I have Leiomyosarcoma and I am writing to let you know my journey so far with this. I was diagnosed after the original tumour was found in a fibroid after I had had a routine hysterectomy in 2005.  Then of course I had a MRI to see if it had spread and unfortunately it had already spread to my lymph glands in my abdominal area (various tumours). At the time I was transferred from the gynaecological department to a specialist in sarcomas who had seen this type before, albeit rarely! However as this was not the original site I was not given a very good prognosis – note: I am still here in 2008! I have not had any treatment or chemotherapy as I agreed after looking up about this type that it would probably not do any good and I decided whatever time I had left I wanted to be in as good health as I could and not put my body through any un-necessary and pointless procedures at this time. The only drugs I had were for the flare up of polymyalgiarheaumatica which was probably triggered off by these tumours and was causing inflammation throughout the rest of my body.  I was put on steroids, and as I did not tolerate the normal anti-inflammatories I was put on all the ones that were being banned at the time and were having a bad press! Like:  Vioxx (rofecoxib) and Arcoxia (etoricoxib), and then finally I have been on Celebrex (celecoxib) for the last year and a half. 

In the last year each of the previous scans have shown not only no increase but amazingly a decrease in size of my tumours! No-one seemed to know why!  After I did some research of my own I discovered that in America they are doing some clinical trials using Celecoxib in varying amounts as they have discovered they work in clever ways and may help to shrink these tumours – as my Consultant says he presumes it actually is these tablets that have helped in my case – purely by chance! I know there is still some controversy over these types of anti-inflammatories and how they may affect other areas of your body, especially if you have any pre-existing heart conditions. I have had an increase in my blood pressure over the last six months, but otherwise I do believe I would not be here if I had not had these tablets. I have also had an operation on my spine last October to remove part of a slipped disc and I have not had any problems even after putting my body through that type of stress, my last scan in March 2008 showed no change. I currently have regular scans 3-4months and am managed by my local GP for the inflammation which does vary occasionally if have a cold or infection of some sort, he is supportive and honest in dealing with me and I can visit my local oncology specialist hospital to see counsellors if I feel the need to do so. Which I do occasionally as sometimes I think it is good to talk about your feelings with someone who is not emotionally connected to you and sometimes I find it difficult to cope with the enormity of what I am carrying around with me, my beasties as I call them and other people do not really understand no matter how hard they try!

I hope by telling my story, someone out there could ask to look at possibly trying these tablets if their own consultants/ GP thought it appropriate and just hope someone else may benefit as I have done.