Hello.

I was diagnosed in 2005 with Chronic Myeloid Leukaemia (CML).  I also have some other illnesses.

I was given Hydroxyurea and 400mg of Glivec (Imatinib) to start with.  I then went up to 800mg of Glivec before going down to 400mg and then back up to 600mg.

I was on 600mg for a long time before my dose started being decreased slowly over some years.  Part of the reason was due to the very high levels of side effects that I was experiencing (including rashes, paleness, stomach problems, hair loss & extreme fatigue – I was told that I was the worst with the side effects) and the other reason was that I was retaining a high level of Glivec in my blood (I don’t seem to want to let go of it!!).  It makes you laugh when your Consultant says that you are special, but not in a good way!!

Since 2015 I have been on 200mg of Glivec and the level of Glivec in my blood has been going down.  The level is still a bit higher than the Hospital would like, but it is a lot better than it was.  All my other blood tests results have been good, including my BCR-ABL which is undectable.  I am in Major Molecular Response.

A few years ago the Hospital mentioned that if a trial came up to come off the medication then I would be possible candidate to go on this.  I never thought that this was ever going to happen to me.

A few days ago I saw my Consultant and he said that he had been thinking about things.  He said that I have been on Glivec (Imatinib) for a very long time now and have been doing really well.  He has said to me that he thinks that I should try and come off the medication completely.  I will not be part of a trial.

I will be monitored/have a check up once a month for two years.  This includes all the usual blood test, etc.  If everything is ok after two years then I would be seen by the hospital every three months.

The decision has been left up to me.  I was told that I am more than welcome to stay on the medication if I want to.  Although I may need an adjustment to the medication if I am still retaining too much Glivec in my blood.

I am totally scared and confused about what to do and what to decide.  It is a huge decision to me.  I kind of feel a bit safe where I am now with the medication, of how I am doing and that everything is a bit more under control.

I have been unable to work since being diagnosed and my quality of life has been reduced.

CML has left its mark on me inside and out.  I have always worried about what would happen should the disease ever change or get worse, even when I have been doing ok and the Hospital has been pleased with my progress.  I am a totally different person to I once was.  A lot has happened and gone on with the CML.

I just wondered if anyone out there has had the same decision to make or have actually come off the medication.  I would like to hear your stories and advice/comments.

Thank you for your time.  I look forward to hearing from anyone.