Posted by

Living with CML and starting a family

Posted by
06 Nov 2014

I suppose I am writing this blog as I feel I am in a position to give other people in my situation some hope.

I was diagnosed with Chronic Myeloid Leukaemia in 2004 at just 22 years old.  To say this was completely out of the blue is an understatement - as far as I was aware I was a perfectly fit, healthy young woman.  I was put on 400mg Glivec daily and have been on this ever since. 

Being  22 year old with CML was difficult.  I was engaged to be married (we married three months after my diagnosis) and had plans to start a family in th future.  Initially my now husband and I were told we would never have children due to the nature of Glivec.  However, I had a very good response to the medication and my condition was very stable.  I discussed the possibility of having a family with my consultant in 2006.  I felt that I didn't want to wake up one day and my chance to have a child had passed me by and I hadn't even tried.  If we tried and it didn't happen then at least we would know and could try to move on.

My consultant advised me that there was little known about pregnancy and CML but he was happy to support us.  So it was agreed that I would stop taking Glivec towards the end of 2006.  I was given an 18 month timeframe, I had to be off Glivec for three months before we could start trying for a baby, to make sure the Glivec was out of my system, and then to become pregnant and the nine months of pregnancy.  This in itself seemed like a mission impossible but we were seen by a fertility consultant before I stopped the Glivec.  If at any point after stopping the Glivec my blood counts started to increase we would have had to stop and I would have had to go back on Glivec.  Amazingly I fell pregnant and my daughter was born in December 2007.  I went straight back on Glivec after she was born and my condition went back to a controlled level.

The time just flies when you have a child and we really wanted her to have a sibling...... So in 2009 we raised this with my consultant again.  He confirmed that my condition was stable enough to try for another baby.  This time there was evidence to show that I didn't need to wait three months after stopping Glivec before trying for a baby and shortly after I fell pregnant again.  My son was born in March 2010. 

Again I went back on Glivec just a few weeks after my son was born and have been very well since. 

Glivec can make me feel tired but the fact that I have two young children being tired is seen as normal!!

I am very lucky that I have very few side effects from the Glivec - moderate fatigue and nausea - and that's about it.

I am amazed that 10 years have passed since my dianosis and I am still very fit and healthy and have a wonderful family.  I know that this won't be possible for everyone but I hope that this blog may just give someone a bit of hope for the future.





Thank you so much for sharing your story! Reading this has quite possibly been the highlight of my day! I'm so, so happy for you that you've been able to have a family and that you've responded so well to the Glivec and proved that being on chemotherapy doesn't have to get in the way of your dreams.

It's stories like this that show just how far we've come in the battle against blood cancer and will be really reassuring to other young women about to begin treatment. I, too, was diagnosed with CML at a similar age and opted for the bone marrow transplant. What made you choose Glivec?


Hi Andy. I am glad you liked my post, I have never really discussed my condition before.

I didn't have an option with regard to the Glivec, a suitable match for a transplant has never been found so Glivec was my only option. At the time I waz very disappointed not having a match but I now realise that had I had a transplant I may not have had a family.

One of the best things I was told by a nurse when I was diagnosed was "you are very healthy you just have leukaemia" and that has stayed with me since!

I hope you are well.


Thanks for sharing - I found out I had CML less than a year ago at the age of 27, a time when most girls think seriously about starting a family. Like you, I believed I was perfectly healthy and a routine blood test landed me in hospital on 20 December, starting Chemo on Christmas Eve. What a year it's been, I am now on Nilotinib after having a scare by not responding to Glivec, and thankfully I was told from the outset that it was highly likely I could have a break from the drugs to have a family. It is thanks to ladies like you that I was told this on diagnosis - one of the first things I asked the haematologist after I was told I had leukaemia. Congratulations on your two beautiful children, I hope you continue to stay happy and healthy!


So proud of my lovely Daughter!
Love Dad xx


Iam 3 mont us glivcec