Tuesday, 24 December 2019

Free Supplements Available

My husband developed permanent pill fatigue a few months ago and I have the following supplements/meds to give away. Many are sealed, but a few are open so specify which you would like and whether you feel comfortable with open bottles. I prefer they go to someone who is under financial strain. I am happy to send to the first couple of people who respond with their mailing addresses.
Wishing you all a peaceful holiday season! Sharon

Life Extension Super R-Lipoic Acid 240 mg
Panacur C (Fenbendazole)
Zinc 50 mg--Life Extension--opened and sealed
Shark Liver Oil 500 mg-- Solgar
Optimized Resveratol Life Extension--opened
EGCg 400 mg NOW
Mushroom Science Turkey Tail Coriolus Super Strength
Kyolic (Aged Garlic Extract/Lecithin)
Lycopene 10 mg--Puritan's Pride--opened
Sunflower Lecithin 1200 mg Softgels Now--opened
Optimized Curcumin 1000 mg Longvida --opened
Berberine 500 mg--Amazing Formulas
Melatonin 10 mg-- Nature's Best

Monday, 23 December 2019

Hi all and Merry Christmas,

My 23yo son was diagnosed with a Diffuse Astrocytoma, right frontal lobe.  Had an awake craniotomy on Oct 15.  According to Dec 6, MRI some may have been left behind due to location at/near motor cortex but surgeon also says could be inflammation or scar tissue.  Recommends starting 6 weeks radiation in January, followed by 1 year of chemo (Temodar). Wondering if anyone has ever delayed treatment.  Also, what supplements would you advise?  Do you take them during treatment?  I have searched through other posts but want to make sure I do the right thing according to his pathology report.  Thank you so much for your help!

Anatomic Pathology Diagnosis:
IDH-mutant, WHO 2016 grade II
IDH1 R132H positive
ATRX expression with focal loss
1p/19q NOT deleted

Molecular Diagnostics Results:
79 Gene Mutation Analysis - 1 Mutation Detected
IDH1:ENST00000415913.1:c.395G>A; p.Arg132His
TP53:ENST00000269305.4:c.818G>A; p.Arg273His
CDKN2B:ENST00000276925.6c.367C>T; p.Arg123Trp

TERT gene promoter mutation NOT detected
MGMT promoter methylation NOT detected
EGFR gene NOT amplified

Tuesday, 3 December 2019

Hi everyone!

My 14 year old son, Eli, has recurrent, metastatic medulloblastoma. The disease is in his bone marrow and bones.

He was first diagnosed in May 2017. He had a resection, 30 rounds of radiation and 7 cycles of chemo (cyclophosphamide, vincristine, cisplatin, premextred and gemcitabine). Eli had no evidence of disease for 2 years.

His recurrence was diagnosed September 2019. He had 2 cycles of temozolomide, irinotecan and avastin before this was stopped due to progression. His CNS remains clear of disease with only bone and bone marrow involvement.

I am now trying to decide between 2 different treatment options. 1) ACT001 (otherwise known as parthenolide). This would be a stand alone treatment that has mixed responses from adult glioblastoma patients. 2) A new trial called SJELIOT which consists of either cyclophosphamide and prexasertib (CHEK1/CHEK2 inhibitor) or gemcitabine and prexasertib. This is a new trial targeted at relapse medulloblastoma.

I am also in touch with Care Oncology Clinic in London but due to Eli's age they can only advise and cannot take him on as a patient.

Does anyone have any advice for me please?