Wednesday 19 June 2019

Boswellia during radiation


Hi Stephen/others,

Do you think it is a bad idea to use Boswellia during radiation? -  A week ago I started Boswellia Serrata Extract (Wokvel) 333mg three times a day after having a seizure on radiation day #11 out of 30 sessions.  There is the thought that the radiation and Temodar 180mg daily are causing some edema.   I have started taking keppra 500mg in AM and 750mg in PM.  I am not on any steroids(dexamethasone).  I have been told that research has shown signs of Boswellia having pretty strong antioxidant properties-  but I do not have the source(s) for that thought.  So now I am concerned that Boswellia may not be great to take right now if it could interfere with the radiation treatments? 

Also, I don’t know if I should actively pursue changing to Valproic Acid to capture any potential benefits it could have as a radio-sensitizer?  Any opinion?

Thanks,
Mike

Tuesday 11 June 2019

Can I get the link to following:
1. TMZ adjuvants
2. Drugs/Off-label/ Supplements for IDH1 Mutation glioma 

Saturday 8 June 2019

New cocktail - feedback much appreciated


Hello everyone.  This website is amazing and I wish I had found it sooner.  My brother who is 46 has GBM, grade IV, IDH-1 wild type, MGMT unmethylated.  No other genetic data currently.  He has finished his first six weeks of radiotherapy and TMZ and is now in a 4 week break until starting monthly TMZ again.  We are in the UK and he is on the current ipilimumab clinical trial that is running. 

 

We have put together the cocktail listed below from information we have read.  I would be really grateful for any feedback anyone has on this.  In particular, is there anything missing and do the doses sound high enough - I am wondering if the curcumin should be higher for example.  Also, we have not included Boswellia currently  - is Boswellia something that should be included irrespective of steroid use?

 

The below list is all non-prescription.  Being in the UK, it seems to be difficult to get off label stuff prescribed.  It would be great to hear from anyone who has managed this in the UK.  I would be interested to hear from anyone that has been able to get e.g. Tamoxifen or Antabuse prescribed.

 

Cocktail

 

The items marked with * are things have been suggested to us for generally boosting the immune system, the others are specific to GBM.

 

Item Dosage per day
 
Berberine 1500mg -  500mg 3 times a day half an hour before meals
Bio- Curcumin BCM 95 (meant to deliver 7x more bio-active curcumin) 1200mg – 400mg 3 times a day with meals
 
 
Bio-Quinone Active Q10 (ubiquinone (coenzyme Q10)* 400mg – 100mg 4 times a day with food
 
 
Bio-SelenoPrecise (selenium) 200ug – 1 capsule a day.
 
 
Enzymatic Therapy Cell Forte with IP-6 and Inositol* 4 capsules a day which contain in total:
 
Calcium 260mg
Phosporus 380mg
Magnesium 80mg
IP-6 1600mg
Inositol 440mg
 
Fish oil (source of omega 3 fatty acids) – EPA and DHA 2000mg Fish Oil per serving (2 capsules) 660mg EPA and 440mg DHA. 
 
 
Genistein- Isoflavone derived from soy products 1 capsule per day:
Novasoy® Soy isoflavone concentrate (Non-GMO)  135 mg
Standardized to 40% isoflavones 54 mg
Soynatto® Fermented Soyfood (organic, Non-GMO) 435 mg
 
 
Green tea extract 1 capsule per day:
Green tea decaffeinated extract (leaf) [std. to 98% polyphenols by UV (710.5 mg), 45% EGCG by HPLC (326.25 mg)] 725 mg
 
 
Immutone (shark liver oil)* 1000mg a day
Maitake D fraction extract 60 drops – 20 drops 3 times a day between meals
 
 
Melatonin 20mg at night
 
Moducare (pro Vitamin D5, plant sterols and sterolins) * 3 capsules a day on empty stomach
 
 
Quercetin 500mg per day.  1 capsule in morning
 
 
Resveratrol 1000mg – 500mg 2 times a day
 
 
Salvestrol Platinum * 900mg – 450mg 2 times a day with food
 
 
Silibinin (ingredient of milk thistle) 2 capsules in morning which contain (in total) 316mg of silymarins (silibinin). 
 
 
Syno-Vital (Oral Hyaluronic Acid plus vitamin C) *
 
1 sachet a day
Vitamin D3 1 capsule a day - 5,000IU
 
 

 

Many thanks in advance.