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Help me save my son - 11yr DIPG


Shlomo613
(@shlomke-baron)
Joined: 1 year ago
Posts: 7
Topic starter  

Hello all, 

 

 End of Jan 2020 my son was diagnosed with DIPG. We did not do biopsy yet. We planned on CED In NYC, but sadly his tumor continued even with radiation extensions onto the Thalami. 

 

 He was down to maybe 50 lanksy at times, now to 70-80ish. We have onc201 for 3 weeks already. A bunch of supplements, now focusing on boswellia + curcum + peperine and some other things to work on inflammation. 

His left side is very weak, and mostly it is hard to speak as he must speak from his stomach.. Not sure what's going on there but it's clear it's a bit of work to speak. 

 

 So now I am hoping you guys can help us improve our treatment plan.. 

We are at IOZK doing the virology treatment, I have found a company that can supplement their treatment  - enhancing it greatly. I sent them contact info and basically demanded they integrate it if not already at once. That is the major attack directly on the DIPG for now. 

 

 In addition that attack we must plug the many pipes DIPG uses (H3 most likely its spreading is signature..) 

-ONC201

-2-DG + Malfortin? for glucose pathway blockage

-various vaccines, etc... My son is Hla0201, not sure yet how to integrate it. Also want to speak to Dr Muller in Zurich next week about getting us this peptide vaccine... 

Those doors all get closed on DIPG. 

Now that's as far as I got. 

 

There is Car - T coming up... And a mysterious company has presented Car M which looks amazing! But my son is facing 4 months since radiation, the tumor needs additional therapies. 

Thanks for all your help! 

 


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Shlomo613
(@shlomke-baron)
Joined: 1 year ago
Posts: 7
Topic starter  

https://vaximm.com/research-development/#VXM01 this company makes something that could help but I'm not yet exactly sure how we integrate it as a strategy. 

 

We are based in Germany, in IOZK clinic. 

 

Son is taking 2mg DEX in morning 1mg at night. He has been taking it for 4 months already we are desperate to get it off. 

 

 


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Shlomo613
(@shlomke-baron)
Joined: 1 year ago
Posts: 7
Topic starter  

https://www.nature.com/articles/s41416-020-0759-0 This study gives support for our main strategy right now:

ONC201 + IOZK Virotherapy with NDV + Glucose tactics (2-dg + malfortin?) 

 

Help us perfect this, and add to it! 


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Manuone
(@manuone)
Joined: 3 years ago
Posts: 146
 

@shlomke-baron

Hi shlomke,

I am sad to hear about your son's illness.
I think ONC201 is very interesting, it has a good safety profile and, as you say, it can be very synergistic to the therapies you are talking about, especially 2 DG metronomic.
From this blog through the Lampidis Foundation your hospital could be advised to implement 2 DG metronomic
https://www.cancertreatmentsresearch.com/a-new-approach-to-improve-effectiveness-of-cancer-therapies-is-getting-ready-to-begin-human-trials/?highlight=effectivy%20cancer%20therapies
How are you going to access ONC201? Is it through a clinical trial? I am thinking of acquiring it for my mother's therapy ...
There are drugs such as sodium phenylbutyrate that works on HDAC and celecoxib that can complement therapy well.

kind regards


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 NA
(@j)
Joined: 3 years ago
Posts: 531
 

controversial but I can't not share this: https://pubmed.ncbi.nlm.nih.gov/24718705/


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NA
 NA
(@j)
Joined: 3 years ago
Posts: 531
 

"A Case of Sustained Objective Response of Recurrent/Progressive Diffuse Intrinsic Pontine Glioma with Phenylbutyrate and Targeted Agents":

https://www.scirp.org/journal/paperabs.aspx?paperid=52985


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NA
 NA
(@j)
Joined: 3 years ago
Posts: 531
 

FYI. When Phenylbutyrate is metabolized in the body it produces byproducts, and those are the "antineoplastons" which Burzynski manufactures synthetically.


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Shlomo613
(@shlomke-baron)
Joined: 1 year ago
Posts: 7
Topic starter  

Interesting I've heard about this and not sure what all the controversy is but I'm sure someone will fill that in.

 

At this moment I'm trying to focus on things that may synergize with current treatments underway but for studying ill look at the above 


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NA
 NA
(@j)
Joined: 3 years ago
Posts: 531
 
Posted by: @shlomke-baron

 

-2-DG + Malfortin? for glucose pathway blockage

 

Recently someone posted about a syro-metformin combo for DIPG

https://www.cancertreatmentsresearch.com/community/postid/2543/


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