should i stop my treatment?

Glad you're enjoying life at the moment, though sorry to hear you're having problems with fatigue.

To be blunt, the advantage of continuing with treatment is that you'll reduce the odds of relapse and increase your chances of living a long and healthy life.  ALL is harder to treat when it relapses - at best, you'd need more intensive treatment with more of a risk of causing long-term fatigue and other health problems.  If you've got one year of maintenance treatment left, it's not a case of weighing 50 years of this fatigue against the risk of relapse - hopefully you will feel better once the 1 year of further maintenance has ended, so you could have 50+ years of good health after that.  I know a year seems like a long time (I've got just under a year of maintenance chemo left - and it feels like there's still ages to go) but if one year of treatment and fatigue gives you a significantly better chance of having 50 years running round doing what you want, would that be worthwhile?

Can you talk about the choices you've got - and the risks associated with them - with your nurse specialist?  Or you could give Macmillan a ring 0808 808 00 00  There might be other ways to deal with fatigue while still having an active life - for example, might cutting back work hours slightly let you do more outside of work?

In terms of random questions, how do you manage with the knocks that come with Roller Derby?  I'm on maintenance for ALL and end up with impressive-looking bruises from a game of 5-a-side football - impressed that you manage Roller Derby so regularly!

Yeah 50 years of good health would be nice and i guess i need to try and look beyond this last year, obviously you'll know that, that can be difficult. I didn't really know about it takes more intensive chemo if it comes back so that's something to think about. The last thing i want is to go through all this again. I discussed it once while on intensive and my specialist basically said to just continue and there wasn't really an option to stop. 

Also i kind of rushed into gaining my independence as i got shut off just as i was about to leave home and start my career. So I now have a mortgage and feel that cutting my hours down wouldn't work, my employers are pretty good though and organize regular occupational health appointments and even some physio. 

I've not really had impressive looking bruises actually. My knees are pretty tore up today because Sunday i took some hard falls on my knees but apart from that I've been okay. Getting into it was hard as it took a lot more out of me than i could have ever imagined!

Thank you for your comments 

Seems a sensible decision, though do talk to the people treating you if you have got questions.  If money is tight with mortgage etc., it might also be useful to speak to Macmillan or similar to see whether you can claim any benefits (if you haven't already).  I've been able to get a dishwasher and a cleaner, which really helps save energy.

Your profile's right to give your age as 20?  If so, impressive that you've managed to get a full-time job and mortgage by this age as well as fitting in ALL treatment!  Maybe you could look on continuing with treatment as an aspect of planning for the future, in the same way as you're doing with home ownership/mortgage?

Hi Ben,

Just want to say what an awful thing you have gone through the last few years as ALL is a horrible disease and the treatment is so intense. My mum is 59 and got diagnosed in Oct and its been an awful 7 months. From what i read when your so young like yourself and you get through the treatment the odds of relapsing are very low and you should manage to get back to your normal self again. It seems like your so nearly there now but can understand why you have had enough of treatment as it is a really long process. I know after 7 months my mum has said i can understand why people stop treatment as it is so intense and hard going. (She is due for a tranplant in a few weeks as classed as high risk due to her age)

Try and hang in there as you have gone through the worst of it and hopefully in another year you can hopefully be sure that your rid of this horrible disease  Helen xxxxx