On with treatment

Hello again. What a long silence! No inspiration!

I had my third infusion on Thursday - only one more to go. My body got quite sick between infusions two and three but I have now recovered and am enjoying life again. This illness may be a good omen. A reaction to the medication is associated with an attack on the disease as the immune system ramps up. So, fingers crossed please! I know, your fingers may be tired already!

We have been enjoying very pleasant, dry but cool weather for the past while. We have rain this weekend but it is supposed to give way to bright and unusually cold weather next week. This is not my favourite time of year but I will make the best of it. There are lots of interesting activities available for mind and body. Best wishes to all as the days shorten some more!  Peace and love, Nigel

Philadelphia

Here I am on the High Line in Manhattan, seeking friends wherever I can find them. We are all in this together. We had a lovely day in New York and enjoyed the childrens' Hallowe'en Parade in Washington Square.

We travelled to Philadelphia at the beginning of November for a three day conference dedicated entirely to ocular melanoma.  There, for the first time, I found myself in the company of 60 people afflicted by this horrible disease. Two thirds of them have had a primary tumour in the eye but no metastasis to distant sites yet. They were attending in order to learn what help would be available in the event that metastasis comes their way. Genetic testing, which most people in the US can now have at the time of the primary tumour, can determine the level of risk and the vast majority of those people were at high risk. Twenty of us had varying degrees of metastasis.

The top doctors in the US who deal with this disease spoke to the conference about their work. They see many patients as most people end up being referred to Philadelphia, Boston, New York and Colorado.

There was interesting information available about how one gets into clinical trials of new therapies. There was a range of workshops on living with the disease. A lot of participants enjoyed being able to network with others affected.

In summary, there is little help available for someone in my situation. Great progress has been made in controlling at least temporarily disease in the liver. My tumours are almost entirely outside the liver. I enjoyed meeting with Dr. Tamaki Sato, perhaps the best known oncologist in the community. He spent quality time with me reviewing my health status. He approved of the decisions I had made to date and felt that there had been a net benefit from immunotherapy and it would be good to proceed with the reinduction I have already started.  He held out some hope for a clinical trial he intends to organize soon using a MEK inhibitor that has been shown to slow the progress of the disease for some people.

I am now home in Victoria and focussing on the present moment above all.