I received inspirational story from a blog reader – I hope Suzie keeps us up-to-date with her progress and that we all join together to wish her health and the greatest happiness. Kris  

I would like to share my story…..

I am a 36 year old female pharmacist from Melbourne, Australia. I was diagnosed with CML on 8th May 2008 at the age of 31. My husband and I had been married around a year and we were more than ready to start a family. I went to the GP for a check-up and had some blood tests. I requested a copy of the results of these tests to be posted to me as I hate waiting to see the doctor to find out if I am low in vitamin D or iron or some other fairly insignificant thing. What a shock I got when I opened the envelope one night after work and it said “likely to be chronic myeloid leukaemia” at the bottom of my blood test, most of which was highlighted in red.

I was reluctant to get on the internet and read horror stories so instead I turned to my Merck Manual dated 1999. As this was written before the brilliant discover of imatinib, the prognosis for CML read palliative 3-5 years. I vaguely remember crouching down in the corner of the shower crying and hiding from the world. I’m not sure how I got through the night.

The next day I saw the GP and I don’t think she knew much about CML as she just gave me sleeping tablets, referred me to haematologist and told me to try and not go to “that dark place”. Easier said than done. That was a Friday and my appointment with haem was on the Monday so, believing I was going to die, my husband and I kicked our heels up for the weekend and tried to have as much fun as possible. We drank a lot at the pub and went out for breakfast, lunch and dinner but there was definitely a big cloud hanging over our heads.

After seeing the haematologist, finding out about the brilliant imatinib and being given the opportunity to live, I was thrilled and couldn’t wait to start. I asked about freezing my eggs as we really wanted a baby at some stage but I was told I would be on the treatment for the rest of my life so not to bother basically. I started on a high dose of imatinib (600mg) and continued to work full-time as a pharmacist. I struggled with the side effects, especially fluid retention – I gained 6kg in 48 hours. My face was extremely puffy and my eyes really swollen. Diuretics helped a bit but eventually, after reaching undetectable levels, I had a dose reduction then swapped to nilotinib a year after diagnosis as the imatinib was not working that well. I can’t remember how great my adherence was…

I found nilotinib much, much better but still had fluid retention issues and skin problems (dry, rashes and rosacea). I reached undetectable levels quickly and in September last year I stopped treatment to undergo an IVF cycle in October which was successful first time around (so lucky!). All was going well until the evil leukaemia reared it’s ugly head. In November my BCR-ABL went up from 0.000 to 0.15 then in December it increased to 5%. I was not expecting that at all. I knew it would come back, but I thought it would be quite slow.

I am 14 and a half weeks pregnant and I must now start treatment with interferon for the rest of the pregnancy. I am absolutely dreading it although the thought of my husband and I becoming parents is helping keep me sane. I am starting tomorrow night – YIKES and I am ready to feel like I have the flu permanently which terrifies me to be honest. They say interferon causes depression but I think the thought of going on it is already making me depressed.

On a positive note, before the invention of Gleevec in 2001, interferon would have been the only option to all of us with CML and it usually only prolonged survival so when I am feeling really unwell, I will keep reminding myself how extremely lucky we all are to have these life-saving drugs available. If everything goes well with the pregnancy, I will go straight back on nilotinib when the baby is born although I am going to ask my haematologist whether I can possibly try bosutinib as it sounds a lot better, especially for skin and puffy face issues.

In summary, I hate CML but I feel lucky to have a cancer that has a normal life-expectancy. I hope there will be a cure for CML soon because since I stopped my medication, I have realised how fantastic it is to feel normal and full of energy. I know there are a lot of people working on it and for this I am extremely grateful. That is my story for now and I will keep you posted how the interferon/ pregnancy thing goes…