Hi All, looking for some feedback/ideas/questions for docs...
Background: dx Dec 2010 aged 37 (female). At that time we had planned to start trying for a pregnancy in my next cycle so pregnancy actually came up in my first appointment... before I was even diagnosed. I was dx very early (almost normal WBC, no blasts, normal spleen) so there was time to do 2 IVF cycles before starting treatment in Feb 2011. Unfortunately we only got one embryo from the IVF. I started on 600mg of gleevec - I'm in Australia so must start on G but can switch to either dasatinib or spycel for lack of response or intolerance. The hope was firstly of course to do well enough to live and secondly to get to PCRU which here is -log4.5, and then see if I could stop treatment to give us a go at getting pregnant. I responded well, on international scale:
3 months, -log 2.2
6 months, -log 3.8
9 months, -log 4.0
11 months,-log 4.1
With the (not unexpected) slow down between the 6 & 9 month PCRs I went to 800mg of gleevec at the 10 month point and had another PCR at the 11 month mark. It seems that my response is leveling off earlier than hoped. It's not clear that I will not get down a bit further on 800 G but there are several issues: 1) side effects at 800 suck quite a bit - I'm struggling to work, 2) I'm 39 on Tuesday and the clock is ticking, 3) I think that the side effects may be stressing my body to the point that it is effecting my fertility, 4) I want to get as low as I can before stopping treatment, actually that is not really a want but a need.
Under the Australian system my side effects are bad enough to switch to a 2nd generation drug, my question is which one and why?
I have had some facial / whole body edema on G but no lung issues & < 5% of my body weight, I've also had a few very minor skin issues, my counts went low but recovered on 600 G & are now just a little low on 800 G but nothing serious, my ALT/AST have never been perfect but again nothing serious.
I know that spycel is most different to gleevec but then I am doing pretty well on gleevec... we just want more.
I've been asking about switch drugs since the 9 month point but my hem/onc felt I was still doing pretty well and there was a risk of me doing less well on another drug. She is now leaning towards switching me to spycel but I haven't been able (yet) to ask her why spycel. She is referring me to see a CML specialist for a second opinion (still waiting for that appointment) and I think he will be the one who makes the decision. In the mean time I'm still enjoying the 800 G.
Thx for reading...cheers