My mother was sadly diagnosed with a glioblastoma in January of 2018. She underwent her "debulking" surgery a week later. This went well, with almost all of the tumour being removed. Unfortunately, a brain haemorrhage occured 2 days postop and she was left in her NHS hospital room for many hours before receiving any medical attention (despite repeated pleas from myself and another family member for a doctor to be brought).
She spent the next month bedbound, unable to feed herself, and was subsequently deemed unfit to receive the standard chemo/radiotherapy treatment; this was still refused even after she'd improved and regained some limited mobility.
7 months later, and a recent MRI shows that the tumour is starting to recur. Mum is slowly deteriorating.
The only treatment I have been able to obtain thus far are the "Care Oncology Clinic" drug cocktail medications and a number of nutritional supplements, chosen based on research I've read online.
I know lots of good information has already been posted on this blog and elsewhere regarding alternative treatments for GBM, but since mum still cannot access the standard treatment, apparently because of her poor performance status, I'm interested in hearing other people's experiences with any of these alternatives.
Examples would include clomipramine, CUSP9, cannabis oil, immunotherapy, ketogenic diets and the Optune device, but we are interested in anything that may help.
I would love to see this damn tumour shrink on the next MRI.
Thanks.
Welcome to this community Ollie! I am also here for my mom.
ReplyDeleteFirst thing we did is put her on a very strict ketogenic diet, supplemented with MCT oil:
http://news.ufl.edu/articles/2016/04/lower-carb-diet-slows-growth-of-aggressive-brain-tumor-in-mouse-models.php
We also do cannabinoids (CBD & THC). Lots of research shows that both are benneficial, and together are most effective. Planted our own plants, bought a 1:1 thc/cbd strain. And we're going to make Rick Simson Oil and plan to get the dose up to 1mg/day.
Also bought all the supplements on this page: http://astrocytomaoptions.com/supplements/
Hope this helps. I wish both our mothers the best of health!
Hi Paul,
DeleteThanks for the welcome.
I've been wanting to put mum on the ketogenic diet since March. Problem is she is in a nursing home (requires nuring care due to the after-effects of the haemorrhage) and we are effectively stuck with whatever food they provide.
Similarly, I've been trying to source cannabis oil for months - lots of dead ends, but I now have a promising lead. I should've grown it myself from day 1.
There seems to be conflicting info online regarding the best type of cannabis oil to use for GBM, in terms of plant strain (sativa vs indica etc.), THC:CBD ratio and whether to use full extract oil or not. Concentration levels and dosage advice also varies, so I'm rather confused.
I saw your full cocktail list on another post. Many of the supplements used by yourself and others are difficult to source in the UK, and the majority of doctors in my area will not prescribe off-label drugs. Clompiramine is the only one we've been able to get.
Any help on sourcing supplements/drugs from fellow Brits would be greatly appreciated.
eastlight04 at gmail.com