Some Good News!

Last updated: April 2020

During my last appointment with my consultant, she said something pretty amazing that I have been waiting so long to hear, and it came out of nowhere. As my leukaemic rate has been so good for the first time in years, and consistently low, she said that if, IF it stays like this for the next year, then she will take me off treatment and consider seeing how I go off it!

This has been something that I have wanted, well, basically since my diagnosis in 2007. I’ve never been happy being on treatment for life. I don’t know if it’s because I was only 22 when I was diagnosed, or if it was something else. I just knew that it didn’t sit well with me, having to rely on medication for the rest of my life. I knew that if I could, I wanted to get to a place where it wasn’t needed anymore.

A desire to go off treatment

Crazy? Naive? Ungrateful? Possibly yes to all of these things. Lots of people don’t understand why I don’t like taking the meds that I do. I get to lead a ‘normal’ life, don’t look like I have cancer, and don’t have to worry about it killing me... so why wouldn’t I be joyous about only having to take an oral chemotherapy for the rest of my life?

Well. That’s just me.

Not long after I was diagnosed, after the horrific side effects kicked in, I asked if anyone ever came off treatment, if they got the results they needed to do that and what they were, and my then consultant told me that it was possible, but it happened to very few. I decided that I wanted to be one of those few.

This has seemed like a dream idea over the last 12 and a half years since I asked. With all that has happened with changing treatments because of side effects and not being prepared to live a half-life because of them, it seemed that coming off treatment was just getting further and further away.

The drug that worked

Then I was granted compassionate access to a trial drug. One that has seemed so much better than all the others. One, for example, hasn’t nearly destroyed my liver, which is useful. In the beginning, it did seem amazing. I had so much energy, I could do so much, I didn’t feel heavy and like everything was an effort and struggle. I remembered who I am without treatment.

Then the side effects started to creep in slowly, subtly, so the dose was reduced and the Leukaemic rate shot up.  But after a while, I was able to reduce it again. And you know what? I don’t feel like I did when I started it just over a year ago. I am more tired. I do need 10 or 11 hours of sleep a night. I do feel heavy. I do struggle to do things. The shooting pains down my head are beginning to appear again.

But, if all of this means that in a year’s time I am off treatment, monitored, and able to stay off treatment...  well, it’s all worth it really, isn’t it?

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