Katie R
Posted by

Lower Drug Dose

Katie R
Posted by
03 Nov 2014

So my lovely bloglets,

I had a check up last Tuesday and once again I left just a little bit in love with my consultant.  I can't tell you how amazing it is to be listened to.  It feels rather surreal.  She asks how I am, I tell her, she listens and then she implements change and checks with me that it's ok.  Seriously.  This is amazing!  I don't know why I expect it to be different with her, I suppose it's because for the previous, well, 6 and a half years, I was asked how I was, I said and nothing was done.

So the change.  I have I think 4 days left of the current dose I'm on, then I drop down from 400mg a day to 300mg, which is the lowest clinically effective dose found in trials.  I shall see how that is for about 4 or 5 weeks and then I'm back again to see her to let her know how it is.  Depending on how the lower dose is and if it's still not great, I then have one option left.  If I decide to try it, which is MY decision and if it's not good I then choose the best out of a bad lot and stick with it, with possible breaks I think when it all gets a bit much.  But, hopefully the lower dose will be better or the last option will be. 

I suppose it's appropriate to talk about fatigue at this point.  It's not great at the moment, I won't lie. Have done a few epic sleeps recently.  The best was the night before last - 13 hours!  And then yesterday tears at the frustration that when I try to have a normal life for a few days I then need at least two days of doing nothing and multiple 12 hour sleeps to recover.  I don't want to whinge, I just feel a bit 'it's not fair' at the moment.  However, lot's of good to focus on, like my gorgeous nice who smiles at me so much!  It's amazing.  I am looking after her this coming Friday as my sister is going back to yoga.  I can't wait!

I am getting ever aware that the 19th January is just around the corner.  8 years.....

Another good thing I found out is that my consultant is fairly sure that I will be able to extend my freezing agreement with the hospital and that I shouldn't have lost my fertility which is a relief.  Just need to find someone now....

I feel like this post is a bit meh, maybe because I feel a bit meh.  I think maybe because I might just have to accept that I might just be a little bit (or a lot) tired for the rest of my life.  A big thing to accept, I don't want to, but maybe I will be more at peace if I do.  I still have hope though, hope that my body will get there, get to the results that are needed to come off treatment.  I have come so far, it just sometimes feels like I'm a snail on the pavement desperate to get to the other side of the road and I'm still 3 paving slabs from the curb on this side of the road.

Maybe I just need to stop being so whingy and be happy with everything I have.  Which is so much.  Don't get me wrong.  My life is so rich.  I have you, I have my family and friends, and twitter. I have my business and discovered I can call myself a Naturopathic Physician at the weekend which is really exciting!  And am involved with so many other exciting things.  Sometimes it's hard to remember all that and easier to focus on the slightly rubbish side of life.

As always, with so much hope and love,



Hi Katie,

It's so great to hear that you're happy with your new consultant and I'm really pleased it's working out for you. Not a lot of people know that changing consultant is an option and if they do are too frightened to ask. With that in mind it would be great if you could write a blog about this as a specific issue - without mentioning any names directly of course.

I think it would be really helpful for patients currently going through treatment to read a blog from someone who's been in a similar position.

Great news, too, about the reduced dose. I hope that that proves successful and that you don't even need to pursue the other possibility although it must be reassuring to know that you have options and above all choice and a say in your treatment. This is something that we want for all blood cancer patients.

Sorry to hear about your tiredness. I imagine this is probably a side-effect of your treatment? I've been tired a lot, too, but odd as it may sound have found that over time moderate excercise has actually really helped to boost my energy levels rather than make me feel more tired.

Hope this helps,