Celebration

Just imagine! I am celebrating yet another birthday today! I was not expecting that, as the judges say on American Idol! It feels wonderful to be alive and well, a full 66 years after the story started unfolding in this Irish farmhouse, where I visited a year ago today. My nephew's family provided a wonderful welcome home on that day!

 This birthday is being celebrated in beautiful Victoria on a nice sunny day. I am all excited as my sister arrives from New Zealand on Friday for a few weeks!

On the cancer front, my good friend Marcus is riding in Ride2Survive this Saturday, over 400 kilometres from Kelowna to Surrey, over the spectacular Coquihalla Summit, all in one day! What an extreme adventure, and all to raise funds to fund cancer research. He has raised over $20 000 this year. He is an amazing individual indeed. I will be there to cheer him in late on Saturday night. I wouldn't miss it for the world! If you are in a giving mood, and would like to support and encourage Marcus, follow this link: Click here to visit Marcus' personal page

I do have some very good news to share, to encourage Marcus, and perhaps others, to think of me as a living breathing human being with a future! I picked up my most recent PET scan report on Monday. It seems as if all of the tumours in my body have decided to back off a bit for now. They are less active than in March and are not growing. Even better, there are no new tumours! It seems incredible really that such an aggressive cancer can yield to treatment of any kind. It appears as if two rounds of ipilimumab and several bouts of radiation have persuaded the cancer to take a break. With the start of a new treatment regimen shortly, I may be able to make further progress. Who knows? What will be will be!  Peace and love to all

Unbridled joy!

It's interesting how shifts in information can be as life changing as tectonic shifts! This is a special morning for me.

I got a call from Lion's Gate Hospital today. I have been working hard with them for months to get access to PD1 treatment, a novel approach to tailoring the immune system to attack solid tumours. Several companies are coming up with drugs all at the same time. While I have been working steadily to get access to the Merck version of PD1, since it was the first to expand access into Canada, BMS has just opened up its Canadian Expanded Access Program for its version of PD1 and it looks like the road to it is much shorter so I will take that road. Next week I will meet Dr. Sasha again, a personal hero for me since my first ipilimumab treatment in the fall of 2012, and put all of the paperwork in place to begin treatment. I am over the moon!

In summary then, it is most likely that I will begin treatment with nivolumab very soon. If not, I continue the work to get access to pendrolizumab. Should one treatment fail, I dream of just moving to the next. People with ocular melanoma have not had options in the past. A swift end was inevitable. This is the dawn of a new era of hope. The decades long wait for progress is over. Down with tumours! Down with ocular melanoma! Down with all melanoma! Down with all cancer! 

Oops, we must remember to stay calm!  Ooooooohhhhhhmmmmm, shanti.    It is not like me to be chanting slogans and raising banners in the streets!  Peace and love to all, Nigel

Change is slow!

It has been a while since I posted. My travel plans imploded as I need to be around home to continue the campaign to get treatment with PD1. A new Canadian program just opened up last week but it is administered from Europe and communication is slow. I hope that I will be able to find a way to receive this treatment soon. My next PET scan is scheduled for June 11 in Vancouver. This will provide an update on my progress.

In the meantime I combine continuing advocacy for help with gardening, exercise and the pursuit of happiness! We have had some very beautiful early summer weather but rain has returned today. It seems like a beautiful blessing as  trees, shrubs and plants were all starting to notice how dry it was.

This is the start of my summer garden....   peace and love to all

Well, I have met with two surgeons and both of them say that they cannot help me. The surgery would be too extensive, the tumours are too deep, there are no clear margins, major blood vessels traverse that area, and a host of other reasons. They were both really fine people and clearly very dedicated professionals and I just have to accept that the surgery door is now closed.

In addition to this bad news, I have been through a few days of illness and that is always frightening. It is difficult to hold on to one's composure, believe that the pain will pass and life will go on.  At least I will have had lots of practice!  I am feeling very well and strong today again and have been out and about a lot. The weather cooperated, providing a bright and warm day. 

I spent four days last week in Palm Springs with a good friend and we played a lot of tennis. It is such a pretty resort and sunshine is guaranteed. The heat is on its way though and we watched the temperature go over 30 degrees at midday. Summertime there would be just too hot for me!

Here is a glimpse of the beauty...

Spring

Victoria is bursting with colour as I write and the temperature should reach 15 degrees today! I have been having a wonderful time starting the gardening season and spending lots of time running and cycling.

I have appointments with surgeons in Victoria on April 24 and Vancouver on May 5. Once I have had a good chance to discuss pros and cons, I will decide if that is what I want to do. I continue to research clinical trials and possible drug treatments every day. It is an exciting time as several drug companies are bringing immunotherapy drugs to market over the next few years. The trouble is, I may not have time on my side so it is with a sense of urgency that I try to get help. 

I have had an exciting week with a couple of breakthroughs. A melanoma organization is going to Ottawa next week to advocate for compassionate access in Canada to a promising new drug and I am now on their list of people who are desperately waiting. I have also found a hospital in England that is doing exciting work with cancer vaccines and they are willing to discuss whether I might benefit and how I might access their help.

So, I continue to hope that I can stay and enjoy this beautiful world.  Peace and love to all as always at this time of annual rebirth and growth.

From our rooftop garden