I'm not in remission. And that is incredibly emotionally taxing to say, still.
You don't really get remission with CML, not in the "cancer's all gone, no more drugs, I'm all good" sense. You do however get to live a normal lifespan these days, thanks to the new wonder drugs (of which dasatinib is one).
I'm at the point that my bone marrow looks normal, and so they're not interested in testing it anymore (thankfully!!!). My blood still contains a non-zero amount of the BCR-ABL protein though, meaning I've still got CML.
And yeah, I'm another one who never really got ill - I did get a triple whammy of bronchitis, laryngitis and sinusitis a few months before diagnosis, but that'd be because of the undiagnosed CML. That diagnosis was just over four years ago now - that's what I mean by the "four years in" bit.
Where are Terry's bloods at right now? The hospital should have the basic counts, i.e. red blood cells (Hb, short for haemoglobin), white cells (WCC, white cell count), and platelets - the turnaround on the test for getting those numbers is super short (within the day). The biggie there as far as travelling goes is the white count, as they're the cells responsible for fighting off infection. Given he's just been treated for Septis, not sure I'd fancy travelling right now, but that said, if it's all paid for and you think it'd help you both mentally/emotionally, then yeah, maybe worth going anyhow... Tough call without knowing his numbers!
I had one week in hospital when I was first diagnosed, then lots of trips in and out for tests (but all as day patient), and am now just being tested quarterly, no issues with infections but then I'm lucky like that; had a few weeks off work initially then straight back - in hindsight I went back way too soon and should've had more time off to recuperate and emotionally/mentally get my head around it all (and my partner says the same - we should've both had time off together!). But I wanted to feel normal immediately, and that included being at work - like I say, in hindsight it was the wrong decision, but heh.
If you have a friend you can delegate as central phone person, do so - get everyone to phone them for updates - it'll really take that pressure off you.
It is definitely very up and down, but if you're going to get a form of leukaemia, this is the one - it's got one of the best survival rates of all of them now. Something like ninety percent of people are still alive, and in fact thriving, at five years after diagnosis. Once you remember that half of the people diagnosed with this are over 65, so there's a fair few people diagnosed close to the natural end of their lives, then that's an absolutely massive rate of survival, with a pretty much hundred percent chance that Terry will ultimately be fine 🙂 If you can find a good therapist to talk to, and/or a good support group, then do so - talking, especially to people who understand, can really really help. I will caution you that it can be a bit weird at times, given that the CML treatment path is very different to the stereotypical cancer path, and that can result in feeling odd one out-ish, if that makes sense.
As for cost, it really shouldn't be that much of a worry I don't think - dasatinib is on the PBS (go to pbs.gov.au and you can search for any drug), limited to $36.90 per prescription, so that's all you'll be paying for it. Yeah, that works out to a few hundred a year, which isn't ideal, but it sure beats the four to six grand the government pays per script! Hospital - I think pretty much everything should be covered by public hospital, but am not entirely sure about that - I went in as a private patient in a public hospital, and have top extras hospital cover. Of course, any time he doesn't work is lost income I s'pose, but you knew that already.
Really, I think you have every reason to be positive - there seem to be remarkably few complications involved with CML; there are a few different choices of drugs if one doesn't work / the side effects are intolerable; the drugs are all covered by the PBS; and the general medical/scientific understanding of the condition is really quite good. And having just looked it up, dasatinib looks like by far the easiest of the three drugs - take at the same time every day, with or without food, your choice? Bliss! Speaking from experience, Imatinib can cause a ton of nausea if you don't have enough food with it, and Nilotinib requires you to fast for two hours before and one hour after every dose, nothing but water during those three hours. Twice a day. Ugh!
That said, remember to give yourself time to flail and panic - even though the outlook is pretty darned positive, this is still a big scary shock and life change - you're all going to have quite the emotional rollercoaster, getting used to this. And that's fine, normal, expected; allow yourself the time and space for those emotions. Just vent outwards to friends, rather than onto Terry - I'm guessing he'll need to know that he can lean on you...
