Anaplastic Astrocytoma Grade 3

Hi Everyone,

My husband is considering starting Radiation/Chemotherapy combination to treat the Anaplastic Astrocytoma Grade 3 (located in right hemisphere) and I would like some feedback on your experience and suggestions for additional cocktails.

Here is a timeline and the current diagnosis:

• May 2001 - First craniotomy and at that time it was diagnosed as Astrocytoma Grade 2
• September  2013 - Second craniotomy and diagnosis as Anaplastic Oligoastrocytoma Grade 3
• August 2018 - Third craniotomy and diagnosis Anaplastic Astrocytoma Grade 3, IDH1 mutated, ATRX mutated, MGMT methylated, 1 P19Q no LOH detectable, proliferation index mib-1 to 10% 

He never wanted to do Radiation/Chemo due to concerns of long term effects, so after the second surgery, he had declined further treatment.  During this time he did not take any constant supplements but did do Ketogenic diet for about 2 years.  The concern was always not to have some side effects. 

He recently had another MRI check and it shows a further progression of the remaining tumor.  The biggest part of the tumor is located in an area where they cannot operate without causing handicap.  His left arm is already damaged and is showing signs of difficulty with walking (left leg) as the tumor is pressing on those fibers.

With all of your experience, I would like your feedback on where should we start.  I am reading other posts to come up with a list of possible supplements.

He is almost 40 and we live in Switzerland. 

Thank you for your feedback.

N

Oligo Treatment

Hello everyone,

In a couple weeks I'll be beginning proton radiation therapy. I have a basic cocktail and diet strategy for the 6 week treatment and I wanted to run it by this blog community while also asking a few questions.

My story so far:

Focal seizure in Oct 2018.

4.5cm mass, frontal/parietal, no contrast enhancement, everything else typical for an oligo.

Surgery late Dec. GTR, no visible tumor remains.

Pathology: Grade III oligo, with 10/10 HPF mitosis, dense cellularity, moderate atypia, no vascular proliferation, no necro.

TMB 6.8
IDH1 mut
TERT mut
CIC mut
1p19q codel
P53 retained
ATRX retained
MGMT methylated

Current plan is proton+TMZ then up to 12 cycles of TMZ.

Did 1 cycle of TMZ in between surgery and radiation start.

Cocktail

Keppra, 1g x 2
Longvida, 1.6g x 2
GTE 1g (450mg egcg) x 2
PSK 1.5g x 2
Maitake, 50mg x 2
CBD  (don't have it yet, still considering dosage)
Omega-3 3g (total EPA+DHA)
Pterstilbene 150mg x2
Resveratrol 250mg x2
D3 5000 IU x2
Berberine, 600mg x3
Silymarin, 450mg x3
Probiotics via yogurt or pills (occasional, can reduce gut diversity?)
Selenium 200mcg
Melatonin, 10-20mg
Magnesium, ~200-300mg

Still trying to get
Celebrex
Chloroquine

Ketogenic diet rough plan
72h fast 3 days prior
Protein under 65g, carbs under 20g and GKI as close to 1 as possible.
1000cal per day, possible 20:4 intermittent fasts 3 days per week, alternating

Lots of walking and probably very light but consistent exercise throughout.

Questions

1) Will any of these supplements (antioxidants specifically) potentially interfere with oxidative stress on the tumor cells?

2)The majority of this cocktail and diet plan is ripped from GBM research and GBM/AA3 posts on here. Are there IDHmt/oligo specific supplements/drugs etc that I may be missing?

3) I've heard GTE can be toxic. I have Nusapure GTE and Swanson's Teavigo caps as well. What are people on here buying for EGCG?

4) Is chloroquine as promising to an oligo as it is to a GBM?

5) Is cal restriction necessary if I were regularly fasting, and vice versa? This is a bit of a grey area that I don't quite have figured out yet.

Also, as of now, I intend to save PC chemo for future recurrences. TMZ is a much less damaging chemo. My main concern with TMZ, however, is hypermutation. I'm not sure how to possibly mitigate that.

Thanks in advance.

Cocktail Supplements when Pregnant

My wife has a Grade 3 anaplastic astrocytoma. We had just started on the cocktail approach when we realised that she was pregnant!

So my question is whether anybody has been in a similar situation or come across any information/research on whether cocktail supplements/drugs are fine to have during pregnancy?

We will probably err on the side of caution and not having anything during the first trimester, but if there is reasonable evidence that particular supplements/drugs are OK for pregnancy, we are hoping to restart at least a few of these supplements after the first trimester.

Here is the list of supplements/drugs that my wife had started having. I have bucketed it up into “Unsure” and “Probably OK” (self-explanatory).

Unsure

·         Reishi
·         Maitake
·         Turkey Tail
·         Shiitake
·         Curcumin
·         Zinc
·         Selenium
·         Green tea – I think high quantities is not recommended because of caffeine content

Probably OK:

·         Vitamin D3 (part of pregnancy multivitamins)
·         Fish oil (part of pregnancy multivitamins)

In Australia, there is a Therapeutic Goods Administration guide to drugs for pregnancy, but the guide doesn’t really contain the natural supplements and drugs.

Any guidance or help would be much appreciated!

P.S. It doesn’t help that most of the packaging has generic statements such as “If you are pregnant, we advise you consult your doctor before taking this supplement”…

Nicola Goodwin AA3 - my cocktail

Nicola Goodwin - my cocktail.

Anaplastic Astrocytoma diagnosed following large biopsy Feb 2014 followed by 6 weeks radio with temodar then 6 months of temodar. Enhancing part of tumour removed, some low grade remains, I'm in the UK and prescription meds are not easy to obtain, my only medication is 500g Keppra taken twice a day.

My cocktail;

Morning before food;
1000mg longvida curcumin
1200mg reishi mushroom
2000mg Omega 3 Fish Oil
1000mg resveratol
275mg EGCG
75mg Aspirin
250mg Sensoril (Ashwagandha)

Morning after food;
500mg Berberine
50mg Pterostilbene
50mg Zinc
10,000iu Vit D3

Evening before food;
EGCG

Evening after food;
500mg Berberine
50mg Pterostilbene
 20mg melatonin before bed, unbelievably this is illegal in UK




Last 3 scans have been stable, any ideas or thoughts on my cocktail greatly appreciated 😊