Ran and completed the 10km Rotterdam marathon

So I haven’t updated the site in some time now, this is mostly cause I was too busy with work but also reading up on what my results mean.
At the end of January I went for my routine blood works and bone marrow aspiration, 2 weeks later the results were in and my oncologist had a big smile on her face.

She started explaining how they did 2 different tests on the blood and bone marrow and according to the first test my cml values were 0.001% or lower and thus in undetectable state. For the first time since diagnosis did I feel a heavy burden just float away and for the first time life looked supercalifragilisticexpialidocious so to say.
She then continued on to say that the second test unfortunately still found some cancer hidden somewhere deep between the normal cells, but it was nothing to worry about as it was just a bit above 0.001%

Traveling is fun and exciting, there is no better feeling in the year than that of the summer sun on your skin and the cool breeze of the ocean. I like traveling a lot and try to see new places every year, this year everything changed and I was unsure about going on vacation at all. Was it safe for me to travel? What about travel diseases that you can get? What about my medication?

Here are some tips for when traveling abroad or even in your own country.

First let me start by saying that I’m in a chronic stage and that there is no need for me to have an aggressive chemotherapy type treatment. Due to this I will not focus in this post on that as I have no experience with it and just can’t judge. However I will give some general information about it that is available on the internet and will try to remove all opinions both mine and others from this bit.

The first pills – Glivec/Gleevec

So my first form of treatment was with Glivec, was developed in the late 1990s by biochemist Nicholas Lydon, a former researcher for Novartis, and oncologist Brian Druker of Oregon Health and Science University.

So here it is the full spectrum of numbers. I decided to upload this file cause it holds no real personal information and it might help others with understanding their own table a bit.

Green = normal value
Red = too high
Bold/Blue = too low

Philadelphia chromosome or Philadelphia translocation is a specific chromosomal abnormality that is associated with chronic myelogenous leukemia (CML). It is the result of a reciprocal translocation between chromosome 9 and 22, and is specifically designated t(9;22)(q34;q11). The presence of this translocation is a highly sensitive test for CML, since 95% of people with CML have this abnormality (the remainder have either a cryptic translocation that is invisible on G-banded chromosome preparations, or a variant translocation involving another chromosome or chromosomes as well as the long arm of chromosomes 9 and 22). However, the presence of the Philadelphia (Ph) chromosome is not sufficiently specific to diagnose CML, since it is also found in acute lymphoblastic leukemia (ALL, 25–30% in adult and 2–10% in pediatric cases) and occasionally in acute myelogenous leukemia (AML).

So on the 8th of July 2011, I got the news that I have Chronic Myeloid Leukemia, the first thing that happened was crying in the office due to the news my doctor told me. I asked one of the colleagues if they could drive me to the cancer clinic in Rotterdam as by request of my doctor.

The first few hours were so uncertain, what phase was I in, what’s going to happen now, why do I have to be in an isolated room and many more questions were rushing through my head.

The doctor comes in to the room, looks at me and just nods her head and says: “Don’t worry too much and please don’t read things on the internet”. She explained that a lot of people get the wrong idea about survival rates, treatment options and start seeing things grim.