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I was a very busy Retail Manager as well as a dad to young daughters when my wife noticed some unusual bruising on my arms and legs, and I was appearing more tired than usual. I had also had a few infections over the last 18 months to which my GP raised a concern and actually called me at work to arrange a blood test.
I always remember the blood test and a call from an out of hours doctor on the Wednesday telling me to go to A&E as my white blood count was off the charts. I was admitted the same night and then in the early hours of Thursday morning a doctor told me I had cancer. I will never forget that moment on my own thinking, “how do I tell my wife and children?”.
Initially it was thought I had acute myeloid leukaemia (AML), however, after a bone marrow aspiration, which is taken from your lower back or hip, it was confirmed I had hronic myeloid leukaemia (CML). I was in total shock as was my wife, family and friends. Previously I had not seemed unwell, however, my blood results and in particular my white blood count showed I was in fact very poorly. I was told by my haematologist that it was a chronic blood cancer and was treatable. Those words were repeated by my wife to me many times, as all I could hear was cancer and kept questioning if I would see my children grow up.
I commenced a course of hydroxycarbamide to lower my white blood count. It was over 300 at diagnosis and I also had an enlarged spleen, both of which were symptoms of my leukaemia. My consultant explained that a group of drugs called TKIs (tyrosine kinase inhibitors) were the preferred treatment option and I would start taking imatinib daily. I would then have regular blood tests and three-monthly reviews to check my BCR-ABL results (the faulty gene that was the marker for CML). Hopefully the TKI would reduce the number of leukaemia cells within my bone marrow and get me into remission.
My journey, it seemed, was not destined to be as straightforward as we thought it may have been. My first three-month review confirmed imatinib had failed to lower the BCR-ABL to the guideline level and I was moved onto a second generation TKI and more potent treatment called nilotinib. However, after four weeks, it was decided the toxicities of the drug were impacting me quite significantly and I was changed to dasatinib, another second generation TKI.
As with all the treatments available, they each have their own side effects. Unfortunately I have suffered from fatigue frequently (a type of exhaustion that does not always improve with rest or sleep) as well as muscle and joint discomfort, skin changes and gastric upset. My three-monthly reviews were now showing a slow reduction in BCR-ABL, however, due to the slow response, I was moved onto bosutinib and now ponatinib (both third generation TKIs).
Despite currently taking ponatinib daily, which has lowered my BCR-ABL, I have not reached a Major Molecular Remission and therefore been referred for a stem cell transplant. This is planned for next year which hopefully will provide me with a possible cure for my CML, albeit not the route I was expecting at diagnosis. I am again very thankful that I have an option available, and a donor match, which I believe will be really important for the success of this procedure.
I understand that living well with leukaemia is like a rollercoaster and there are highs as well as lows and at times we are just hanging onto the ride. The three-monthly reviews have been difficult mentally as my CML has been stubborn, but I have learned that showing up
every day to blood cancer is something to be proud of. And, with the support and kindness of family, friends and Leukaemia Care, I am always reminded that I have people who truly care beside me.
When first diagnosed I found reading patient stories to be both inspirational and reassuring and I was concerned my story may not be as helpful to other newly diagnosed patients with CML. Even though my experience has not been as straightforward as we thought, I think it’s important to know and share that there is an option and a plan, and to be hopeful for the future.
My amazing wife Kelly Ann has been so strong and positive, always there by my side. Understanding that leukaemia can be a chronic disease was quite difficult for people to grasp and I have seen how the uncertainty has been difficult for not only myself but my loved ones, too.
We have had a challenging time and you do ask the question, “why us?” however you do find a way to get through the more difficult days. It’s so important to seek support from people who can really understand and empathise. It really helps to feel you are not on your own.
Leukaemia Care has been truly amazing with their information, buddy support, sharing patient experiences, and in particular their Helpline Nurse, Fiona. She is my go-to nurse who is so supportive and always takes the time to remind me how well we are coping with our situation. I understand everyone’s experience will be different; however, I have found great support in talking to my buddy as well and have found that Leukaemia Care are so kind and understanding.
I used to live life at 100mph and now have taken things much more slowly to be able to focus on the important things. It really is okay to be kind to yourself when you need to.