New treatment opportunities- new locations! 4 March 2019
Hoping this update finds all of you, your family and friends doing really well and the New Year of 2019 has kicked off in the right direction?
You haven't seen much of me since the middle of last year because unfortunately the treatment line you all so generously supported me accessing in 2017 began to become not as efficacious as we all desired in 2018.
Therefore I have had to make a major decision as to what next.
As many of you know I am fortunate enough to be treated by the fabulous oncology team at Johns Hopkins in Baltimore, Maryland. These wonderful doctors recommended I try a new drug called Cabometyx which has shown promising results in metastic renal cancer patients. However in order to access the drug and to be closer to my medical team I made the decision to be based in the USA for treatment. I am currently living on savings and money raised through this site after funding the drug I required back in 2017.
To give you insight as to what that means and to how I see myself as an outlier. Toward the end of this year I will have been living with this disease for 5 years. The overall survival rates for those diagnosed with my disease clear cell renal cell cancer aka kidney cancer that has now spread to other parts of the body beyond the original site is a mere 8%. So just to be in that club is a great achievement. I really seek to extend beyond that . I take this one day at a time as I do not wish to get too far ahead of myself or appear over confident. You must respect the challenges and issues you endure as the side effects are really tough, actually brutal on this drug. You can not count on one day being the same as the next. Yet you need to be thankful for every day regardless of what that day may look like. As I have said many times before " it's not what you've got. It's what you do with what you've got". My purpose in life is singular and strong in that it is purely about living to celebrate life with Catherine and Clementine.
So I trust this paints an accurate picture of where I am at presently. Thanks again for your support in the past and support I hope I may be able to seek again in the future?
On behalf of the family we sincerely thank you and send our love. Arohanui and we just always want you to know we say thank you and give thanks for having you in our lives, so I may continue to live mine.