Dilemma
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...
and
...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:
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.
Brain melting...
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...
and
...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.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?
Me: Oh.
Doc: We can treat it though.
Me: Hurrah!
Doc: If we don't treat it it'll be fatal very soon.
Me: Ouch...
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?
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.
Brain melting...
posted by George at 3:24 pm
9 Comments:
George,
I know that all anyone can do to help you with this choice is send all the prayers/good vibes we can. Although this may like a lonely choice (I pray it doesn't), you're not alone in spirit. Everyone who loves you knows you'll do what you truly feel is best.
I know you know how much love these words come with, which is just as well because the word endless only belongs in cheesy pop ballads!
Wishing you everything you wish,
Fi
xx
Oh djorge, have such a big hug for you, feel like I'm going to pop... I have problems deciding what to wear or whether to get the bus or the train, or what is best on toast; marmite or peanut butter (for those of you having similar toast dilemmas a combination of both is surprisingly good)... now I have perspective, but overwhelming urges to hug you which is difficult because I'm in deepest somerset and you are far away. LOVE (I'm shouting it because it has to go further that usual) djo XXXXXX
George,
Much love and my heartfelt support as ever. It's such a tough position to be in, but I'm sure you'll cope masterfully, as you have done with the many challenges that have faced you in this difficult time.
I tried to email to elaborate, but it seems to have bounced, and not sure how to address letters. I am contactable at the usual addresses, electronic or otherwise, so if you would like, drop me a line and I'll say hi properly!
hannah xx
Oh blimey George, what a hard one. Sending lots of love and support - we are all with you all the way whatever you choose.
On a brighter note it was fabulous to hear you sounding so much bouncier last night. Can't wait to see you tomorrow (yay!!!!!)... in my excitement about seeing you I downloaded AA directions from Oxford to Southboure from the internet two days ago! See you tomorrow!!!!!!
Lots of love, hugs and kisses...
Robyn x x
Well i am def with Jo there, puts a whole lot of things in perspective, although Jo peanut butter and marmite is soooo wrong so you newbies who were contemplating the idea dont try it, its all about the peanut butter on its own!
As for you little Robyn just you make sure you give george a big phat hug from me too and i must say i echo Andrew's comments...please dont get lost, we all know what you're like, hehe. Love you really.
Anyway back to George..sorry my lovely got a bit distracted there. That is one big decision to make, i almost dont know what to say (and thats a first!) i am sending you all my love, support and prayers to you and your lovely family, as there is not much else i can do being at the other end of Europe! Honestly George we are all here every step of the way so just you remember that.
love you loads and loads
Row xxxxxxxxxxxx
That sounds like a brain popping decision (can you say that?!) . .but as everyone else has said, I'm sure you'll make the right decision for you . .and you'll never know what would have happened (bit like sliding doors really . .in some way!)
anyway, can't really help much more than that . .and to send you a massive hug along with everyone's elses!!!
Huge huge and Big X
mansa
ps that was huge Hug not huge huge! sorry!!
Hello Gorg
a tough decision whichever way you look at it. always here to listen if you want to bash through the pros and cons of your options - computers may be excellent at making randomised decisions but friends are best for listening! (i speak from experience - i regularly shout at my computer and it doesn't make the blindest bit of difference to the stupid thing)
love ali x
ooooh row and robyn!! mmmmmmwah XXXXX
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