The Thomas family

The Thomas family
From left to right, Tania, Dave, me and Corina

Tuesday, 26 April 2011

A bit of a bumpy fortnight

It is a fortnight now since I started taking Sprycel, the drug I was on before my transplant, and it has been a bit bumpy.  As I reported in my last blog, the first day after taking it was pretty bad as I reacted  to it with flu-like symptoms. Fortunately that was the worst of it.  Since then I have been through a period of aching all over but that is gradually easing and is now just some areas (the soles of my feet for example).  It hasn't stopped me from enjoying the fabulous weather though, or having a lovely Easter weekend with lots of visitors.

I had my regular appointment today and it went quite smoothly.  The only thing of note is a slightly reduced platelet count compared with last time, probably due to the Sprycel.  Dave and I plan a brief holiday next week so I have been asked to go in for another blood test on Friday (yes, THE Wedding Day) to make sure that my counts are not on a downward trend before we go.  All else is OK, with no sign of GVHD, and I'm pleased to report that my Cyclosporin dose has been reduced yet again so I am now on one 25mg tablet a day.  This is so low that I'm also stopping a drug I have been on to counteract the tendency of Cyclosporin to raise my blood pressure.

Some of you may have heard me mention my friend Michelle, who also has CML and looked like she was heading for a transplant too.  She has been given the chance to go on a trial of a new CML drug which, if it works, may mean she doesn't need one.  She has been asked to set up her own blog to map her progress, as this is the first trial of this drug in the UK.  If you want to see how she's getting on you can read her blog here Good luck Michelle, I really hope it works for you.

Wednesday, 13 April 2011

Knocked for six


Another slightly late post but I think I have a good excuse this time. I had my usual appointment on Monday for bloods and with the consultant, followed by my session on the nebuliser, followed by a trip to Marylebone High Street for a bone scan, followed by a two hour wait to see the consultant there.  What a day!  I got home at 9pm! 

My bloods were fine and I also had the results of another test for the level of leukaemia in my blood. Sadly it has gone up slightly from 1.7% to 2.3%.  Nothing terrible but enough for the consultant to put me back on the CML drug I was taking before the transplant, Sprycel.  It may seem strange to be a given a drug which was not working for me before but that, of course, was with my old blood.  Now I have new blood and there is no reason to think that it won't work with that.

Restarting Sprycel brings me to my other excuse for not posting yesterday as I reacted quite badly to the first dose, ending up in bed most of the day with pretty bad flu symptoms and nausea.  I'm feeling much better today, just aching all over and with itchy ears!  The good news from Monday is that I have reduced my dose of Cyclosporin again and may be off it soon, and I have been given the go-ahead to get out and about a bit more and even (wait for it) go on public transport!  I have been warned that I will catch more colds than I used to but that has to weighed up against getting my life back to some sort of normality.  I'd already done a bit of that by going back to church for the first time on Sunday which was lovely.

The only other thing to report is my Look Good, Feel Better session a couple of weeks ago.  There were about 15 ladies with various cancers there at a variety of different stages of treatment.  We were run through a session on skin care and make up (a bit like teaching your grandmother to suck eggs but I picked up a few tips and an updated approach to my make-up) with numerous therapists to help out. It was very nice to be pampered a bit and to be sent away with a bag of goodies donated by cosmetics companies.  Things were a little awkward when we got to the eyes as I was sitting there with my lush lashes and eyebrows, surrounded by women who had neither!  I'll definitely miss the super eye lashes when I stop the Cyclosporin.

Next visit to the hospital will be on Tuesday 26th due to the Monday being a bank holiday so I'll update you then.