeks, month? Should not affect language, cognition, personality. Should not. Surgery at Cornel Wiell in NY. Plan to do joint treatment with MSKCC.

2. No significant causes. 5 days ago was my first seizure. I get maybe 2 headaches per year before this. I have probably taken 5 aspirin/tylenol/ibuprofen in the last 5 years. No brain scans before. 2+ years ago I used to solder electronic components to make amplifiers, DACs, etc. That was probably soldering for 2 hours/week for 3 months. I used fans and simple filters while soldering. If there was an external cause, that is currently the only one that I can think of. I have been primarily eating Chinese produced vegetables for the last 2 years particularly red peppers and tomatoes that anecdotal evidence implies have higher pesticide counts but I doubt that would have/could have been the cause. 5-7 years ago I went through an experimental drug stage 2-3 uses each of e and mushrooms. (Will probably delete that information pre op for legal reasons).

3. During surgery will do cell biopsy. Currently there are no plans for immediate radiation or chemo therapy. Post op MRI. 3 month MRI. 6 month MRI. Will have cell sample reviewed by at least 2 oncologists. I will do my best not to have chemo. I should make a written statement to that effect.

Post Op Plans:

4. Ketogenic diet. Did 1 day fast 2 days ago and then placed myself on a ketogenic diet for the last 2 days (9/9-9/10). Surgeons imply that at least for the time being my primary concern should be removing the tumor. Afterwards ketogenic diets and other supplementation can take hold. Right now the growth is too large. This much I can understand.

Therefore with impending surgery T-3days I broke the ketogenic diet with a chicken and lamb over rice though I refrained from the rice. For the next 2 days I will eat the things I'd like to eat, though I will be somewhat ketogenic about it. For 2 years in Mongolia I wasn't able to eat the things I enjoyed eating (though I ate head after head of garlic, curcumin, grass fed meat, etc.) and I might not be able to enjoy those things ever again so I'll spend 2 days eating what I want. Preferably sashimi. Quality of life is pertinent.

Post op I will implement a ketogenic diet. I am not sure if I can do it at the hospital--I don't really have that much time to talk to them about it, but I will try. Else, within 2-3 days after surgery if I am myself.

Post op I will resume supplementation. Surgeon and oncologists suggest that I should refrain for the next 2-3 days in case there are blood thinners, etc. I can accept that advice for the time being.

To reduce neurological stress I will take post op:
a. Fish oil.
b. Beta Glucans
c. IP6
d. Boswellia
e. Selenium (dosage, absorption??)
f. melatonin?? (I had been taking 3-5 mg nightly for the last 2 years)

Dosage suggestions? 120 lbs.

Our results showed that Se improved cerebrum and cerebellum MMI-induced damages in suckling rats. Moreover, we concluded that Se is an important neuroprotective element that may be used as a dietary supplement against brain impairments.
PMID: 19615434 [PubMed - as supplied by publisher]

Se supplementation significantly ameliorated all alterations induced by ICV-STZ in rats. Our study reveals that Se, as a powerful antioxidant, prevents cognitive deficits, oxidative damage and morphological changes in the ICV-STZ rats. Thus, it may have a therapeutic value for the treatment of SDAT.

Not exactly brain cancer or post op surgery but positive for neuro health.

5. There is a noscapine trial for multiple myelomo that is in the recruiting stage at Cornell Wiell. Something worth investigating. Possibly compassionate use. Seems to be low, if 0 toxicity. Beta glucan trials at MSKCC completed. Meeting them tomorrow at 9:30, I believe. http://www.cancer.go...o_CDR0000378186. Seems like all the Beta glucan cancer clinical trial research is being done at sloan.

6. Purchased a considerable amount of resv from board sponsor. Will probably take. Hopefully gets shipped soon or is shipped.
7. Of Indian descent--had considerable curcumin in diet for last 25 years. Will probably supplement curcumin post op.
8. 23andme test kit came in the mail today. Will try to ship it out tomorrow. Don't think I will find anything interesting there but whatever.
9. Vitamin c, e, etc. research tomorrow.
10. cryonics.

Tired,

f/R

Edited by garlicknots, 11 September 2009 - 06:42 AM.


#16 tham

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Posted 11 September 2009 - 08:02 PM

If you are taking selenium for general brain health support,
I think 800 mcg as Se-MSC should be good enough,

If you are taking it to fight brain cancer, go for at least 2,000 mcg
as sodium selenite.

Is your tumor benign or malignant, and if the latter, what kind of
cancer is it ?

#17 niner

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Posted 11 September 2009 - 08:36 PM

No one should obsess over "causes". Cancer just happens, much of the time. It's not your fault.

#18 tunt01

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Posted 11 September 2009 - 10:58 PM

best of luck to you in surgery/recovery.

you may want to consider the 'viral' angle, related to tumors. we know, for example, that HPV causes 99% of all the caners associated with cervical cancer and likely several other types of cancer. some believe that gliomas are caused by viruses like CMV or other herpes family viruses. my grandmother (who i never met) had a glioma at about age ~30, and my family seems to think it was probably due to a virus. you may want to take vitamin d (boosts immune system) and maybe some lysine (inhibits replication of some forms of herpesvirus).

ive read that a lot of causes of cancer today are due to migration of different people to different areas of the world. for example, an african with very dark skin living in canada (low sunlight) would get materially less sunlight than he is genetically wired to receive having come from africa. getting less sunlight (vitamin d) impairs this person's immune system far more than a caucasian in the same setting and puts him at a higher risk for developing cancer.

i'm not sure where you live, but a couple Indian guys I knew in New York City were radically vitamin D deficient, even tho most of NYC is deficient as a whole.

anyway just a thought; best wishes.

Edited by prophets, 11 September 2009 - 11:03 PM.


#19 Ben

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Posted 12 September 2009 - 12:10 PM

I wish I had something better to contribute other than my hopes that everything goes well for you. Please keep us updated on your progress.

Edited by Ben - Aus, 12 September 2009 - 12:11 PM.


#20 Ghostrider

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Posted 13 September 2009 - 03:46 PM

I wish I had something better to contribute other than my hopes that everything goes well for you. Please keep us updated on your progress.


I have a cousin who had a brain tumor which affected her pituitary gland. It was removed and she turned out fine, functions just as before. Personality did not change either. I hope you can quickly put this experience behind you and move on with your life after a few weeks.

#21 kismet

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Posted 13 September 2009 - 04:49 PM

9. Vitamin c, e, etc. research tomorrow.

When researching any interventions, you should focus on proven therapies and ignore most highly speculative stuff to save time and not kill yourself with supplements. There's really, really a world of difference there: in vitro <<<< animal research <<<< clinical/human evidence.

#22 Rational Madman

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Posted 14 September 2009 - 02:00 AM

9. Vitamin c, e, etc. research tomorrow.

When researching any interventions, you should focus on proven therapies and ignore most highly speculative stuff to save time and not kill yourself with supplements. There's really, really a world of difference there: in vitro <<<< animal research <<<< clinical/human evidence.

I'm curious, do you know how many fatalities can be directly linked to supplementation on an annual basis? Well, according to data collected over a 24 year period by the American Association of Poison Control Centers, there were only eleven reported cases of deaths resulting from vitamin toxicity.

While supplementation may lead to some health complications, there is simply not enough data to support your contention that there is a causal link to a higher mortality rate. However, like any potentially hazardous activity, I think one should tread carefully, but relative to the risks associated with other modalities, I see very little reason to be concerned about supplementation.

Supplementation is nowhere close to being a panacea, but there is enough evidence to suggest that the addition of nutritional supplements can positively influence a number of biomarkers, and help alleviate some symptoms that FDA approved treatments fail to completely address. So, as long as Garlicknots consults his doctor, and uses secondary treatments supported by an adequate amount of empirical evidence, I don't think there should be any problem.

-Just limit yourself to supplement companies that submit their products to independent review, or companies that have volunteered to subject themselves to FDA supervision.
-Maintain a limited, but powerful regimen.
-Be cognizant of contraindications and potentially harmful interactions.

Edited by Rol82, 15 September 2009 - 01:17 AM.


#23 Mortuorum

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Posted 14 September 2009 - 10:31 AM

9. Vitamin c, e, etc. research tomorrow.

When researching any interventions, you should focus on proven therapies and ignore most highly speculative stuff to save time and not kill yourself with supplements. There's really, really a world of difference there: in vitro <<<< animal research <<<< clinical/human evidence.

I'm curious, do you know how many fatalities can be directly linked to supplementation on an annual basis? Well, according to data collected over a 24 year period by the American Association of Poison Control Centers, there were only eleven reported cases of deaths resulting from vitamin toxicity.

While supplementation may lead to some health complications, there is simply not enough data to support your contention that there is a causal link to a higher mortality rate. However, like any potentially hazardous activity, I think one should tread carefully, but relative to the risks associated with other modalities, I see very little reason to be concerned about supplementation.

Supplementation is nowhere close to being a panacea, but there is enough evidence to suggest that the addition of nutritional supplements can positively influence a number of biomarkers, and help alleviate some symptoms that FDA approved treatments fail to completely address. So, as long as Garlicknots consults his doctor, and uses secondary treatments supported by an adequate amount of empirical evidence, I don't think there should be any problem.

-Just limit yourself to supplement companies that subject their products to independent review, or companies that have volunteered to subject themselves to FDA supervision.
-Maintain a limited, but powerful regimen.
-Be cognizant of contraindications and potentially harmful interactions.



I agree completely, "Rol82".

There are a varying degree and diverse variety of flaws revolving around conventional models and modalities of disease treatments as well as even prevention models. There are often complex motivational factors at work and science is hardly pure any longer, nor ethical, nor even '"science", unbiased and objective as it was ideally intended to be, alas.

Alternative therapies and modalities of disease treatment certainly merit and warrant critical perspective scrutiny and stringent standards which they are unfortunately themselves not subject to. However, statistics revolving around cure and successful "conventional" western medical recovery/treatment rates regarding much chronic, degenerative pathology and mortality are often forged, even outright lies perpetrated by drug and pharmaceutical corporate entities and this is not focused upon nearly enough. The fact is that western medicine is losing its' battles despite dubiously cloaked rhetoric, highly biased and manipulated models of erudition, science and scientific academic erudition is hardly devoid of corruption and such corporate monetary influences and it is clearly now defined and dictated by them as far as I am concerned. Indeed, it is far more profitable to enslave the sick unto multiple pharmaceuticals, perhaps elongating survival concerning certain degenerative illnesses but NOT propagating nor elongating a "high quality" of survival existence throughout that survival time (which is often ephemeral anyway, a few additional years of low grade life beyond the therapeutic model's application) in any way whatsoever.

I think western medicine's most actualized and successful achievements and attributes have largely revolved around trauma and emergency care, these technologies and statistics are by and large most impressive, ethical, efficacious, and inspiring to me personally and not most other aspects of western medicine's perspectives concerning models of disease, genealogy of diseased states, nor therapeutic models' constructs and designs, these are far less impressive and often downright misleading, profit-oriented, unethical, manifesting and resultant within the Iatrogenic bordering on genocide, the yearly statistics revolving around the Iatrogenesis in western medicine exceeds mortality statistics of prior World Wars and this is not conspiracy slander, these are facts but the news media ignores them, is oblivious for a variety of conscious and unconscious reasons. More profit is gained by and large by large corporate state mechanisms by insuring diseased and pathological states of mind and bodily functioning exist, evolve, flourish rather than the opposite, the more ignorant the mass populace is of this the better as well. There is far less $$$ to be gained through fostering modalities, protocols, and ethics of wellness and prevention, people leading, longer, less contaminated and subjugated pathologically, disease-free (emotional as well as physical) lives and for more decades is actually highly undesirable to our corporate state as it exists now. Academia by and large as well is exceedingly myopic and subject to these influences, governed and defined more and more by their dictates. I scientific research data is highly dubious and the biases are often very well veiled, tests are so constrained and manipulated, subjective to myriad myopia of design and application as well that it is not funny. Pushing dietary practices and the propagation of a food supply and choices oriented towards insuring that chronic and degenerative, profit-insuring disease states continue to manifest themselves is an industry connected to the propagation of other corporate industries as well, large multi-billion dollar food industries and pharmaceutical, medical therapy and treatment as well as insurance corporate industries all function symbiotically. Read this, it is hardly perfect but imbalance is existent far too prevalently in the diametrically opposed direction, even amongst supposedly alternative, more radical methodologies of approach, theory, application, etc.

This article has been criticized in portions by various purported "quackbuster" sources, many of whom are being brought into litigation as I write this for their own fraudulence and slander, paperwork's been served, their agendas are hardly wholesome themselves and are present mainly to serve threatened, unethical corporate interests, justice will hopefully actuate............


http://74.125.93.132...=google-coop-np

Edited by Mortuorum, 14 September 2009 - 10:33 AM.


#24 Skötkonung

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Posted 14 September 2009 - 06:06 PM

I would definitely be doing a ketogenic diet to slow the tumor growth.

Cancer cells get their energy, not like normal cells, from the mitochondrial oxidation of fat, but from glycolysis, the breakdown of glucose withing the cytoplasm (the liquid part of the cell).

This different metabolism of cancer cells that sets them apart from normal cells is called the Warburg effect. Warburg thought until his dying day that this difference is what causes cancer, and although it is true that people with elevated levels of insulin and glucose do develop more cancers, most scientists in the field don’t believe that the Warburg effect is the driving force behind the development of cancer. But it stands to reason that it can be used to treat cancer that is already growing. Since cancers can’t really get nourishment from anything but glucose, it stands to reason that cutting off this supply would, at the very least, slow down tumor growth, especially in aggressive, fast-growing cancers requiring a lot of glucose to fuel their rapid growth.



Thomas Seyfried (the same Thomas Seyfried mentioned in the article) has shown that ketogenic diets in animals and humans can stop malignant brain tumors. There is no reason to believe they wouldn’t work in humans as well.

A group in Germany is looking at such diets in a small pilot study. Patients are only admitted to the study when all standard therapies – chemotherapy, radiation, surgery, etc. – have failed and they have basically been sent home to die. In fact, a few were so far gone that they died within the first week of starting the study. You couldn’t ask for a study group more destined for failure, but, according to a Times article

The good news is that for five patients who were able to endure three months of carb-free eating, the results were positive: the patients stayed alive, their physical condition stabilized or improved and their tumors slowed or stopped growing, or shrunk.

So basically, start cutting those carbs.

#25 Gerald W. Gaston

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Posted 14 September 2009 - 06:10 PM

1. Scheduled for neurosurgery on Monday 9/14...


Well today is the day, and I'm sure that depending on their beliefs, everyone here is either hoping and/or praying that everything goes well for you.

4. Ketogenic diet...


Here is an article I happened on today that suggests a daily supplement of potassium citrate should be taken by ketogenic dieters to prevent kidney stones:

http://gazette.jhu.e...-high-fat-diet/

#26 mdma

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Posted 14 September 2009 - 10:22 PM

Looking for good news from the threadstarter, 25 is such an unusual age for a brain tumor.....i went to check myself not long ago to a doctor for 24\7 migraine that was persistant for over a month, the first thing he told me was that it was NOT a brain tumor since i was too young. I'm 25.....

Also i noticed he advised everyone to get an MRI, does such thing is possible in the US? Because over here i dont see anyway of just asking for an MRI for prevention( even tough i will definitely check into that.)

Good luck to the threadstarter and may this whole thing only stay as a bad episode so he can carry on with his life.

#27 tham

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Posted 15 September 2009 - 10:31 AM

If you have the rare genetic disorder NF2, you'd be growing
benign tumors continuously in your brain and along your spine
from your teens.

The main tumors tend to be on the 8th nerve (acoustic neuromas)
and the optic nerve, but they can grow anywhere on the
neurological system, particularly schwannomas along the spine.

http://en.wikipedia....matosis_type_II

http://www.theuniver...nf/aboutnf2.htm

http://www.dinagoldi...archive/nf2.htm


This 23-year old Malaysian girl with NF2, Yvonne Foong, whom
I correspond with occasionally, is deaf and blind in one eye.
The last I heard, she had no less then 3 tumors in her brain.

She went over to Good Samaritan Hospital in LA at the end of
last year for decompression of an optic nerve meningioma, then
twice earlier this year for gamma knife surgery of the same tumor
and another one on her olfactory groove.

She is rasing funds for further surgery.

http://www.yvonnefoo...out-the-author/

http://www.uiu.edu/g...pr09/Foong.html


Her older friend with the same disease, Lim Pei Lee, is
apparently doing worse.

http://www.yvonnefoo...lee-threatened/

http://translate.goo...e?h...=off&sa=G

Edited by tham, 15 September 2009 - 10:34 AM.


#28 castrensis

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Posted 16 September 2009 - 01:53 AM

Just catching up on board activity over the past couple days, thought I'd bring this over here from this thread as it seems a more appropriate place for the question to be addressed.

Any interesting results? Contraindications? I hope that I don't have to go on chemo/radiation therapy post surgery.


AFAIK for most solid cancers chemo/radiation is normally a must post surgery, if you want to minimize the chances of recurrence. Castrensis, what do you say?


This depends entirely on the cancer & its stage. Renal Cell Carcinoma is unresponsive to radio/chemotherapy & the primary means of management is to excise the kidney, its adrenal gland, all the lymph nodes, fascia & fat. Biotherapy (e.g. Interleukin-2, Alpha-interferon) is useful in some cases of RCC, but overall there is a poor response rate. Surgical intervention is the first-line treatment option in most skin cancers & in the case on non-melanoma skin cancers so long as clean margins can be attained with excision it's not typically recommended that folks follow up with chemo &/or radiation. A notable exception is in folks with diffuse actinic keratoses (a pre-cancer) is prophylactic treatment with topical 5-FU or Imiquimod to eliminate/reduce conversion to squamous cell carcinoma.

However, for primary CNS cancers it is almost universally considered essential to undergo whole brain radiation therapy (WBRT) & some form of chemotherapy (e.g. temozolomide) to entirely obliterate the cancer.

As a cautionary tale: I once took care of a person who discovered a lump on the left lateral abdomen about the size of a golf ball & underwent surgery to remove it & another mass that was found. Pathology reports identified it as liposarcoma with clean margins & it was suggested that this person undergo several cycles of chemotherapy to make certain any undetectable disease would be eradicated. This person was resistant to the idea because it would interfere with sailing their boat down the coast to Florida as the patient did every summer. Seeing as everyone was in agreement that we probably excised all the cancer this person made the decision to refuse further treatment & enjoy their boat & the summer. The following fall this person presented with back & abdominal pain & after a routine CT scan it was discovered that he had disseminated disease throughout his peritoneum & a mass on his left kidney. No longer a surgical candidate this person is now undergoing chemotherapy.

#29 kismet

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Posted 16 September 2009 - 06:52 PM

9. Vitamin c, e, etc. research tomorrow.

When researching any interventions, you should focus on proven therapies and ignore most highly speculative stuff to save time and not kill yourself with supplements. There's really, really a world of difference there: in vitro <<<< animal research <<<< clinical/human evidence.

I'm curious, do you know how many fatalities can be directly linked to supplementation on an annual basis? Well, according to data collected over a 24 year period by the American Association of Poison Control Centers, there were only eleven reported cases of deaths resulting from vitamin toxicity.

[*snip*]

TBH I'm bored by your fallacious response (e.g. starting with oft-rebutted statistics; the cochrane analysis alone found dozens or hundreds of unnecessary deaths from mega-doses of vitamins in their analysis of randomised controlled trials -- and then followed with a tu quoque of the kind "other modalities are even worse") and I find it is quite off-topic (this thread is not about the merrits of supplementation). I never tried to imply that supplementation is bad. :) But cancer supplementation, any cancer treatment, involves risks and, yes, it's easy, extremely easy, to harm yourself using supplements if you are clueless, even easier if you suffer from cancer. Grasping at straws kills people, because they waste time which should be invested into promising treatments. I am just telling people not to kill themselves, not to give up and dig their grave.

This is the most important part: in vitro <<<< animal research <<<< clinical/human evidence.

Edited by kismet, 16 September 2009 - 07:04 PM.


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#30 Rational Madman

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Posted 16 September 2009 - 09:51 PM

9. Vitamin c, e, etc. research tomorrow.

When researching any interventions, you should focus on proven therapies and ignore most highly speculative stuff to save time and not kill yourself with supplements. There's really, really a world of difference there: in vitro <<<< animal research <<<< clinical/human evidence.

I'm curious, do you know how many fatalities can be directly linked to supplementation on an annual basis? Well, according to data collected over a 24 year period by the American Association of Poison Control Centers, there were only eleven reported cases of deaths resulting from vitamin toxicity.

[*snip*]

TBH I'm bored by your fallacious response (e.g. starting with oft-rebutted statistics; the cochrane analysis alone found dozens or hundreds of unnecessary deaths from mega-doses of vitamins in their analysis of randomised controlled trials -- and then followed with a tu quoque of the kind "other modalities are even worse") and I find it is quite off-topic (this thread is not about the merrits of supplementation). I never tried to imply that supplementation is bad. :) But cancer supplementation, any cancer treatment, involves risks and, yes, it's easy, extremely easy, to harm yourself using supplements if you are clueless, even easier if you suffer from cancer. Grasping at straws kills people, because they waste time which should be invested into promising treatments. I am just telling people not to kill themselves, not to give up and dig their grave.

This is the most important part: in vitro <<<< animal research <<<< clinical/human evidence.


Well, let me recant, I suppose a review of 68 trials (of both short and long duration), where the average subject age was 62 years, and included enough unhealthy subjects to influence the findings constitutes a new and irrefutable methodological standard. These methodological flaws aside, the Cochrane review found increased mortality associated only with Vitamin E, Beta Carotene, and Vitamin A supplementation. Given the fat solubility of vitamins A and E, and the problems associated with alpha tocopherol supplementation, and assuming that the methodological flaws were not serious enough to significantly affect the outcome of the review, I think the findings are hardly revelatory. Since previous studies have not satisfactorily ruled out alternative explanations, and in some ways, are limited in scope, a strong causal link between supplementation and an increased risk of mortality, in my opinion, has not been established. Furthermore, even if the figures reported by the American Association of Poison Control are erroneous, there is still no evidence that the incidence of death related to vitamin toxicity is anything but rare. That was all I was trying to elucidate.

Since it's possible for supplements to be immunosuppresive, and induce oxidative stress, you're are quite right in suggesting that cancer patients should exercise caution with supplementation, and I apologize for misinterpreting your previous claim. But, I never suggested that megavitamin therapy should be a substitute for the most commonly prescribed cancer treatments, or that a patient should place themselves in peril by supplementing outside the supervision of a trained medical professional. On these points, we are in agreement.

Let me conclude by apologizing to the thread starter for starting an argument that needlessly distracted from what should be the focus of this thread: to provide helpful advice to equip him for his battle against cancer. Since my previous post was unfairly criticized, I felt compelled to respond. But, I have no intention of continuing this argument within the confines of this thread.

Edited by Rol82, 16 September 2009 - 09:57 PM.





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