Retinoic acid for reversing immune evasion in IDH-mutant gliomas

I'm still going through the abstracts from this year's SNO meeting and came across this:

https://academic.oup.com/neuro-oncology/article-abstract/20/suppl_6/vi258/5154118
EFFICACY OF RETINOIC ACID IN REVERSING IMMUNE EVASION IN IDH MUTANT GLIOMAS

It's tempting to speculate that Ben Williams' use of Accutane (another form of retinoic acid - namely 13-cis retinoic acid) was part of the reason for his excellent response back in 1995. His tumor was since found to be IDH1-mutant. 

This study used ATRA, or all-trans retinoic acid.

chemo with dendritic vaccine

Dear all,
My son is finishing his second vaccine at IOZK. His tumor is astrocytoma III, H3K27m, low methylation ( our doctor still won't give us the percentage!), clean MRI ( only 4 months since surgery)
Van Gool is against any chemo for now. He wants to do another MRI in three weeks, and he added Accutane and Keytruda this time. Our US oncologist wants to do avastin and then temodar with CCNU. Another well-esteemed Russian NO who is very open- minded ( she was the one who recommended van gool to us) thinks we should continue with temodar while on vaccine since there is a good chance it worked till now. We are very confused - tend to just trust Van gool, but scared to give up chemo even for a month. Any thoughts? thank you!

IDH1/IDH2 status?

I've spent some time on the sister site, AstrocytomaOptions, but I'm still not quite sure of the significance of these two markers.

My wife doesn't appear to have either of these mutations and I'm not sure if that's a good or bad thing, or is it merely a status. Does someone that doesn't have these mutations change their cocktails, and if so, in what meaningful way?

Thoughts?

Accutane

My son is on Accutane for the anti-cancer benefits - but Ben Williams stated IL-2 works well with Accutane.  I am wondering if anyone has additional information on this or if anyone is using this combination? We are using only 40 mg metronomically. Has anyone used this method with good results?  Rich thinks this is a good way to dose Accutane.
Aunt Jo

Help on Accutane/PCV interaction

Hi All,
This is my first post so far, thanks to all for the knowledge shared especially to Stephen for the time he spends on this.

My wife was diagnosed 2 months ago with a GBM (mutated IDH1 / no MGNT) , It evolved from 2 full resection (201203-AAG3 / 201504-AAG3). Due to the internal capsule in compromised, there is a high risk of hemiplegia, so NO decided to apply PCV protocol in order to produce some regression that may help the work of the NS in a future surgery, decreasing the chance of collateral damage. Her tumour growth was fast in the last 3 months, but after the first PCV it has been stabilized. At that time we found Ben Williams story, Astrocytoma Options web, so we decided to follow cocktail aproach to create sinergy. She is now in the 2nd PCV cycle and we added Tamoxifen, Verapamil, Celebrex, Metformin and a bunch of suplements like Curcumine, Boswellia, Resveratrol, Fish Oil and a couple more. So now we want to add Accutane but we want to be aware of any possible interactions with PCV and avoid them.

PCV Protocol:

• Day 1 - Lomustine.
• Day 8 till 21 Procarbazine.
• Day 8 and 29 Vincristine.
• 2 weeks off.

Any advice on when she should take Accutane?

Thanks in advance.
Francisco.

13-cis retinoic acid (Accutane) and thalidomide combination in GBM mouse model

Inhibition of 13-cis retinoic acid-induced gene expression of reactive-resistance genes by thalidomide in glioblastoma tumours in vivo

In this study, nude mice bearing subcutaneous U251 GBM xenografts were treated orally with either 13-cis retinoic acid (Accutane), or thalidomide, or both.  While neither of the drugs alone influenced tumor growth rates, the combination of both drugs significantly slowed tumor growth up to day 18.

I'm not adding this to the library as it is available as a free download from Oncotarget (click on link above).

Accutane.. online? How to get in US

Hi, new here. My father was just diagnosed with GBM stage 4 on Tuesday. He's 63. I've started him on many of the Ben W drugs. Chemo can't start for another week + while biopsy heals.


I need help sourcing Accutane. Has anyone bought online or from Mexico? Were in the US and even if I get some myself the I Pledge will slow me down. I feel its an urgent component to his care and would like to start it now as we're pre-chemo. Contemplating a trip to Tijuana next. If anyone has advice there also welcomed.


Thanks.
Annie

Ben Williams - cocktail profile

Ben Williams' treatment summary as it appears on astrocytomaoptions.com.

Ben's tumor was recently determined to be positive for the IDH1 mutation, and positive for MGMT promoter methylation.


  

Information compiled from Ben’s book Surviving Terminal Cancer, and from the summary of his story at virtualtrials.com.


• March 31, 1995. At the age of 50, Ben underwent a subtotal resection of a large (180 cubic centimetre) glioma of the right parietal cortex, and was given an initial diagnosis of anaplastic astrocytoma, which was later upgraded to glioblastoma after a more thorough inspection of the resected tumour tissue. Extensive residual tumour remained post-surgery.
• Radiation therapy consisted of the standard 55-60 Gy to the tumour area plus 2 cm beyond the tumour boundary.
• The first MRI post-radiation showed neither shrinkage nor growth of the tumour.
• June 1995. Two weeks prior to his first round of chemotherapy Ben began taking oral high-dose tamoxifen at a dose of 220mg daily. Tamoxifen treatment was continued until March 1998. Side effects of tamoxifen included blood clots which he treated with Aspirin and long walks.
• July 1995. First round of intravenous BCNU (carmustine) chemotherapy combined with 600mg per day of verapamil taken during the week surrounding BCNU chemo. The verapamil was intended to block the drug extrusion pump mechanism at the blood-brain barrier, and therefore increase the penetration of BCNU past this barrier.
• The first post-chemotherapy MRI showed a moderate degree of tumour shrinkage.
• Between the first and second round of chemotherapy, Ben began taking oral Accutane (13-cis retinoic acid) at a dose of 160 mg per day on a two week on/ one week off schedule (he later reduced the dose to 120 mg per day). Accutane was not taken on the days of chemotherapy. Accutane treatment continued until December 1995.
• Also around this time he added melatonin at 15mg per evening and the immune-boosting mushroom supplement polysaccharide Krestin (PSK) at a dose of 3 grams per day. He continues taking 10mg of melatonin to this day (2014).
• August 1995. Second chemotherapy cycle, this time consisting of oral procarbazine, oral lomustine (CCNU) and intravenous vincristine. This regimen is known as PCV. Verapamil was again taken to improve the brain uptake of the chemotherapy during the week surrounding oral lomustine treatment.
• Second post-chemotherapy MRI showed an “enormous” reduction in the residual tumour.
• Third chemotherapy cycle, PCV.
• Added oral gamma linolenic acid (GLA) at a dose of 2-2.5 gram GLA daily, consisting of 10 capsules of borage seed oil.
• Late November. Third post-chemotherapy MRI again showed substantial shrinkage of the residual tumour.
• Early December. Fourth cycle of chemotherapy consisting of BCNU. Ben decided to switch back to BCNU due to stomach pain caused by procarbazine and neuropathy caused by vincristine.
• January 1996. Fourth post-chemotherapy MRI. No evidence of residual tumour, first “clean” MRI.
• Fifth cycle of chemotherapy again consisted of BCNU, followed by another clean MRI.
• The sixth and last cycle of chemotherapy consisted of PCV with a half-dose of vincristine to increase its tolerability. This was again followed by another clean MRI.
• Many clean MRIs followed, though Ben continued daily high-dose tamoxifen treatment until March 1998.