Alternative to Bosellia Wokvel?

I've seen previous posts explaining the rationale behind the recommendation of Boswellia (WokVel) preparation. However, this formulation is currently out of stock from all suppliers in my area (UK). I note from Ben Williams' book that the dose of boswellia used in the cited German trial (showing reduced oedema) was 4200 mg/day, which is much higher than the 999mg suggested on this site. What's the best alternative to WokVel, given that I am unable to source it? I assume that taking it alongside Celecoxib is tried-and-tested?

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

Mom's Cocktail (Updated)

My mom was diagnosed with GBM, had a resection, and this is her treatment while on radiation/chemo.

Age 62
Weight 87 kg (191.8 lbs)
Height 176 cm (5 feet 9 inches)

Radiotherapy Medication	Morning	Afternoon	Evening	Notes
Granisetron 1mg		1		​1h before TMZ
​Sildenafil 50mg	​	1	1/2	With TMZ and Celebrex
Temozolomide 140mg	​	1		​1h before RT
Celebrex 200mg	​	1	1	Anti inflammatory
Boswellia 400mg	3	4	4	Anti inflammatory
Valproic Acid 500mg	2		​2
​Metformin 1000mg	​	1/2	​	Lowers blood glucose
Omeprazole 20mg	1		​1
​Hidroxychloroquine 200mg	1	​	1	Not Chloroquine yet
Curcumin 500mg	2	2	2	Not Longvida yet
Melatonin 5mg		​	​4
​Probiotic	​	1	​	​
Multivitamin	1		​	​
​Alfacalcidol 0.5mcg	1	2	1
​Vitamin D 2000UI	1	​	1
​Selenium 200mcg	1	​	​	​
Sulforaphane 50mg	2	2	2	​
Maitake 650mg	1	​	1	​
THC vape		​1	1	30m before RT
CBD oil 10% drops	4	6	4	1h before RT
Omega 3 2000mg	1	​	1	​
MCT oil tablespoon	1		​	​For ketosis
Ketogenic diet & Intermittent Fasting		​	​	​First meal 3 PM (after RT)
Wim Hof Method	​	​	​	Breathing exercises

We'll be adding the following as soon as we get the order in:

• Berberin pure powder 1g/day
• Ashwagandha 2g/day
• Pterostilbene 250mg/day

Anything important we should add/change? Thank you guys!

Bioavailability of WokVel Boswellia Serrata vs "ordinary" Boswellia Serrata?

Hi all,

I've read here that WokVel boswellia serrata has greater bioavailability than the "usual" boswellia formulation.  But I've not been able to find anything in the medical literature or on the WokVel website confirming this.  If I could replace the canonical dose of 4200 mg H15 BS/day with a smaller number of WokVel pills (what's listed on the supplements spreadsheet as three 333 mg WokVel capsules/day), that would make my husband really happy.  Anyone have any insight or citations to offer?

I did contact the WokVel company but they're oriented towards the business end, not end consumers, and my inquiry just resulted in an email asking about my business plans.

Conflicting advice from ND

Hi all,

My ND is suggesting the following things. I’ve read reports that state the opposite in these cases and wanted to get opinions. She is going to supply me with the studies she is basing her recommendations on as well.

During radiation and TMZ treatment:

No Boswellia - this is because of TMZ, not radiation. I was hoping to use Boswellia to avoid swelling and steroid use.
Fish Oil is okay during radiation. She says this can also counteract swelling.
Melatonin during radiation, she says it’s good to do.
Medical marijuana higher CBD than THC - I’ve seen advice that it should have higher THC than CBD


I have all of my files into Duke now and am hoping they’ll offer treatment alternatives. Mostly, I’m not sure I will be doing the TMZ, since the tumour is unmethylated. So some of these things may not be an issue.

Thanks.

Maria

Treatment options post-RT/TMZ phase for IDH1 mutated, MGMT unmethylated GBM

Hi all,

I was diagnosed in late September with a GBM (frontal, left, with large cyst, IDH1 mutated, MGMT unmethylated), which was subsequently successfully operated (gross total resection) at the end of September. I guess as many/most here, I eventually stumbled across Ben William's book, the Glioblastoma Treatment options guide and ultimately this invaluable blog and community, which I have been studying and following closely since. I recently concluded the first phase of my treatment, following standard Stupp Protocol (6 weeks concomitant RT/TMZ) and am currently planning next steps (plus waiting for first post-RT MRI next week...).

While I did not get 'smart' in time to save my tumor material from being paraffined post-OP (unbelievably, this is still standard practice here in Germany in most hospitals), I did actively supplement my first phase of treatment with what I think is a reasonably aggressive 'cocktail' approach, including the following components:

--------------------------------------------------------------------------------------

Meds:
- Chloroquine, 1x 250mg
- Celebrex, 2x 200mg
- Disulfiram, 1x 250mg - 500mg (+4mg copper)
- Sativex (THC/CBD spray), ca. 3-4 sprays (approx. 15-20mg)

In general, I tolerated these medications without any major problems or side effects, with a few exceptions. Notably, towards the end of the treatment I developed some peripheral neuropathy in my left foot, which has now almost recovered, however (took around 3-4 weeks to recover). Nevertheless, it cause me to cease the Chloroquine and Disulfiram shortly before the end of my RT treatment phase. In addition, I found it a little hard to tolerate Sativex as I wasn't too keen on the psychoactive effect, which gave me some anxiety / mild panic attacks from time to time at night. As a result, I took it only for around 3 weeks or so.

Supplements:
- Berberine: 1000mg
- Boswellia Serrata: up to 4400mg (gradually increased dosage over course of RT to protect from Edema)
- CBD oil (8%), 5 drops (started after ceasing to take Sativex)
- PSP, 2100mg
- Curcumin (Longvida), 2000mg, increased to 3000mg towards end of treatment
- Green Tea Extract, 3625mg
- Lycopene, 20mg
- Matiake D-Fraction Pro, 65mg (3x 23 drops)
- Melatonin, 20mg
- Omega 3 DHA/EPA, 3528mg
- Probiotics, ca. 40bn units
- Pterstilbene, 250mg
- Resveratrol, 500mg
- Selenium, 200ug
- Silymarin, 1500mg
- Soy extract, 3750mg
- Vitamin D, 9000IU

In general, all of the above were well tolerated without side effects. I'd also like to mention I was able to avoid any kind of Edema / Cortisone use during my RT therapy, which I believe may have been at least in part facilitated by Boswellia in combination with Celebrex.


Other:
- Ketogenic diet, max 40 g Carbs per day; generally constant medium to high Ketone bodies when measuring. Started 1 week before RT, and continued to last day
- Caloric restriction, lost ca. 8 kilos in 6.5 weeks of RT, which I think equates approx. 600kcal or so in daily caloric restriction
- Daily morning smoothie, with variety of hopefully beneficial things like berries, broccoli sprouts, spirulina, tumeric powder, Matcha green tea, cocoa powder,  etc.
- Daily walks of ca. 1 hour to combat radiotherapy fatigue and keep fit

Ketogenic diet was somewhat difficult to maintain psychologically, but possible due to my partner's kind help in continuously seeking out new and often tasty dishes to keep things interesting. Caloric restriction much easier, since Temodal anyway caused me lack of appetite. I believe daily walks were very helpful to avoid RT fatigue, which affected me only in very minor way and much less than I expected.

--------------------------------------------------------------

NEXT STEPS & QUESTIONS

I am currently considering next steps, and having talked to various NOs and other Brain Tumor specialists, I am still not entirely convinced what the right way forward is. As expected, most doctors do not want to deviate from the Stupp Protocol (i.e. follow up the RT/TMZ phase with 6 months of 5/23 TMZ cycles). However, I am not convinced such a treatment would necessarily add much benefit in my case, since my tumor is MGMT unmethylated.

One of the leading specialists in Germany told me that the unmethylated MGMT status is irrelevant in the case of IDH1 mutated tumors like mine, since a study (NOA-4) showed that there was no significant difference in responsiveness  between MGMT methylated or unmethylated IDH1 tumors.

https://www.ncbi.nlm.nih.gov/pubmed/19901110

However, upon further research I stumbled across the following interesting study from China, which seems to suggest that IDH1 mutated tumors might in fact be particularly resistant to TMZ (3-10x more resistant in cell culture test). The study also notes that in China they observed relatively little additional benefit of TMZ cycles for the IDH1 mutated group of patients compared to RT alone, and the authors argue that survival benefits for IDH1 mutated tumors may simply be the result of a less invasive / more benign type of tumor relative to wildtype. It makes me wonder if the fact that MGMT doesn't seemingly play as big a role for IDH1 mutated tumors is simply the result of the fact that neither responds well to TMZ...:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4747376/

I'm therefore a bit hesitant to simply go ahead with TMZ therapy hoping for the best, and would like to consider other options.
One approach I am considering is Immunotherapy at the IOZK clinic in Cologne, which is not far from my house. However, because I don't have frozen tumor material, they would have to make a personalized vaccine using a liquid biopsy approach. This, in turn, could make the treatment even more unproven than vaccines anyway are even when made from tumor lysate. An additional option which could possible materialize down the road (but not yet, as no trials are running here presently to my knowledge) is to try to get hold of an IDH1 vaccine on a compassionate use basis.


My immediate next step is to see the MRI results next week, but I'd be very grateful for any advice on how to proceed from here. Especially, I'd like to try and resolve the following questions:

1. Would it be unwise to not do any additional TMZ cycles? Are there any obvious chemotherapy alternatives perhaps?

2. Would the immunotherapy using liquid biopsy at IOZK clinic be a good alternative for ongoing chemotherapy cycles? Would it be advisable to start this right away (i.e. without any additional TMZ cycles), or should I do some TMZ cycles first just to hedge my bets?

3. Any other recommendations in terms of maintenance strategies. E.g. what medication(s) could make a good maintenance therapy, without concurrent chemotherapy?


Thanks in advance for any comments, and wish you all a very happy and most importantly healthy 2018!

Best,
John

Boswellia capsules

Reposted for Dominique

Dominique24 April 2017 at 19:22

Is there any boswellia serrata tablet that can be crushed? Or a capsule that can be opened up so its contents dissolve in water? I've only come across soft gel capsules which can't be broken up. I can't find any syrup either. 

Boswellia for brain edema

Hello, I have started using WokVel Boswellia Serrata 333mg , 4 pills 3 times a day, in hopes of helping with possible
swelling after RT. That is still short of the 4200mg used in study, so maybe I should increase a bit. Been using it for 3 days.   My husband is currently taking only 1mg of decadron, and when NO has tried to increase it he gets in a very bad emotional state. Has anyone had success with Boswellia ?
Thank you!!

Celebrex control edema? also question about boswilla

Hi all,

I come from China,this blog is wonderful to help my GBM wife.I want to start with a quick question. Stephen,i saw in the library excel that celebrex can help reduce edema,but i can not find related study in the library, do you have it?

I read the study on boswilla serrata control edema pretty well, just want to confirm is that still the best way?

Regards
Roy

Boswellia?

I'm a little confused about Boswellia. Should I be adding this to the cocktail during radiation? Hes not currently taking any steroids.....

Corticosteroids (eg dexamethasone) and survival in GBM

Click here to view abstract

This study includes such names as Roger Stupp and Michael Weller on the author list, so cannot be taken lightly.

This paper consists of a retrospective human study and a mouse study.  The mouse study shows an antagonistic effect of dexamethasone on the efficacy of radiation (mouse survival was shorter when given dexamethasone with radiation compared to radiation alone).   An anti-VEGF antibody (similar to Avastin) was used in another group mice as an alternative means of edema control, and no interference with radiation was observed.

"Beyond the established adverse effect profile of protracted corticosteroid use, this analysis substantiates the request for prudent and restricted use of corticosteroids in glioblastoma."

Edema generated on flight?

Hi All, we arrived on Sunday to Duderstadt to get some treatment for my wife. Today I felt her a litle bit like disconnected also with some symthomps increased around her hemiparesia. Talked with out second line onchologyst, the one that supports cocktail approach, and told us this long flights (30 hs) may cause edema, added to the fatigue, jetlag a also taking in considerarion that her last surgery was on February 22nd, yes almost 2 weeks, this maybe the main reason of her current status. He reccomends to start 24mg daily to reduce edema.

You can call us crazy, but the situation really diserve it. Whenever I have time will post a briefly her story/fight.

Thanks for the inputs.

Supplements... I need to know

My brother, 34 years old, has a recurrent AA grade III. It looks that conventional chemo treatment (Temodal for 5 mos and Temodal+Carboplatin for last 2 months) is not effective so I'm looking for additional treatments. I have been reading a lot of articles in favor of supplements and some against them but we don't have many options. The main question for me is how to find the optimal dosages or optimal combinations. Another question is where/what to buy. There are so many companies on the market so it's really hard to choose among so many labels. So I need your help.

He's on Depakine/Keppra for seizures and Vitamin D because of very big deficiency.

1.  We'd like to try Curcumin. 4g or 8g/daily? Can you recommend some manufacturers by best quality/price ratio with best adsorption? Meriva, Longvida, BCM 95 or C3?
2.  I've read that Boswellia can be a replacement for dexamethasone. Is it so?
3.  Dosage for Fish Oil/Omega 3, Selenium. Manufacturers?
4.  Quercetin? I've read that it works great with Temodal and some other article states that there is no clinical evidence that Quercetin works.

And the final question for cocktail drinkers is: did you choose supplements for your cocktail by yourself or did some doctor recommend it?

Dexamethasone vs. confusion

My wife is very confused lately - more so than usual. It's been about two weeks after the SoC of radiation and chemotherapy.

We have been trying to wean her of Dexamethasone so she's currently on 4mg in the morning and 2mg at night. But we're worried that her state of confusion is dampening her already dampened spirits.

I'm very wary of dexa - at our first hospital, the surgeon gave her a whopping 64mg a day, or 16 tabs. Her tumor wasn't considered "a time bomb" at the time but two weeks later, we rushed her to the hosptial as the tumor became very, very aggressive. I don't have anything to support this but I'm certain that the dexa had a hand in this as I feel it increased the glucose in her blood resulting in the growth. Our NO says there's little support for this.

Now, our new issue is that she was fine on 4/4 so we dropped her (per the NO) to 4/2 but her confusion has increased dramatically.

I'm trying to counter this is 2400mg of Boswellia (specifically http://www.amazon.com/Boswellia-Serrata-1200-Mg-Capsules/dp/B00C6B17VM) as well as turmeric and celebrex but it doesn't seem to be cutting it.

Questions

1. Are my fears of dexa over-blown?
2. If they are not, what alternatives do I have to the dexa?

Thanks in advance!

Swelling

What is the best thing to use for swelling/oedema? My dad uses now 16 mg dexamethasone a day, and is feeling fine when he uses it. But they want to temper down the dosage so they gave him a couple days a go half of the dosage a day: so 8 mg. He didn't go react well on it , so now they increased the dosage. But i know he can not take dexa for life becaus of side effects etc. so i am searching for the best brand of boswellia or other things
Any suggestions?

Updated 10/6/15 Cocktail: 63 y/o male with GBM

All - here is the updated list as of 10/6/15.  I've ordered stronger Reishi mushroom capsules so that will cut our pills down by 5 a day.  We're on day 14 and so far he's doing well.  Blood work showed some elevated liver values but nothing concerning and no need to add the Avastin yet.  His speech has improved and walking is a little better, but he shows signs of 'chemo brain' and issues with short term memory and fatigue.

Drug	Dosage	Qty	When
Pterostilbene	100mg	2 tabs	7:30 AM
Keppra	500mg	1 tab	7:30 AM
Dexamethasone	4mg	2 tabs	7:30 AM
Metformin	500mg	1 tab	7:30 AM
Selenium	200mcg	1 tab	7:30 AM
Verapamil	180mg	1 tab	7:30 AM
Depakote	500mg	1 tab	7:30 AM
Green Tea Extract	500mg	3 tabs	7:30 AM
Ranitidine	150mg	1 tab	7:30 AM
Reishi	500mg	6 tabs	7:30 AM
Quercetin	500mg	3 tabs	7:30 AM
Reservatrol	125mg	1 tab	7:30 AM
Omeprazole	20mg	1 tab	7:30 AM
Disulfiram	250mg	1 tab	NOON
Copper	2mg	3 tabs	NOON
Coriolus Versicolor (PSK)	600mg	2 tabs	NOON
Tumeric (NRF2)	600mg	2 tabs	NOON
Curcumin	750mg	1 tab	NOON
Celebrex	200mg	1 tab	NOON
Chloroquinine (Plaquenil)	200mg	1 tab	NOON
Pterostilbene	100mg	2 tabs	NOON
Pterostilbene	50mg	1 tab	NOON
Multi Vitamin		1 tab	NOON
Sulfamethoxazole		1 tab	M/W/F   NOON
Vitamin D3	5000 IU	1 tab	NOON
Green Tea Extract	500mg	3 tabs	NOON
Lycopene	10mg	1 tab	NOON
Maitake	1000mg	2 tabs	5:00 PM
Reishi	500mg	4 tabs	5:00 PM
Green Tea Extract	500mg	2 tabs	5:00 PM
Coriolus Versicolor (PSK)	600mg	3 tabs	5:00 PM
Keppra	500mg	1 tab	5:00 PM
Dexamethasone	4mg	2 tabs	5:00 PM
Depakote	500mg	1 tab	5:00 PM
Metformin	500mg	1 tab	5:00 PM
Ranitidine	150mg	1 tab	5:00 PM
Fluoxetine	20mg	1 tab	5:00 PM
Stool Softener	100mg	1 tab	5:00 PM
Melatonin	10mg	2 tabs	7:00 PM
Zofran	8mg	1 tab	7:00 PM
Viagra		.25 tab	7:30 PM
Temodar	140mg	1 tab	8:00 PM
Temodar	20mg	1 tab	8:00 PM

Questions:
1.  Verapamil - I asked our primary Dr. for more, and told her that I want a total of 480 or 600mg per day.  She instead upped us from 120mg to an extended release 180mg.  Does anyone know if Rich/Ben took extended release or shorter acting Verapamil?  Does anyone else take the extended release?  

Thanks.

Annie

Wokvel (Boswellia serrata extract)

Just wondering if anyone has tried "Wokvel" boswellia.  It is a product of Verdure Sciences, the same company that makes Longvida curcumin.

According to their website:

"Wokvel® Extract is manufactured in Verdure Sciences' hands-free, botanicals-only, ISO-certified, NSF GMP-registered facility. Wokvel® Extract adheres to the strictest standards set by global regulatory organizations, including USP, AOAC, and the state of California. "

"Wokvel® Extract also was shown to be bioavailable in humans, with a single dose of 333mg achieving blood levels of keto-boswellic acid (KBA) shown to address 5-lipoxygenase (3). "

Wokvel Boswellia is available in the brand Progena.

https://www.pureformulas.com/boswellia-serrata-extract-wokvel-180-capsules-by-progena.html

Boswellia during radiation

Does anyone of you have experience with Boswellia serrata to replace the steroids during radiation??

i read a study with 4200mg /day ..what do u think??
Or should i go with 3600mg/day??

Sarah