One of the things I have forgotten to mention is my determination to take holidays. Sometimes this would be difficult to fit in around treatments and clinical trial responsibilities. I recall one holiday required at least 4 international conferences (not just about me of course) to be able to go for 4 weeks, rather than the 3 weeks required between infusions.
Since diagnosis I have been to Darwin, Broome (where my hair fell put for the first time) Canada and Alaska (where couldn't wear shores because of toe infections), Thailand, Russia (including a side trip to Paris and Ireland - Irish husband!). Vietnam, Cambodia and Vietnam. And Burma, but more about that one later!
This has meant travelling with no health insurance. Risky, but to some extent I have a bit of a black attitude to this. If I have to cancel for health reasons, then the money is probably the least of my problems. And if I get really sick whilst away , well, who knows..... We will just have to deal with it.
So, I went back to 150 mg of tarceva. We had to do a few modifications to the dose, but got there in the end. But unfortunately the progression continued. At this stage I was jogging again, 35ks a week and feeling very self righteous.
By end 2011 my oncologist was trying to get me ona new clinical trial, but the trial doctor was very reluctant given my extreme reaction to tarceva, and the fact that I would need a need biopsy to meet entry requirements, and I am not easy to biopsy. But in the end we prevailed and I got accepted into the Dacomitinib (extreme version of tarceva) and crizotinib trial in March 2013.
New trial doctor was predicting dire things, but I got through the first round with no side effects and headed off to the National Folk Festival in Canberra for 6 days of camping.
Gail
