Living with Chronic Myeloid Leukaemia

Katie CML patient - Pharma Times article

17th July 2018

Katie Ruane was just 22 when diagnosed with CML, and while drugs keep the disease in remission it still takes a huge toll on her life


Can you describe the events that led to your diagnosis?

My body had been telling me things weren’t quite right for around six months before my diagnosis. I went off smoking, my long hair was coming out in handfuls when I washed it, and I wanted to eat beetroot every day (beetroot is full of nutrients that helps the blood). I lost weight without trying – from a healthy size 14 down to a size 8-10. Over Christmas I was really tired, with very little concentration, but what made me go to the doctor was that I nearly fainted twice in a week.

I went to the doctor in the morning, explained my symptoms, and they did a blood and urine test. They said that I should go back in a week to discuss the results.

However, that night the phone rang and it was the hospital. I made them tell me enough over the phone to work out I had cancer, phoned my parents, and I was in that night with a confirmed diagnosis of chronic myeloid leukaemia. The doctors were amazed I was still conscious given my seriously high white blood cell count. If I hadn’t walked through the door on the Friday night, I would have collapsed over the weekend and been admitted through A&E.


How did you cope?

I was pretty shocked. But as I was told I wasn’t going to die, could still have babies and could still drink, I was pretty much okay and just switched off from processing anything. That all started later when the shock had worn off. I then began to drink a lot, using alcohol as a coping mechanism. But I have an amazing family and friends who rallied around me. As I am chronic, and potentially on chemotherapy for life, I still have to cope every day.


What have you been told about your prognosis?

When I was diagnosed I was told I was lucky. I would just take pills every day for the rest of my life and they would keep me alive. But I’m a sensitive responder to medication, and I was very intolerant to the first treatment. Eleven years down the line I’ve been through all the different drug options to keep my body in a medically managed remission.


What treatment have you had?

Every type available in this country other than a transplant. The main treatment is with a clever, oral chemotherapy which means I have never lost my hair or looked like a ‘normal’ cancer patient. However, I have experienced horrible side effects and chronic fatigue dominates my life. The drug names are ridiculous, they are: Imatinib, Dasatinib, Ponatinib, Bosutinib and Nilotinib. I have also tried pegylated interferon and am waiting for a new drug to arrive at the hospital called Asciminib. I’ve also had various bone marrow tests plus IVF to harvest eggs which are currently frozen.


Are you satisfied with the medical care you have received – could any aspect have been improved?

My current consultant is amazing and goes above and beyond all the time. However, I had a less positive experience with my first two, who I felt didn’t listen to me sufficiently.


Did you feel the information you have received about your condition has been adequate?

In the beginning I was given loads of booklets to read, and my first consultant only spoke to me in doctor language, which was pretty challenging. But my current consultant is amazing and always takes time to go through results with me, and to look over previous ones. However, I’m not a patient who needs to know everything. My main priorities are my leukaemic rate, being allowed treatment breaks, and discussing whether I can lower my dose.


What do you find the most challenging aspect of living with a blood cancer?

I experience such bad chronic fatigue that a stem cell transplant has become an option. Also, it’s hard looking as I do. If I didn’t have hair, or had drug lines attached to me, there would be a visual reminder to people that I have cancer. And while it’s getting better, very few people know much about leukaemia or understand blood cancers. So explaining that I won’t die or lose my hair, but that I still take harsh medication every day can be a struggle for people to understand. Also, because I live in a medically managed remission, people think that I’m not on treatment any more, yet to cope every day I need 10-12 hours sleep every night.


Do you feel that having the condition has changed you in any way, or your outlook on life?

Without a doubt. I was only 22 when I was diagnosed so it’s hard to know who I would be without it. I know that I am not prepared to be unhappy. Refusing to be unhappy led me to quit my job and go back to university to train in what I do now. It has enabled me to see how strong and determined I really am, and it has given me a voice that I might not have had otherwise. I have had to think about fertility, and I have to plan every moment of the day. I can’t stand up for more than half an hour, and I walk more slowly than my parents. However, my leukaemia has made me proud of who I am, and it has made me me.


What advice would you share with fellow leukaemia patients?

Don’t let cancer be all of your life. Also, waiting rooms are boring and you will sit around for hours. Make sure you know where all the plug sockets are, the water machines and the café! Take a good book or a podcast to listen to. Remember to budget in time for pharmacy as well, that can add another hour to your appointment. And if you aren’t happy with your consultant, ask to change.


Have you been told about any clinical trials for the condition, and would you consider taking part?

When I was first diagnosed I was told about a trial and put under huge pressure to take part. I declined, and being told about it just three days after diagnosis was just too much to take in. I have been told about other trials since, but I’m not eligible, either because I’m not newly diagnosed, or because I would have to take the full dose of the drug, which I couldn’t do.


What is your greatest hope/fear for the future?

My greatest hope is that I find a treatment that works for me that doesn’t involve a stem cell transplant, or that a cure is discovered so I can come off treatment and get my life back.

My greatest fears are being tired for the rest of my life, staying single forever because I don’t meet someone who doesn’t care that I don’t drink, have to go to bed early and can’t do everything that someone else my age can. There is also the issue of children – at the moment there is no way I would be allowed the time off treatment to have a baby. The longest I have ever been allowed is six weeks. And finally, having a stem cell transplant that makes me worse than I am at the moment.


Credit: Pharma Times Magazine