Hi everyone.
Thanks for having me here. Long story short: From the beginning of treatment we also deployed: - b17 amygdalin with pancreatic enzymes, b15 and vit C - high doses of vit D3 + A - milk thistle - melatonine - flavone - silicea - vit E400 - iodine - vit B1, B12 - zinc - selen Boy is feeling ok has loads of energy. Getting little bit weaker during radio/chemo. This is happening right now: We have 5 more radiations to go and then have option to go back to Poland to carry on with maintance chemo: Our doctor is planning to do it for a 1 year period (!)
Im thinking about shortening that period and doing some immunotherapy at IOZK after that as a finishing of protocol.
Also Im reading now about statins - lovostatin and want to ask our doctor to add it to maintance chemo as inhibitor of CMYC.
I know there is a trial for relapse medulloblastoma in Wien where they use fenofibrate - another anticholesterol drug.
My thinking is: We have good response for treatment and our biggest problem is to inhibit CMYC as its the main enemy.
As the doctors say we have only one shot with this diagnosis - cant let relapse happen.
Nikodem's dad |
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Hello. I am an adult with brain cancer, and an ex Pediatric RN who worked in Oncology. There is a mother named Monica in the USA who runs the Jelly Bean Foundation, in honor of her son, Jayden. She works with a lot of families and may be able to give you some guidance or know of someone that could talk with you. Will keep your family in thoughts and prayers from Sisters Oregon USA.
ReplyDeleteThis is the foundations Face Book page: https://www.facebook.com/teamjellybean16/
Here is their web site: https://fightingforjellybean.com/ and their email: Fightingforjellybean@gmail.com and Monica's email is monicamcneal87@yahoo.com I have also heard of a female MD named Dr. Agne Petrosiute. She is with the St. Baldrick's Foundation and works in researching Medulloblastoma. Here is the link to that organization and some information on what she has been working on in the USA. https://www.stbaldricks.org/grantssearch/researcherName/petrosiute/grantPeriod/all/country/US/page/1/ ~Kerry
Thank you. Already wrote to both.
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