@adifer

That's a very significant shrinkage!

I am certainly interested in learning more about phenylbutyrate.

Was the hydrocephalus a result of the phenylbutyrate?

regards,

Johan

@daniel

With regards to side effects, which one is the most "dangerous", syromet or phenylbutyrate?

I will try see if I can source phenylbutyrate from a pharma company.

The Curcumin we use is Solgar Full Spectrum Curcumin, 2 caps a day.

Regards,

Johan

@johntt

Syro is much more of an uncharted theritory in terms of side effects compared to PhenylButyrate.

Like Adi said, the drawback with phenylButyrate is the taste and smell that is very bad. 

The curcumin you are now using has very little Curcumin inside. For an adult, the dose that was reported as being relevant in oncology was in the range of 7-8g/day of Curcuminoids. This shoudl help you calculate what you need.

Kind regards,
Daniel

@johntt

Since the tumor was pretty large, the CSF flow from the cerebral ventricles to the spine was reduced to an almost stop, so pressure built up in the brain (hydrocephalus). Since this happened while we were in the hospital (august 2019), we got an immediate shunt operation. This was before the second round of radiotherapy which took place august 2019-sept 2019 which improved his condition but not very much (nowhere near as spectacular as radiotherapy round 1). On the bright side though it stabilized the tumor so it stopped growing.

We started ONC201 in oct 2019 which gave a small improvement by January 2020 (think 6.1 cm diameter to 6 cm on all axis). Syromet and phenyl started out later (march 2020). According to the surgeon that installed the shunt, in gliomas it is frequent that proteins build up in CSF, which give it a yellow color and increases viscosity of CSF so in time the shunt just clogs. This does not happen in deformities or just obstructive tumors (benign tumors for instance). For such cases it is not unusual for the shunt to last a whole life (a coil of the tube is made inside the abdomen so that it "grows" with the child). For gliomas in general, the story is different, apparently shunts don't last so long. Yellow CSF can be caused by proteins or infections (this can give it also a cloudy appearance which was not our case-CSF analysis showed it was sterile).

The hydrocephalus I was speaking about in my previous post came around end of May 2020. I have no idea if upon tumor cell death, the protein production increases, could be... The shunt is not placed in the tumor, it is placed in one of the cerebral ventricles so there is no direct impact of tumor growth/shrinkage to the shunt. The shunt is a very narrow tube, not very flexible(when you turn your neck for instance it shouldn't bend so it stops flow) with reduced flow (think tens of ml/day) which also has a  complicated valve stuck on it, which of course can clog easier than the tube itself. Once pressure builds up, it gets much worse, blood vessels rupture which lead to blood clots which leads to more blockage.

I would say there is no problem in this regard if there is no shunt there in the first place. The natural way of clearing CSF is much better than a tube.

@daniel

Thanks Daniel, I have already been in contact with our local pharmacy to see if they can get hold of both the PhenylButyrate and the high grade Curcumin!

I have got more answers on this forum in just a few days than from some doctors over the entire last year!

Regards,

John

@adifer

thanks for your elaborate answer!

It's very difficult to get good advice in this battle against this terrible disease and every decision is so difficult!

Our daughter also responded good on the second round of radiotherapy, but also not as good as she did in the first round. We are hoping that there's no progression but are preparing for the worst.

Again thanks a lot.

Regards,

John