Emails have been sent, more phone calls will be made this week. I am aiming to improve nutritional support for brain cancer patients in this country one step at a time. It is crucial that we do not downplay the importance of this.
I will have a discussion (preferably over the phone or in person) about nutritional support for brain tumour patients with The Brain Tumour Charity and hopefully also Danone UK (they own Nutricia).
As an informed cancer patient with a degree in nutrition I am greatly concerned by the poor nutritional advice I received from registered dieticians, in particular the recommendation and prescription of high sugar drinks during treatment. I have a considerable, growing body of evidence that supports the need for radical change and I believe this is possible with small changes over time. The easiest way to start is with these high sugar ‘build up’ drinks (eg. Fortisip, Ensure, Complan etc.) recommended for brain cancer patients.
Radiation oncologist Colin Champ MD agrees with me.
As a simple example, we know that high sugar drinks (like Fortisip-Nutricia, owned by the Danone group) will reduce efficacy of the treatment, especially with dexamethosone (hyperglycemia is common as a response and is a predictor of poorer survival as shown below)
It is not uncommon for brain cancer patients to develop type 2 diabetes as a response to this steroid treatment over a period of time. It is worth noting the following…
‘Excess pro-inflammatory mediators, some of which can cross the blood brain barrier, may trigger neuro inflammation, which subsequently exacerbates neurodegeneration. Insulin and IGF-1 resistance leads to weakening of neuroprotective signalling by these molecules and can contribute to onset of neurodegenerative diseases.’ http://www.sciencedirect.com/science/article/pii/S0165572814001751
Additionally, poor glycaemic control will make it harder for patients to control brain tumour related epilepsy which is also not uncommon.
I have been trying to contact Danone UK via email as they understand metabolic therapy, the link between blood sugar and brain cancer treatment outcomes, and they have the KetoCal range of products to treat children with epilepsy. I wish to discuss the possibility of a nutritional shake similar to KetoCal for all brain cancer patients (to replace the common Fortisip, Ensure, and Complan shakes).
I hope that we can substitute the fats with MCT oil or powder as is increasingly common in Japan and South Korea to help manage neurological disease as I have discussed in another post. We already know that MCT supplementation can help to manage epilepsy even while on a standard diet (http://www.hindawi.com/journals/crinm/2013/809151/) so with the significant amount of brain cancer patients that have epilepsy I don’t see why this should be too much of a problem to implement clinically.
I can present all of the strong research I have collected and I believe my opinions will carry more weight if I can get support from The Brain Tumour Charity.
I remain completely convinced that even this small ‘build up’ shake substitution will be a step forward for improved quality of life and improved treatment outcomes for patients like myself.
I already take MCT oil from Nutricia to help manage my epilepsy.