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.
In the UK an Oncologist is unlikely to prescribe off label drugs. Have you asked your GP?
ReplyDeleteMost recommendations for Curcumin are 6 capsules/day of the Longvida formulation.
Sorry for the delayed feedback, and welcome to the blog.
ReplyDeleteI primarily think of Boswellia as a way to reduce edema. Is he on dexamethasone or something similar (the answer is probably yes if he has any significant cerebral edema)? If so, Boswellia could help bring down the steroid dose, which could also improve response to immunotherapy/ checkpoint inhibitors.
Curcumin can be taken in large doses, the main difference between unformulated curcumin and formulas like BCM-95 or Longvida is bioavailability, the ability to get absorbed into the bloodstream. You could probably increase the dose somewhat.
I would aim for 3000 mg (3 grams) of EPA + DHA per day.
10,000 IU of vitamin D3 is safe for most people in northerly climates. It would be helpful to know your baseline blood levels of 25-hydroxy vitamin D (also known as 25-hydroxycholecalciferol, calcidiol, and calcifediol). This is the form of vitamin D most commonly measured in the blood, and would tell you where you are starting in terms of vitamin D status.
Stephen
ReplyDeleteThanks so much for your feedback. He had significant cerebral edema on diagnosis and was put on dexamethasone to get that under control prior to surgery. He had a near total resection on surgery and remained on dexamethasone for a period after that. However, he has not been on dexamethasone for a couple of months now. I wondered though if boswellia could be taken in any event to seek to prevent the need for steroids in the future i.e. as a preventative measure.
In relation to the curcumin, what sort of dosages do GBM patients typically take? I am thinking that the dose should be doubled (to 2400mg) but am wondering if that would be enough or if it should be tripled (to 3600mg) or even quadrupled (to 4200mg).
Noted on the fish oil thanks, will increase. I will look into the baseline blood levels for Vitamin D and then look to adjust.
Many thanks again.
Taking Boswellia as a preventative measure isn't going to hurt, though I have no information on whether this could actually prevent edema that hasn't yet occurred.
DeleteA common dose for Longvida formulations of curcumin is 2000 mg daily, although Longvida is only about 25% curcumin, but it has superior bioavailability and was also detected in rodent brains, so it has ability to cross the BBB (the formula was designed as an Alzheimers treatment).
The better the bioavailability of the formula, the less curcumin you need to take for an equivalent effect. In general curcumin seems to be pretty non-toxic, and the first limitation you would probably run into in terms of side-effects would be gastrointestinal. Doubling to 2400 mg doesn't sound unreasonable to me though, as long as you increase dose gradually in steps and stay observant for any negative side-effects.
is CBD or CBD/THC legal in the UK yet?
ReplyDelete