Hey jjg, yes - I know, maybe that's part of why I'm finding this hard to accept. It's just frustrating having little control over my response - it's something I've struggled with from the very beginning really. Yes, my 9 and 12 month results are weird. If even just one of them wasn't there I don't think I'd be as puzzled about what's happening, I don't think the doctors would have paid attention either, this seems to be why they were concerned and have me on 'watch'. Maybe I got "lucky" and got two inaccurate results in a row!
You are so right, the extra monitoring is probably what is doing my head in, looking at the results 3 months apart, and they don't look that bad - unfortunately for me, putting in all the extra data points makes it look worse. I get it, that I may be seeing trends that might not be there - I think this one just wigged me, because I truly expected it to be back down again, or so seemed to be the previous pattern. I try so hard to see meaning in things, and maybe it's just not there - there is so much more randomness to the universe than my mind wants to accept.
Thanks for your explanation of resistance and mutations. I hope this is not the case, but I guess I will have to wait and see. I know I have drug concentration level problems, but the mechanisms behind that are just as unclear...
With this extra monitoring, I usually just call up the hospital and they put me through to whichever doctor is on to retrieve my results. Yesterday I got a call after I wrote this post by my actual haemotolgist telling me not to worry just yet. I think I will likely end up changing to tasigna if this pattern continues, but I am very scared of change - even if it could be so much better, the unknown is what always gets me.
Lucky, thank you - I do manage to get there after a time of panicking! This panic time seems to be getting shorter each time, so maybe I am making progress there...I think I need to wait and see what I need to do in terms of drug switch. It is good to know that there are lots of people like you who have switched and gotten good results, and sometimes improved side effects. I hope your pain gets better the longer you are on sprycel. I have pretty horrible muscle cramps and bone pain on gleevec. Last night I was awake at 3:30am for an hour of excruciating intestinal pain. Sometimes these side effects can be very difficult indeed.
Thanks Tedsey - yes, that was a good one! That's partly what scared me actually - because his assessment was that I was losing response so I must be the cause of it somehow. I think maybe he only just read that paper on medication compliance and outcomes last week...I am on imatinib 400mg from the start. I hope your next result gives you some peace of mind - the mental battle is definitely a huge part of living with CML, that's for sure. I am so grateful to have this board full of people who understand and also have a lot of knowledge.
Thanks for the kind words Susan, you continue to be an inspiration for so many of us on this board. I hope it goes back down again - then at least I can have a month of feeling ok about it!
Hey Dan, nice to hear from you! I know I am definitely not alone, it does help a lot to know that. I think I just get so panicky when I see it going up that it reminds me of how I felt in the beginning - that it is completely out of my control and I hate that. Like Tyler Durden says in Fight Club - "you have to give up" - I have to give up trying to control something that is actually out of my control, I can take my medication, I can look after myself, but that's it. Your wife has some sound advice, I really need to listen to it too
Thanks so much for the help everyone. I'm sure if this was someone else's results I wouldn't even be worried for them - I just need to work harder at convincing myself that I shouldn't be any different to other people (i.e., I am not doomed!). I realise that the wheels fall off my wagon quite often, so thank you for responding and having patience with me
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14