Iain Galloway has a rare and incurable form of eye cancer, called ocular melanoma, that has already cost him his left eye and most of his liver. Doctors are 99% certain the disease will return, possibly in his lungs, bone and brain.
Family and friends are building a Fighting Fund to pay for breakthrough treatments not available free on the NHS, or even in this country, for when the need arises so that he can live long enough to see his young son start school.
Only a few years ago this condition would have been an automatic death sentence but novel approaches to enhance the patient’s own immune system have offered some promise.
Iain has undergone a course of the drug Ipilimumab which raises the patient’s white blood cell count 20-fold. In most patients this is only expected to keep the cancer at bay for a relatively short period, if it has any effect at all. Although 8% of patients can expect to live cancer free for a very long time.
After that there is an option for a different immuno-related drug, which offers similar target rates for cure and response. However this may not be licensed for patients with ocular melanoma (OM).
In the end we fully expect to have to start paying for treatments as countless others have done before. An example is the £60,000 TILS/ACT treatment at Christie’s hospital in Manchester. This new and highly regarded treatment is not a cure but again can hold the cancer at bay in a significant number of patients. The problem is that it is not NICE licensed and hence not available on the NHS. Unfortunately OM patients are not usually accepted on drugs trials.
As funding difficulties abound the upshot is that treatments and tests such as:
- RNAi vaccines — readily available in Germany
- Brain MRI — NHS referrals are hard to get yet so much can be done if brain mets are caught early
- TILS/ACT — see above at Christies in Manchester
- Foundation One testing — provides tumour genetics information useful for accessing trials
- DelCath PHP — chemosatruation treating the whole liver pioneered at Southampton Hospital but for which NHS funding is dwindling
- Vorinostat — an HDAC inhibitor that interferes with the melanoma messaging pathways
- Anti-PD1 —The newer generation of monoclonal anti-body drugs are only available to OM patients in a narow window during an extended access trial offered by drugs companies
…are not automatically available via the NHS to Ocular Melanoma patients, yet represent amongst the best chances of considerable life extension. With such poor returns from the IPT (Individual Patient Treatment funding process) many of us are now raising our own funds.
So…the story will hopefully continue with Iain benefiting from each treatment and seeking the next route. The consultant suggested creating a ‘war chest’ for the next encounter after that. Perhaps a possible cure available in the US, who knows?
It seems that new research is getting closer to making melanoma a chronic condition which also makes this a race against time.
Please help fund Iain’s cause and also help pave the way for these groundbreaking treatments to become routinely available for others on the NHS.
The Eye Survive Team
Eye Survive is an organisation of friends & family set up to administer the “Iain Galloway Ocular Melanoma Fighting Fund”. The aim is to raise money to enable Iain to obtain groundbreaking new treatments in the rapidly advancing field of melanoma research.