My History

I've been wanting to write a blog about my experiences for a while, but never did get around to it.
I've finally decided to sit down and sort it all out, so i'll start at the beginning, and add some blog entries from my diary.
Apologies if some entries are long, and also written in different tenses - it depends when I actually wrote them!

Tuesday, 11 February 2014

3 Years and counting.....

I am very aware I have neglected this blog.
I always have been a bit rubbish at keeping things up, especially diaries/blogs/cleaning the house etc.
The main thing is that...I am still here! (Just over 3 years since my transplant)

It's not been an easy ride. Firstly, I only managed 7 months in remission before relapsing........again (I seem to be good at that).
I started to have pain in my chest and a PET scan revealed 4 tumours.
I started on Brentuximab Vedotin (SGN 35). I had 4 treatments, 3 weeks apart, and then a scan.
The scan showed a slight improvement so my doctor (Adrian Bloor) decided to do another 4. Again, over the same period of time.
I had a PET scan in December of last year (2013) and it was good! It was actually good! Pretty much NED (No Evidence of Disease). The only down side was that I found out that 3 of the tumours had been in my Sternum. Pretty frustrating no doctor had ever told me it had spread to my bones. The extent of the tumours have pretty much destroyed the inside of my sternum which does cause me pain occasionally.
I had my 4th DLI (Donor Lymphocyte Infusion). It was the biggest infusion of Lymphocytes I have had - and Shelley - my sister and donor- had to donate again for me :)

The pain I had previously had returned occasionally, and this led to Adrian requesting another PET scan last week (My 17th PET scan!).
Results were today, and luckily the scan shows I am still clear! There is some slight colour change on the scan which shows -possibly- some sight activity, but Adrian is pleased, and says I can return in a month for blood tests, and if I do need another DLI, this would be the time to have it. It would also be the last DLI I can have. 

So there you are. That's you up to date.
Of course my personal life has had many ups and downs -as usual-, but everything in my life is good for a change :)

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