Well I thought it was time for a catch up. Been back on Bosutinib now for nearly 3 weeks
– 3 weeks on Monday with very low dose steroids. I can’t remember what they are called but
they are an amazing colour!
Good news – my liver isn’t fucked this time and the steroid dose
is so low I don’t notice it in any way.
I’m also now on an even lower dose than when I began so that’s also
good. I also don’t feel miserable which
is also good. I generally speaking, feel
happy and positive which makes a nice change!
Although, to be fair, I felt good on interferon every 10 days. It just didn’t have an impact at all on my (resistant)
CML, so I should probably just forget about that being a nice drug option in
terms of how I felt.
So how is Bosutinib?
Well, it took a week at the lowest clinical dose for an impact to be
noticed on my energy levels. That was on
100mg a day. After that first week I’ve
been on 100mg/200mg alternating and I do feel tired. I have been getting shooting pains down my
skull which is my body saying, for gods sake GO TO BED! I am trying to get 10 hours sleep a
night. I don’t always succeed though. My legs don’t hurt which is good, I was
getting a bit fed up of leg pain with interferon weekly. So that’s good. Trying to focus on the good.
There is an application in for the ‘nicer’ interferon that
isn’t licensed here, but it is in Europe.
The decision lies with a panel of people at the Hospital who aren’t haematologists,
who don’t understand CML, who don’t know me and don’t really care that I am
always on at least half the standard dose so I am a cheap option compared to
others. Waiting to hear if they say yes….
I’ve gone off the idea of a transplant. Really don’t want to take the time out of
life now for it. Maybe being tired but
happy/ok with it will be bearable.
I don’t know.
I am knackered now though.
Cancelled tonight’s plans. But it’s
been a busy week.
I suppose I just need to see what happens…
Back at the hospital a week on Monday. Might know then about the other interferon.
With love and hope,
XXX
Glory be the Name of the( LORD JESUS)
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