Double Dose and Still Feeling Good
Last updated: September 2019
I have been on a double dose for two weeks and I’m still feeling good. This has come as a bit of a surprise. Always wondering when the day is going to happen that I begin to feel it again. It’s very hard to describe fatigue, no matter how many times I write or speak about it. The heaviness. The lack of focus. The awareness of the eyes. All very subtle individually, but when you put it all together. Well, it can be debilitating.
Upping my dose
Having said this, when my consultant mentioned upping the dose at my 4-week check-up after starting the new drug, I was 100% up for it and relaxed about it. I felt so amazing on the original dose I started on, I had no qualms whatsoever about agreeing to up it.
I started on 40mg a day which is, for standard chronic myeloid leukaemia patients, I think half dose. (Those with a very specific mutation within the CML mutation have 200mg twice a day I think so 40mg was nothing). I never start on the full amount as to date, I have never been able to tolerate it. I couldn’t even tolerate a fifth of the standard dose of one of the drugs. So my consultant, who I love, is always very cautious with me and monitors me closely so changes can be implemented quickly if they need to happen.
So when I felt amazing on the dose I started on, I thought, why not?
And I still feel good, which as I said is surprising. Whilst I am always glass half full about everything, which I know can irritate many…but if I wasn’t, I don’t think I would have made it this far.
Monitoring my leukaemic rate
The reason my consultant wanted to increase the dose is that whilst my leukaemic rate is good, I’m in the medically managed remission range with a magical 0 after the decimal place with the percentage scale they work on to see how many leukaemic cells I still have in me. At the moment I think I’m at 0.03% but my consultant wants to see if they can deepen the response and get it to 0.00 so they can relax even more about my results. I’m lucky in that my body does respond and responds well to the treatment. Sadly, it’s only whilst I’m on it, so coming off for breaks isn’t really allowed.
But, If I carry on feeling like this, then I don’t really see why I would need to negotiate time off treatment to give myself a break and a to get my life back again. I always hope that I will get to a place where when I’m given a break, my leukaemic rate doesn’t shoot up in 6 weeks and get me back to a potentially dangerous place with my results. If this were to happen, it would be beyond amazing! And then I would be able to seriously think about a baby. Even if I do it on my own with a sperm donor. I would do that. That doesn’t scare me. Anyways, I will just continue to hope.
How do you feel about your support system?