I guess I knew something wasn’t quite right after a routine eye test on 4th July 2016. The optician spotted lesions on my retinas and suggested that I see my GP. The optician recommended that I push for a blood test as she thought it could be diabetes.
A week later on 9th July, I saw my GP. He didn’t give any opinion about what had caused the lesions other than to say he thought it was unlikely to be diabetes. Not long after my blood test, I had a call from my local hospital (Royal Berkshire, Reading) to say that an appointment had been arranged for me on the 13th with a haematologist. After various further blood tests, an ultrasound of my spleen and a bone marrow biopsy, I was formally diagnosed with chronic myeloid leukaemia (CML).
Being diagnosed with CML was a complete shock. I had always thought of myself as being pretty healthy (I did running, walking, yoga), so to find myself with cancer was difficult to take in even though it was reassuring to know that I had a good prognosis.
The first three months felt very ‘mechanical’. Frequent blood tests and hospital appointments, as well as getting used to taking imatinib. I was off work for this period. I knew I had cancer but somehow the regime of tests and appointments was foremost in my mind rather than the underlying reason I was having them. Severe initial side effects (heartburn, reflux, nausea, shortage of breath, tiredness) lessened as my body got more familiar with imatinib. I achieved complete cytogenic response during this period and felt stronger.
I returned to work in October 2016, initially three days a week, but found this hard. Having the strength to complete a working day was difficult sometimes. Travel with work also required some thought, for example the logistics of fitting in breakfast so I could take my imatinib and allow time for any immediate side effects. For the next six months my BCR-ABL continued to come down, to 0.4, and I felt strong enough to increase to four days a week.
In July 2017, nine months after returning to work, I was put at risk of redundancy whilst still unable to work five days a week. My next PCR test, a couple of weeks later, showed a jump in my BCR-ABL back up to 1. I will never know whether the stress of redundancy contributed to this, but I certainly don’t think my former employer showed any degree of humanity towards me (after 19 years of service).
The next six months were very difficult. A long drawn out consultation and notice period, including being told by HR that ‘having cancer didn’t mean I would get any special treatment’. My BCR-ABL moved up and down and my response to imatinib definitely slowed down. For the first time, I felt that my life was defined by my cancer.
In January 2018, my notice period was complete, and I was without a job. The next month or so was equally difficult as I struggled to come to terms with having cancer and needing to find a new job at the same time. Although I had always known that I would have CML for life, I had never given much thought to the reality that I would have it for, maybe, the next 30 years. When that penny dropped, it was quite an eye-opener. I am not sure whether I was actually depressed but I certainly felt miserable and down.
I began to get involved in some unpaid activities – helping a friend start a business and doing some ad-hoc stuff with Leukaemia Care (reviewing documents etc). This really gave me the lift I needed.
Working for charities has proved to be very fulfilling in ways that my previous corporate job wasn’t. I am much happier and my BCR-ABL resumed its downward trend, albeit still slowly. I am working more sporadically but on average about three days a week. This feels like the right amount for now; it gives me space to accommodate my CML when I need to and share my experiences with others (like I am doing now).
My haematologist calls me a ‘slow responder’ but he has been very understanding of my wish to give imatinib the best possible chance. The 0.1% BCR-ABL figure seems an arbitrary one chosen by the medical profession and the pharmaceutical industry. I have just achieved it but at some considerable cost to my quality of life over the past three months due to an increased imatinib dosage. Sometimes I wonder whether reaching such an arbitrary figure is worth it given the increased side effects. Ten years ago, a BCR-ABL of less than one would have been considered a safe place but not now, primarily because of the advent of newer, more powerful drugs. I have been reluctant to change because I know these alternative TKIs can have potentially more serious side effects such as heart, liver, and lung problems. I am hoping the 600mg imatinib dosage will take me further below 0.1 so that I can revert to 400mg.
Looking back to the time just after diagnosis, I think I had a somewhat rose-tinted view that I would just take a tablet each day, my BCR-ABL would come down, the side effects would lessen and my life would get back to what it was before. I still think that is not a bad way to look at the initial three months. My own experience and being part of support groups (Facebook and at Hammersmith) has taught me that life is now much more nuanced. I may never have the same quality of life as my other self without CML but, despite the inevitable ups and downs, I am lucky and am learning to manage my CML.
I should say I have had fantastic support from family, friends and especially my wife. Ultimately getting my head around the fact that I may have cancer for 30 years is still mind blowing. My father and both of my parents in law died from cancer so I am aware some patients don’t get that option, but living with cancer for that long, with the reduced quality of life that accompanies it, won’t be easy.
From other stories I have heard about fellow CMLers, I know I have been lucky. Others have had worse side effects, worse employment experiences, financial hardship and have needed to try many TKIs. At diagnosis, my haematologist said that ‘if you are going to get leukaemia, CML is the one to get’, so to some degree we have all been lucky. I will need strength, optimism and patience, the latter of which I seem to have less of these days due to imatinib. I will also need the continued support of family, friends, Leukaemia Care and the CML community I have become part of. Having CML has made me, and my wife, think more about what we really want from life. We are in the early stages of making some big decisions about where we want to live and what we want to do. Strangely, having CML has made me more aware of the downsides of some other aspects of my life that I now feel I need to change.
My own experience tells me that Spot Leukaemia is important. I often think that had it not been for a regular eye test I may not have been diagnosed and treated until much later. I had no idea that I might have leukaemia because I was unaware that symptoms I put down to ‘working too hard’ and ‘getting old’ could be a sign of cancer.
Only after my blood test (when I was told I had a white blood cell count of 169, 17 times higher than it should be) did I suspect leukaemia. Prior to my eye test and subsequent diagnosis, I wasn’t aware of any symptoms. It soon became apparent after talking to my haematologist that I had been experiencing one or more symptoms without realising it, namely: tiredness, particularly at work, occasional night sweats and unexplained weight loss – I had lost a stone in weight. I didn’t go to my GP because I just thought that they were related to work and warmer summer nights. I thought the weight loss was the sign of something good.
I shudder to think that I would have completely ignored the symptoms (tiredness, shortness of breath, hot sweats, weight loss). I would have been unlikely to go to my GP until something much more serious happened, perhaps as a result of being in blast or accelerated phase. At that stage, my treatment options would have been more limited and my prognosis much worse.
I want others who are experiencing these symptoms to have the confidence to go to their GP and ask for a simple blood test that will highlight any problems and lead to further investigations. I want GPs to be more aware that a combination of what might appear to be benign symptoms, attributable in themselves to other ailments, can be a sign of something much more serious. Early intervention by patients and GPs will save lives.
Update from Colin
Colin Heyes was diagnosed with chronic myeloid leukaemia (CML) in July 2016. He last shared his story with Leukaemia Care in August 2019, three years after his diagnosis. For World CML Day, Colin is sharing an update with us about life since, as well as advice from his experience as a CML patient.
When I last shared my story my response levels were not what I had hoped for and I was in the middle of a drug dosage increase, as an alternative to switching drugs, to see if my response level would come down to a safe level.
Since diagnosis, I had been taking the standard daily dose of a tyrosine kinase inhibitor (TKI) called imatinib, at 400mg. Imatinib is the first generation TKI that transformed the life expectancy of CML patients when it was licensed in 2001. For CML patients the response level is a measure of the BCR-ABL mutation in your blood. The target to be in a safe place is below 0.1 and I was just above that level. The usual course of action would be to switch to a more powerful, second-generation TKI, but I was reluctant to do this. These more powerful drugs can have more severe side effects which can cause heart and lung problems. After conversations with my haematologist, we agreed to increase my imatinib dosage to 600mg per day for the next 12 months rather than switch TKIs.
Thankfully the increased dosage did the trick. My BCR-ABL dropped to 0.07 during this period, to a safe place. The downside was a huge increase in the side effects of imatinib. These included increased nausea, shortness of breath, general tiredness, brain fog and fatigue. I realised that my quality of life was being seriously impaired by the increased dosage.
At the end of the 12-month period, in November 2019, my haematologist wanted to keep with the higher dosage for longer but I explained the effect this was having on my life, so he agreed to reduce it back to the standard 400 mg per day. Since then, my quality of life has significantly improved and my BCR-ABL has continued to fall. I am now approaching a deep, rather than major molecular response.
More generally I have found that work has become more difficult. I work for a software company, managing all aspects of our software development and consultancy. I work part-time, 3 days per week.
We were fortunate enough to have been very busy during the Covid-19 pandemic and I am able to work from home. Our workload means that I have needed to work more than 3 days a week for significant periods. I have found that even a small extra amount of work makes me much more tired and prone to fatigue. I find that my non-working days have increasingly been ones where my body seems to say, ‘no more!’. I have found that my job seems to demand more than 3 days per week from me and my body is not able to cope. My boss is generally sympathetic, but he does not seem to understand the impact that this is having. Since the start of 2021, I have taken a much firmer, self-preservation approach and refused to work more than 3 days per week.
Living in the Covid pandemic has also been hard. I have managed to avoid getting Covid and am now fully vaccinated, but the early days last year were scary. I even missed a blood test because I was not happy with the social distancing measures at my local health centre. Now that all restrictions have been removed, I will continue to be very cautious and only socialise where I feel it is ‘CML safe’. I know getting Covid won’t kill me but if my experience with my second jab is anything to go by, it will make me very ill.
Reflecting on my experience, I don’t think I would have done anything differently. When a switch to another TKI was discussed, I held my ground and looked for alternatives. Fortunately, my haematologist was open to this and we found some middle ground. Sometimes I think I am being too cautious with Covid. I know we ‘CMLers’ are much better protected than other leukaemia patients but I guess I don’t want to risk anything.
When I was diagnosed a few blast cells were detected. Blast cells can complicate the treatment options and high numbers can lead to acute rather than chronic leukaemia. The longer the CML is undiagnosed the more chance of blast cells. My haematologist thought I had had CML for about 4 months prior to diagnosis but I wasn’t aware, until the eye test and diagnosis, that some of my symptoms (fatigue, night sweats, weight loss) could be leukaemia.
My diagnosis was through an eye test when lesions with Roth spots were observed by the optician. There was no emergency or illness, just a simple blood test and biopsy to confirm I had CML. I am aware others have been rushed to A&E in an emergency because of undetected symptoms. Early diagnosis spares us the trauma of A&E, the threat of progression to acute leukaemia and the need for more oppressive treatments. I can only thank my optician for being so alert and recommending I have a blood test as soon as possible.
I am less optimistic since my diagnosis but as I learn to live with the side effects of a very manageable, chronic condition I am increasingly confident that I will live a near-normal life with CML. Luckily, I won’t die from it as my haematologist once told me! I have bad days when I am really down but that goes with the territory.
The Covid-19 pandemic has had much more of an impact on my mental health. Being classed as ‘clinically extremely vulnerable’ and receiving support calls from my local council adult social care has been far worse than being told I had CML.
Don’t hesitate if you suspect something’s up. If it turns out to be nothing, then that can only be a good thing. Be aware that leukaemia symptoms are often shared with other conditions. Suggest that your GP sets up a full blood count test. Mine highlighted a really high white blood cell count, a classic sign of leukaemia, which explained most of my symptoms.
Seek help, and not just from your healthcare team. Use Leukaemia Care and the support groups that LC runs. My first visit to the LC support group at Hammersmith was a tremendous boost to my confidence and outlook. The Facebook CML support group is fantastic.
Try not to think too far ahead in the early days when the focus is on getting your blood back to normal. Take each day/week as it comes and don’t worry about options that may come along many years later, e.g., going treatment free. There will be ups and downs, but the treatment options are very good and getting better all the time.
Share your diagnosis with people. They will understand the situation you are in and support you. They will learn to recognise when you are having a bad day and will help you. They will also learn to respect your strength as you learn to live with cancer.
I think #SpotLeukaemia is important because:
- It highlights the main symptoms of leukaemia
- It explains that these are not unique to leukaemia but you should seek help to find out for sure
- It encourages potential sufferers to go to their GP and find out
- It encourages GPs to take reports of tiredness, fatigue, unexplained weight loss and night sweats etc. seriously
- It encourages patients to request a blood test to find out more