77 replies to this topic

[yoyo]

maybe some supp affecting glutamate since glutamate excitotoxicity seems to be how gliomas make room for growth

[Lufega]

maybe some supp affecting glutamate since glutamate excitotoxicity seems to be how gliomas make room for growth

Most if not all GABAergics lower glutamate.

[Ioana]

I feel that I have very little to offer (well, in terms of advice and various scientifically oriented suggestions) other than my condolences for such a shocking discovery for someone so young, and considering the knowledge you seem to have of your own well-being, such an odd candidate for something like this. I read this thread on the 14th and it has actually been bothering me to at least transmit an electronic word of hope, and empathy, that such a thing could happen to you! I hope to hear some good news when you are sufficiently above water to post here.

very sincerely, I wish you only the best in your recovery, or whatever may come next.

~Ioana

[garlicknots]

Thanks for all the good wishes, they meant a lot.

I came out of it OK. I had edema for about 1-1.5 weeks. I had a stage 3 glioma--kind of sucks since after the frozen section they had told me I had a stage 2/low grade glioma. That said, they had told me that I showed signs of 2/3 beforehand.

Ok. Next. I'm at 99% language ability however the last 1% is elusive. For that, I am thankful since the surgery was in the frontal left lobe. The surgeon implies that he got all of it save for microscopic fragments. That said, due to the pathology report I'll have to get radiation therapy. Fuck. I'm going to show it to the pathologist at MSKCC (I had showed it at Cornell Weill)

There are clinical trials for Antineoplastons for gliomas at the Burzyinski clinic in Houston, thoughts? There isn't enough information online for them. The website is also not that clear, however the trials are stage 3. Also, other conventional therapies indicate radiation therapy, particularly stereotactic radiation. Whether or not that will be successful in one set is a crap shot.

I'm going to keep taking vitamins, minerals until someone tells me I shouldn't. I'll take them with my doctors advice, of course.

Woohoo, I am alive!

f/R

[tunt01]

maybe try to find someone at MD Anderson in Houston for a reference on Burzysinki. you probably know how well respected md anderson is in cancer treatment... someone there would know this burzyinski guy prolly. just call them cold, even if u can't find a referral. find someone at MD who does glioma or head/neck cancer.

btw glad to hear u came thru so well. we are pulling for ya!

Edited by prophets, 30 September 2009 - 05:03 PM.

[tham]

Scutellaria baicalensis, which I have been urging Zawy's
friend to try for his NSCLC all along.

http://www.ncbi.nlm....l=pubmed_docsum


http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

[alexd]

Glad you got through the operation.

Two suggestions. If anyone knows more about this please add it in.

Due to the fact that a friend of mine recently died of cancer I am up on the subject. Look into taking Resveratrol along with the radiation therapy. Google it, and search here. It seemed that it made the cancer cells more susceptible and the normal cells more resistant to radiation therapy. It was reported at a large clinic.

There have been reports that modafinil (provigil ) has been useful against the "brain fog" effects of chemo/rad. At the very worst it will increase your concentration and memory. Tons of info here in nootropics. Ask your Dr. for samples of Nuvigil. This is the new longer lasting version from Cephalon. They are pushing this. Generic provigil should be available in the usa in 2012. There are some sources in Canada but honestly I am not inclined to divulge that here, since in case their sending it to me goes against US law, the last thing I want to do is draw attetnion to it. Sorry guys. So you would have to contact me directly and swear not to talk or else I would have to send the elves after you. These are the same underpants stealing elves that were once featured on an episode of South Park. They also reveal hoarding all the missing socks. Currently those very same elves have taken up residence along with me and my wife and they are scarring the bejusus out of the cats! So you better listen! Did I mention Provigil makes you talk about irreverant cartoon shows?

Actually it is an interesting smart drug drug that has it's uses.

Good luck

[tham]

Salirasib, K-ras and mTOR inhibitor.

http://www.concordiapharma.com


http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

Edited by tham, 01 October 2009 - 07:07 PM.

[Jay]

That's great news!! I was really hoping you would make it. If I were you I would look into everything you can (but try not to completely stress yourself out) and try to pick a number of things that won't kill you that are likely to help (at least a little) avoid a recurrence. Obviously, conventional medicine comes first. After that, I would pick a number of reasonably safe things (in wide use) to try that have a reasonable chance of helping you to avoid a recurrence. On the top of my list would be: 1. Ketogenic diet 2. Marijuana (also known to relieve stress) 3. Vitamin D and 4. IP-6. There are no doubt dozens of things that can help, so just keep reading and use good judgement.

Edited by Jay, 01 October 2009 - 08:40 PM.

[lunarsolarpower]

If you have to do radiation would proton therapy count?

[Jay]

From science daily today -- chemo alone as good as radiation alone, which is as good as the combo. http://www.scienceda...91001091759.htm

Edited by Jay, 02 October 2009 - 12:24 PM.

[DiamonDie]

Low dose naltrexone (LDN) might be something to consider for immunotherapy. There are no studies of LDN in brain cancers, only published reports in e.g. lymphoma and pancreatic cancer, but there are anecdotal reports of it working in glioma and there is a wealth of in vivo research supporting the validity of its mode of action (http://www.fiikus.net/?ldnrefs).

LDN is safe, inexpensive and does not diminish the efficacy of any other treatments or supplements except for opioid painkillers, so I'd definitely look into it.

Good luck. Whatever you decide to do, I hope everything will go well.

[garlicknots]

From science daily today -- chemo alone as good as radiation alone, which is as good as the combo. http://www.scienceda...91001091759.htm

I don't understand proton theory.

Hmm, I will talk to my neuro oncologist about LDN soon. However I don't understand this:

Differential effects of methionine enkephalin on the growth of brain tumor cells.
Lee YS, Wurster RD.

Department of Neurological Surgery, Loyola University Medical Center, Maywood, IL 60153.

The effect of methionine enkephalin on the growth of human brain tumor cells was investigated. The results show that this endogenous opioid has dual effects on tumor cell growth. This peptide exerted an inhibitory effect in SK-N-MC human neuroblastoma cell line; in contrast, in U-373 MG human astrocytoma cell line, the peptide showed a stimulatory effect. Treatment with naltrexone, an opioid receptor antagonist, also resulted in a similar alteration of tumor cell growth implicating that its action may be unrelated to opioid receptor blockade. These results suggest that in these tumor cell lines endogenous opioid systems may be involved in cell proliferation. Furthermore, these tumor cell lines may be useful model systems for the study of the signal transduction mechanisms of endogenous opioids.

PMID: 7815100

Does low dose naltrexone also stimulate U-373 MG human astrocytoma cell lines? Do I have a U-373 cell line?

Earlier today I met with a family friend who was an oncologist. She flew from Dallas to NY just to see me. She also suffered from breast cancer last year and went on chemo. She advised against all forms of alternative treatments including supplements and the like. Stick to conventional treatments that were proven by double blind randomized clinical trials. Straight burn and poison kind of gal. Suffice to say, that didn't really make me too happy.

There are a few problems with maintaining ketosis:
1) Some (many) supplements have carbs. Those carbs add up. For example, IP6 at the dose I take has nearly 5g of carbs. Are these carbs ok? The low carb diets that are in clinical trials for cancer indicate something like ~20 g for carb intake. For my weight that would be about ~15g.

2) What about "cancer fighting" foods such as carrots, poms, etc. For poms and other fruits those carbs are pretty much all sugars. When the cancer cell gobbles up the sugars, it surely ingests some cancer fighting nutrients too? Especially if I do a glucose fast for say half the day.

Here is my pathology report, thoughts?:

Anaplastic Astrocytoma, WHO grade III

Comment: The tumor is composed of a cellular, pleomorphic population of astrocytes with easily identifiable mitotic figures. No necrosis or endothelial profileration is seen. The tumor cells are positive for GFAP. The profileration is seen. The tumor cells are positive for GFAP. The proliferation index is 10% in the highest area (Ki-67). P53 stains approximately 50% of the neoplastic nuclei. PTEN is weakly preserved diffusely and EGFR is negative.

I understand most of that. Some are positive, some are negative. Oh well.

Soon, I plan to get more tests run such as 1p/19q codeletion, MGMT expression, cell line, etc. Those are fairly strong prognostic indicators as to whether temodar will work. I also plan to find out whether those slides were representative of my fairly large tumor since the frozen section and MRI indicated low grade gliomas. A pathologist around?

My NO has advised the standard radiation/temodar treatment. Hell I signed up for a temodar clinical trial that takes the 5/23 cycle and modifies it to either daily or 1 week on/1 week off per some randomization. My radiation is scheduled to start next Friday with temodar the day before. I am not very happy about that. There is a major neuro oncology conference later this month, perhaps new clinical trials will be announced. I am debating whether I should wait until then.

Dr. Burzynski will be on Larry King Live on Monday 10/19 along with a few other people in the cancer business.

My supplement list is attached along with doses. There are some other things that I've added of late like meeker red raspberry powder.

[tunt01]

i tried to read a bit about your pathology. i'm not sure i understand (or if anyone understands) the cascade that causes this seemingly upregulated GFAP to turn cancerous. Do you think it is hormonal, genetic? etc. Is there family history with this? Do you think it is due to an exposure of some kind?

i glanced a few papers on pubmed.com, worth poking around if you have not already.

[garlicknots]

i tried to read a bit about your pathology. i'm not sure i understand (or if anyone understands) the cascade that causes this seemingly upregulated GFAP to turn cancerous. Do you think it is hormonal, genetic? etc. Is there family history with this? Do you think it is due to an exposure of some kind?

i glanced a few papers on pubmed.com, worth poking around if you have not already.

Done a fair share of poking around pubmed, right now I've exhausted it before I get back any additional immunohistochemistry, markers, etc. from the pathologist. Getting a bit of a run around there.

Most of the supplements I am taking have shown fairly strong reactions to anaplastic astrocytoma cell lines either in vivo and when not possible in vitro. For some of them, there are clinical trials in the work with malignant gliomas. Unfortunately, for some of them I'm not sure if they pass the blood brain barrier (if the studies were just in vitro). For some of them I know that they don't, but I don't want the tumor metasizing, though I guess that is unlikely for a brain tumor because of the blood brain barrier.

Frankly, I think it may have to do with some of my past drug use + a poor college diet at the time. The location of the tumor also interested me--left frontal lobe, cognition, etc. I may have also had mercury exposure during my time in Mongolia but that seems less likely since it was only 2 summers/falls. Whenever I've asked my NOs what may have caused it they tell me not to worry about it "these things happen". Unfortunately that doesn't really help me if I'm currently still exposed to those substances.

[tunt01]

the mongolia aspect and exposure possibility ran through my mind also. there is a lot of evidence of chemical dumping throughout china and "cancer pools" showing up in certain villages. i've personally thought about moving to asia for a while, but the quality of life risk (water/food) tradeoff is something that weighs on my mind.

[Jay]

Although it is a carbohydrate, IP-6 (phytic acid) lowers blood glucose in rats - see this and this. I guess it's possible that IP-6 could lower blood glucose in rats (and, thus, maybe people) that are not anywhere near ketosis, while having the opposite effect if near ketosis. I don't know.

Edited by Jay, 19 October 2009 - 11:18 PM.

[Invariant]

Hi Garlicknots,

How are you now? Hope you're doing good.

I found some studies relating piracetam (which you mentioned in your first post) and brain cancer.

link

J Cancer Res Clin Oncol. 1979 Sep;95(1):11-8.
Antineoplastic activity of drugs affecting the central nervous system against chemically induced tumors in the rat (author's transl) [Article in German]
von Metzler A.

Piracetam and Pyrithioxin, drugs affecting the central nervous system, prolonged survival times in rats with the 3-MC sarcoma. Tumor remissions were observed in several male animals. We were able to achieve a high survival rate without metastasis after surgical removal of the tumors. The remission rate could be increased 6-fold when Piracetam was combined with Cyclophosphamid. In this group male and female animals reacted in the same manner. When used prophylactically, Piracetam proved to be more effective than Pyrithioxin. The effectiveness of Piracetam depended on the onset of treatment. Tumor remission was significant 28 weeks following 3-MC injection when 3-MC and Piracetam were given simultaneously. A remarkable increase of the tumor rate ensued when medication was discontinued. The tumor rate decreased to less than 50% 36 weeks following 3-MC injection if treatment was started 8 weeks following 3-MC application. The latter applied only to Piracetam and not to Pyrithioxin. In the EEG of rats the diminished amplitude induced by 3-MC could be fully compensated by 100 mg/kg Piracetam. All animals treated in this manner for 7 months remained tumor-free.

PMID: 500765

link

Srp Arh Celok Lek. 1994 May-Jun;122(5-6):149-51.
Monoamines stimulations in experimental carcinogenesis
[Article in Serbian] Popov I, Spuzić I, Rakić Lj.

Facts about the role of CNS monoamines in cancerogenesis have been accumulated for many years. The aim of the present study was to investigate the effect of interaction of psychoactive drug (Piracetam) and other treatments on survival time of tumour-bearing rats. 138 Wistar rats were used in the experiment. The animals were injected 1% 3--Methilcholantren suspension in 10% Tylose, s.c. under the dorsal skin of the neck in a dose of 3 mg/animal. Within 4-9 months after a single injection, the rats developed tumours at the site of injection. The surgical removal was performed when tumours reached the size of 1-3 cm. After surgical extirpation of tumours different groups of animals were treated by cyclophosphamide (s.c. one-time dose of 50 mg/kg for female and 100 mg/kg for male) or by psychoactive drug (Piracetam) administrated by GE tube 5 time/week, 100 mg/kg. Autopsy and histological examinations were carried out in all animals. Survival time (> 120 days) was the greatest in group B (Piracetam, after surgical removal of tumours) 81.2%, and group C (Cyclophosphamid, after surgical removal of tumours) 68.8% and in group A (only surgical removal of tumours) 50%. In group B the incidence of metastases was the smallest (87.1% of animals were without metastases), compared with group C (45.4% of animals were without metastases) and group A (27.3% of animals were without metastases). The diference is statistically significant. The mechanism of antineoplastic effect of Piracetam consisted of the interaction of influences both on metabolism of the Central nervous system and the tumour. Probably, it is the neurotransmitter modulation that had its effect on carcinogenesis not only by regulation/disregulation of brain homeostasis, but also via direct effect on intracellular processes during cell development and differentation.

PMID: 17977413

[sentrysnipe]

Definitely a great job of you looking into glucan. I am so glad you got through the operation, but a bit disappointed with your orthodox oncologist friend.

Beta 1,3 / 1,6 Glucan (or 1-->3 1-->6,D) should be on top of your supp list. May I ask which brand you are taking? Transfer Point and other brands that use the Wellmune WGP (whole glucan particulate) patented extraction are fine (e.g., life source. Jarrow used to carry glucan products with the biothera molecule but not anymore). This has to be taken long term 6 - 12 mos or more, in high doses. I posted a matrix link of the suggested dosage per weight a while back in other threads.
edit: http://purehealthsys...can-dosage.html
http://purehealthsys...a-glucan-2.html

As regards your carb inquiry, Beta Glucan is a complex carb (polysaccharide), and may delay glucose uptake, much like most polysaccharides.

A couple of anecdotes from cancer survivors: http://www.iherb.com...ules/11128?at=1

And some studies:

Oral is as effective as intraperitoneal injection (not iv)
http://glucan.us/Vet...GlucanStudy.pdf

A Comparison of Injected and Orally Administered B-glucans

JANA Vol. 11, No.1, 2008

"B-glucans have been extensively studied for their pharmacological effects. Despite in-depth research, little is known about the optimal dose and/or optimal route of application. In this paper, we are reporting the result of comparing the immunostimulating activities of four commercially available glucans differing both in their solubility and source. In addition, we compared intraperitoneal and oral application, and the differences between a single versus repeated doses."

http://www.transferp...007-Hilites.pdf

An Evaluation of the Immunological Activities of Commercially Available β1, 3-Glucans

JANA Vol. 10, No. 1, 2007

"B1,3-glucan’s role as a biologically active immunomodulator has been well documented for over 40 years. Interest in the immunomodulatory properties of polysaccharides was initially raised after experiments showing that a crude yeast cell preparation stimulated macrophages via activation of the complement system. Further work identified the immunomodulatory active component as B1,3-glucan. Numerous studies (currently more than 1,600 publications) have subsequently shown that B1,3-glucan, either particulate or soluble, exhibit immunostimulating properties, including antibacterial and anti-tumor activities. Despite extensive investigations, no consensus on the source, size and other biochemical or physicochemical properties of B1,3-glucan has been achieved."

There has been an outpouring of knowledge shared in this thread.

"PectaSol" another polysaccharide (seems to have a pattern here for cell membrane receptors) may also help:
http://www.cancer.or...sp?sitearea=ETO
http://www.lef.org/m...xicities_01.htm

It is very expensive though.

Beyond that, perhaps you may also try meditation (it *probably* helps!), visualization techniques down to the cellular level and visualize yourself healing using this close to accurate biothera MoA:

Somehow biothera deleted the cancer portion of the animation, so this rather blatant ripoff of the biothera clip by Transfer Point will do for now. (around mark 1:38)

Keep us posted!

Edited by sentrysnipe, 18 December 2009 - 10:35 PM.

[garlicknots]

Hi Garlicknots,

How are you now? Hope you're doing good.

I found some studies relating piracetam (which you mentioned in your first post) and brain cancer.

link

J Cancer Res Clin Oncol. 1979 Sep;95(1):11-8.
Antineoplastic activity of drugs affecting the central nervous system against chemically induced tumors in the rat (author's transl) [Article in German]
von Metzler A.

Piracetam and Pyrithioxin, drugs affecting the central nervous system, prolonged survival times in rats with the 3-MC sarcoma. Tumor remissions were observed in several male animals. We were able to achieve a high survival rate without metastasis after surgical removal of the tumors. The remission rate could be increased 6-fold when Piracetam was combined with Cyclophosphamid. In this group male and female animals reacted in the same manner. When used prophylactically, Piracetam proved to be more effective than Pyrithioxin. The effectiveness of Piracetam depended on the onset of treatment. Tumor remission was significant 28 weeks following 3-MC injection when 3-MC and Piracetam were given simultaneously. A remarkable increase of the tumor rate ensued when medication was discontinued. The tumor rate decreased to less than 50% 36 weeks following 3-MC injection if treatment was started 8 weeks following 3-MC application. The latter applied only to Piracetam and not to Pyrithioxin. In the EEG of rats the diminished amplitude induced by 3-MC could be fully compensated by 100 mg/kg Piracetam. All animals treated in this manner for 7 months remained tumor-free.

PMID: 500765

link

Srp Arh Celok Lek. 1994 May-Jun;122(5-6):149-51.
Monoamines stimulations in experimental carcinogenesis
[Article in Serbian] Popov I, Spuzić I, Rakić Lj.

Facts about the role of CNS monoamines in cancerogenesis have been accumulated for many years. The aim of the present study was to investigate the effect of interaction of psychoactive drug (Piracetam) and other treatments on survival time of tumour-bearing rats. 138 Wistar rats were used in the experiment. The animals were injected 1% 3--Methilcholantren suspension in 10% Tylose, s.c. under the dorsal skin of the neck in a dose of 3 mg/animal. Within 4-9 months after a single injection, the rats developed tumours at the site of injection. The surgical removal was performed when tumours reached the size of 1-3 cm. After surgical extirpation of tumours different groups of animals were treated by cyclophosphamide (s.c. one-time dose of 50 mg/kg for female and 100 mg/kg for male) or by psychoactive drug (Piracetam) administrated by GE tube 5 time/week, 100 mg/kg. Autopsy and histological examinations were carried out in all animals. Survival time (> 120 days) was the greatest in group B (Piracetam, after surgical removal of tumours) 81.2%, and group C (Cyclophosphamid, after surgical removal of tumours) 68.8% and in group A (only surgical removal of tumours) 50%. In group B the incidence of metastases was the smallest (87.1% of animals were without metastases), compared with group C (45.4% of animals were without metastases) and group A (27.3% of animals were without metastases). The diference is statistically significant. The mechanism of antineoplastic effect of Piracetam consisted of the interaction of influences both on metabolism of the Central nervous system and the tumour. Probably, it is the neurotransmitter modulation that had its effect on carcinogenesis not only by regulation/disregulation of brain homeostasis, but also via direct effect on intracellular processes during cell development and differentation.

PMID: 17977413

Wow thank you for the information. I must have used the wrong search terms when looking up piractem and tumors. Those results jive with my own experiences. Likely carcinogensis occurred prior to starting piractem (perhaps by 2-3 years) and it helped delay tumorgenesis and presentation. Then not taking any for 2-3 weeks could have lead to indication and the seizure. I've been taking aniracetam on/off too since I left my piracetam in Mongolia.

I'm going this pass it along to a BT yahoo group. Many of us are currently using levitracetam to control possible future seizures.

Yes, I use the transfer point beta glucan. I'm only 50 kg so I take 2-3/day. Later I will upload my current supplement list and doses.

In other news--I had an MRI yesterday (11 days after radiation, IMRT not proton beam--wish I had read the oct 2nd post here, damn, I could have gone to mass gen)--and it was negative for growth. Going to do another MRI in a month. Hope it continues to be negative.

Will provide more information later.

f/R

[Mind]

Thanks for all the information. Keep us up to date.

We are all pulling for you.

[tunt01]

great news. best wishes.

[palindromic]

This is fantastic Garlicknots, we are all pulling for you!

[FunkOdyssey]

Definitely eager to take a look at what you are taking for supplements. Did you ever adopt a ketogenic diet? Of all dietary/supplemental interventions vs. brain tumor that would be most promising in my mind.

[rwac]

It's good news that the tumor is not growing. Best wishes, and keep us informed.

[ppp]

It's good news that the tumor is not growing. Best wishes, and keep us informed.

Seconded!

[kismet]

Why are you wasting your time with in vitro results?! What does your 'orthodox' oncologist or any other oncology expert say about that method? The issue is that lots of stuff that works well in vitro may be actually harmful in vivo. I really hope the in vitro stuff is at least backed up by very, very strong in vivo safety data, otherwise you're gambling with your life IMHO.

It's good news that the tumor is not growing. Best wishes, and keep us informed.

Not necessarily (unfortunately). That depends on the individual tumor and assessment by an expert (please ask your oncologist and tell us if this is indicative of 'success' or expected from tumor growth kinetics at this stage...) Any assessment by us laymen is probably worthless.

Edited by kismet, 22 December 2009 - 10:19 PM.

[Jay]

Why are you wasting your time with in vitro results?! What does your 'orthodox' oncologist or any other oncology expert say about that method? The issue is that lots of stuff that works well in vitro may be actually harmful in vivo. I really hope the in vitro stuff is at least backed up by very, very strong in vivo safety data, otherwise you're gambling with your life IMHO.

What in vitro results are you referring to? Beta glucans?

[HaloTeK]

Here are the 5 things I would do in order:

1. Try not to stress out and remind myself that I need to relax.
2. Get plenty of sleep.
3. Make sure my vitamin D levels are up to par.
4. Eat tons of raw varied veggies, some fruit, small fatty fish, organs like liver once a week (for retinol).
5. Eat "real" young coconuts (not coconut oil). They will help your body to rely on ketones for fuel even if you are eating some carbs <--- upwards of 20-40% of calories in your diet.

So basically, you are eating around 2 pounds of raw veggies, 1 pound of berries/fruit, fatty fish (your cutting out red meat and chicken for now), eating things like sweet potatoes and coconuts. If you don't get better on this type of plan -- go for standard chemical treatments.

Edited by HaloTeK, 24 December 2009 - 12:05 AM.

[garlicknots]

Here are the 5 things I would do in order:

1. Try not to stress out and remind myself that I need to relax.
2. Get plenty of sleep.
3. Make sure my vitamin D levels are up to par.
4. Eat tons of raw varied veggies, some fruit, small fatty fish, organs like liver once a week (for retinol).
5. Eat "real" young coconuts (not coconut oil). They will help your body to rely on ketones for fuel even if you are eating some carbs <--- upwards of 20-40% of calories in your diet.

So basically, you are eating around 2 pounds of raw veggies, 1 pound of berries/fruit, fatty fish (your cutting out red meat and chicken for now), eating things like sweet potatoes and coconuts. If you don't get better on this type of plan -- go for standard chemical treatments.

Kismet, for brain tumors there are 3, and only 3, chemo treatments that have been FDA approved: That is to say, clinically proven. Gilidael wafers (1970s), Temolozimide (late 1990s), and Avastin (2008/2009). This, I hope, doesn't get into a discussion of the FDA approval process/clinical trial but that isn't really acceptable for BT patients. There are a lot of promising treatments between Novocure, DC-VAX, Magforce, etc. that are in various stages of FDA/EU approval right now for recurrent GBM. Maybe in 2 years I'll have access to those. (That is unless I become a recurrent GBM case which I certainly don't want to become).

Average PFS (progression free survival) times for Anaplastic Astrocytomas are about 1.5 years including all those treatments and more off label. 1.5 years is not an acceptable number for me (or for my oncologist thankfully). Of course the 1.5 number has been getting better of late. One problem is data collection, there are only about 650 AAIIIs diagnosed in the USA/year so that the sample set is small. I found this recent article—http://jco.ascopubs..../27/35/5861.pdf. It was written by Lisa D. Angeles, head of neurooncology at MSKCC. (I get treated by another NO at MSKCC) The interesting point is on the 2nd page:

Close examination of the results reveals that initial treatment selection may matter. Median progression-free survival, a secondary endpoint, was also similar between treatment groups, although the data suggest that time to progression after RT maybe longer than after chemotherapy ; at 54 months follow-up, 77.8% of patients had completed salvage RT, whereas only 48% had completed salvage chemotherapy. Furthermore, initial RT yielded more complete responses, partial responses ,and stable disease than did initial chemotherapy suggesting superiority of RT. It is not clear whether failure of chemotherapy was more rapid in the astrocytoma than the oligodendroglioma group.

54 months, 50% didn't receive further treatment. 5.5 years, those are numbers I can work with.

edit: By the way, 54 months included mixed oligodendroglioma so it isn't as promising as I'd like it to be.

Funk, as far as ketosis goes, I've been in “small” ketosis per Ketostix since Octoberish. Like I mentioned before, I've been taking a decent amount of “high” nutrition carb foods like IP6, Cacoa, Berry concentrates and of course veggies like broccoli, garlic, onions, etc. My fasting blood glucose level hovers around 75. My non fasting glucose levels are about 80-90. That included 6 weeks of radiation, many days when I was on the glucosteriod decadron (and then switched to boswellia).

Some members of BT groups have spoken to Dr. Seyfried, the lead researcher on the Calorie Restricted Ketogenic Diet study in Boston. He implied that the reduction in reoccurrence and progression was less related to ketosis than it was to the CR part of the diet. Since I was receiving radiation, I was constantly hungry and couldn't really do CR without compromising my health. Anyway, I may break ketosis this Saturday and do that FAST FOOD extravaganza day that I missed out on for 2-3 years in Mongolia. I need a McDonald's Filet o Fish from a mental standpoint. Then fast 1 day and see if I can't get back into ketosis, I will also try to do some CR but I feel like it will be very difficult since my cal intake is well above 1000-1250 right now. Maybe after the tiredness from radiation begins to wear off, I will cycle through a CR period for 1 month. Cycle through 1 month of berries, etc. I think cycling through “alternative”diet modalities is probably a good idea. There will, of course, be some constants in my diet.

I alternate between 5000 and 10000 Vit D3. I should get my blood tested for vit d3 levels and crp again. In my most recent blood test I had relatively low wbc. That was worrying.

Halo: Hmm, there aren't too many websites that sell young coconuts, I do live in NYC now so I'll take a walk around some of the Asian and Mexican markets.

I provided the lay perspective when I said “good”: there was marked reduction in contrast enhancement (which at 11 days after radiation is pretty good per my doctor), my original resection was “very good” per my current NO, RO and they are talking about a NS from another institution (cornell weill), there was, relative, to other patients very little necrosis per my NO, he actually said “no necrosis” which I promptly corrected (This was my biggest concern with RT). That said, I have another MRI scheduled in about 3 weeks. That one will be more telling. I will compile a fairly long list of questions for that consult. I will have the recent MRI sent to the UCLA brain tumor center so they can review it also, they've reviewed my other stuff and generally concur with my current NO. Just got the CD today.

During this recent MRI I had induced hyperventilation to increase contrast enhancement so that marked reduction might be better than the doctor had originally thought. I don't know. This abstract made me choose hyperventilation. My RO (a very very evidence based, clinical trial gal) agreed that there was a lot of research and theory behind this method but since there was no clinical trial yet, it wouldn't serve any purpose for me to do it. I very much went against that. My NO is rather better on the whole clinical trial thing which is good considering the numbers.

The use of hyperventilation in contrast-enhanced MR of brain tumors.
Pronin IN, Holodny AI, Kornienko VN, Petraikin AV, Golovanov AV, Lee HJ.
Department of Radiology, Burdenko Institute of Neurosurgery, Moscow, Russia.
Angiographic studies have demonstrated improved visibility of glial tumors after hyperventilation. The present study was undertaken to determine whether hyperventilation would change the MR enhancement characteristics of various glial tumors. Eighteen patients were studied twice: once with standard contrast-enhanced MR imaging and again with standard imaging plus hyperventilation. After hyperventilation, six low-grade astrocytomas showed no change and three showed a small decrease in relative enhancement (<10%). The ependymomas showed a 10% to 13% increase in the degree of enhancement, but no change in the area of enhancement. All the anaplastic astrocytomas showed an increase in the degree of enhancement (mean, 38%). Three of the anaplastic astrocytomas showed new foci of enhancement that were not seen on the nonhyperventilation study. Hyperventilation appears to be an inexpensive and safe method for increasing the conspicuity of abnormal areas of the blood-brain barrier.

Link for hyperventilation study, I have full study somewhere

Happy holidays, etc.

f/R

Edited by garlicknots, 25 December 2009 - 05:48 AM.