I think it’s called continuing or maintenance therapy, what I’ve been referring to generally as Phase 3, or perhaps that’s just the further chemo option. Hopefully (fingers etc crossed) this most recent bone marrow test will show I’m in remission, and after this intensification therapy and I think another bit (CNS, I think it’s called, though I’ve no idea why), I’ll go on to the treatment that will try to reduce the chances of relapse. In other words, Phase 3.
The transplant consultant does not believe my case justifies the risks (which are quite high) involved in a bone marrow transplant (BMT) from an unrelated donor at this stage, so my consultant has ruled that out. I think that’s because I’m not at especially high risk of relapse, though the percentage of ALL patients who do relapse is already pretty high. Also, this way I will still have the unrelated donor BMT as an option if whatever I do go for doesn’t work.
The choice, therefore, is between:
…an autologous transplant (officially called something like ‘high-dose chemotherapy with stem cell rescue’ or something like that), which is like the BMT but using my stem cells rather than someone else’s bone marrow or stem cells. This reduces the risks involved in the BMT, as I wouldn’t reject my own cells, and my bone marrow would start to regenerate more quickly so I would be at risk of infection for a shorter time. There is still, however, a 5-10% risk of death, which I believe comes from the fact that after the high-dose chemo infections could easily prove fatal until I recover. This course would see me in hospital for around 4-5 weeks, probably, and then I’d be done! The consultant reckons on about 3-6 months after that before I’d be back to full strength and normal life…
…further chemotherapy, which would take about two years, the first 25 weeks (or something like that) seeing me popping back into hospital for a week or so at a time fairly regularly, and then the rest of the time having me back in for 2 weeks every 3 months. By the looks of it, this chemo would mostly be intravenous and oral (ie tablets), and of course would be less intensive than what I’ve been having so far, and I would slowly be able to get back to an active life during the treatment.
The other option is to pass on responsibility for the choice to a computer: as I’m signed up for the UKALL XII trial the normal procedure would be for the choice to be randomised, as they have no scientific reason to believe one option is better than the other, and they want to find out whether one is or not. If I have good reason to choose one over the other (ie I’d prefer to take the risk and get it over with more quickly; or would prefer the less risky option; or if one means I can go to Tomandalice’s wedding and the other doesn’t), I can drop out of the trial and go the way I want to. But will I always fear I made the wrong choice? Then again, if I leave the responsibility to the computer, I’ll still be able to wonder whether I should have made the choice myself and gone for the other option.
Whereas my choices so far have been easy, such as this one:
Doc: You have ALL.
Doc: We can treat it though.
Doc: If we don’t treat it it’ll be fatal very soon.
Doc: So, do you give your consent for us to treat you?
Me: Well, that sounds like a good idea. Would you like a biscuit?
this choice is a bit more complicated, involving as it does the possibility that I will be condemning myself… It’s very tempting to leap at the autologous option because two years of chemo sounds daunting whereas being out and about within a few months would be wonderful, but then if I were to fall into the 5-10% I would feel that I was in part responsible for my downfall. If I were to choose the chemo because of the lower risk, will I be feeling fed up and frustrated in a year and half, knowing that I could have finished a year previously and had a lovely treatment-free 12 months instead of still plodding in for the next dose every so often? If I relapse will I always have that nagging feeling that I should have gone for the other option? If I randomise and things go wrong will I curse myself for not having taken responsibility myself?
Oh, it’s tough. Unlike most times that I’m being indecisive and agonising over a choice I have to make, this time it’s a serious choice with potentially big consequences. In my more sensible moments I realise that in many ways there’s no ‘right’ or ‘wrong’ choice, because both options might or might not work, and even if if whatever I choose doesn’t work out it doesn’t necessarily mean I made the wrong choice, but that’s easier to say than believe. And I do need to decide whether I’d be happy to take a risk so as to try to improve my quality of life as soon as possible. Gah.