When I was diagnosed with chronic myeloid leukaemia in 2011 at the age of 45, I was fit, well and had no idea that actually I was seriously ill. I was working full time and playing squash three times a week. I had commented to my wife that I felt tired, however I had a younger family and was working hard so really didn’t think much more about it.
Over the course of a few months my weight had begun to fall however given that it was not a significant reduction and my playing of squash I didn’t dwell on this. I was also having occasional night sweats, however once more it was summer, so again it was just one of those things.
My diagnosis came about as some 15 years previously I had suffered a detached retina. Over the course of the few days before diagnosis I had started having flashing in my eye and so thought best to go to the eye hospital to have this checked. The eye hospital examined me and did, what I felt to be a cursory blood test on my leaving. I received a phone call a few hours later telling me to get to the hospital first thing in the morning. Leukaemia had not occurred to me, I just thought it was to do with my eye.
My diagnosis was given immediately by an excellent helpful doctor who spent plenty of time with me. I took the news very well and very much with a view of what are we going to do about it.
Bizarrely I was diagnosed on Wold CML Day, the 22nd September, this reflecting the translocation of chromosomes which CML patients have, being chromosome 9 and 22 was quite ironic that I shared the same date.
I decided a few days later to move from the NHS to private health insurance, which in hindsight was a mistake. I had a bone marrow biopsy, my CML confirmed and then I was then placed on to Imatinib a first generation Tyrosone Kinase Inhibitor, I was very fortunate that I had almost no side effects both initially and throughout my treatment other than some sever bone pain in the first two weeks after commencing Imatinib.
I was also very lucky in the sense that I was diagnosed on Wednesday, took Thursday and Friday off work to adjust to my new life and subsequently returned to work on the Monday. I can’t believe and it is a credit to the drugs, and research over the years to say that I have not had a single day off for any illness subsequently.
I was keen to return to squash as soon as possible and was able to do this after about three to four weeks, once my spleen had reduced to a normal size. On diagnosis it was enlarged, as is usually the case with CML. My white blood count, which should be in the range of 3 to 10, stood at 146 therefore my blood was quite thick, this had in fact caused the issue with my eyes initially, as the blood was too thick for the small veins.
Blood tests & PCRs
My first PCR test was done three months later and my numbers had reduced to about 35%, the goal was 10% at this point. Nothing to do with my PCR result, I decided to return to the NHS as I felt it was inevitable that I would have to eventually, and also I had have the ability to transfer my care to a specialist blood cancer hospital, The Queen Elizabeth Birmingham, I was placed under the care of Professor Craddock whom was great.
Over the course of the next 12 months my PCR results reduced slowly, however steadily, I did not achieve the stated goals at that time, which have subsequently become shorter in time scale, however I did achieve a complete cytogenetic response at 12 months, and just about a major molecular response at 18 months or so, so all in all my journey was more the tortoise than the hare. I did consider a change of drug to a newer, faster acting TKI but decided not to as I was so well and the numbers were coming down.
Five years on and life is good, I work full time, have no side effects, play squash three times a week and live a completely normal life. I am one of the lucky ones, and know this.
Results wise, after approximately three years I was offered the opportunity to enrol on the Destiny Trial, this being a trial where patients who have obtained low enough levels reduce dose by half for twelve months, and then cease treatment at the end of this period. I just about managed to keep my PCR results under 0.1% until stopping, however only one month after stopping my numbers rose so I recommenced treatment.
This is three months ago and I am pleased to say that my PCR results are under 0.1% again and hopefully dropping still. I am very confident that they will do. I would and am sure will try again, in time. Taking the drug does not bother me, its more the fact that we do not know what effect TKIs will have on us in the long term eg 40 years I am likely to have ahead.
World CML Day
As mentioned above World CML Day this year will be five years since my diagnosis. World CML Day is an important event to help both raise awareness of CML in the UK and worldwide. Many patient groups have joined together to facilitate World CML Day and through active involvement we have brought together patient groups from around the world together with doctors and scientists which undoubtedly has helped with treatment options, knowledge and care. Various countries undertake differing activities.
Sadly access to care and even diagnostic testing varies significantly worldwide, various organisations worldwide are undertaking outstanding work to improve this. As a patient advocate myself involved with the CML advocates network, Bloodwise and CML support it really has opened my eyes and made me realise how fortunate we are in the UK to have excellent access to TKI treatment as well as testing and physicians, certainly in my view we are blessed to have the NHS and charitable organisations such as Bloodwise.
Becoming a Bloodwise Ambassador
Whilst I have worked with Leukaemia Lymphoma Research over the past five years, a couple of months ago I was fortunate enough to be approached by Bloodwise, formally LLR and asked if I would join their patient ambassador programme. I was delighted and feel privileged to have been asked, and to be able to do so. Bloodwise’s work both for patients, support, access to treatment, funded nurses programme and research is second to none, whilst my role as an ambassador is still very new I am hoping to provide support to fellow patients, attend conferences to provide information, help and knowledge and of course raise much needed funds.
During my treatments I found the support provided by charitable organisations, as well as on line groups very beneficial. To me is was more sharing knowledge rather than actual support, however I also found that some sites were not particularly communicative in that patients did not involve themselves with each other, or they were to USA based who have such a different health system. Potentially due to a lack of response on some larger sites initially patients then do not return to it. Alternatively I found other sights and the information they contain to be very deep, and whilst I have a good understanding of my disease something a little lighter was perhaps needed.
So on my first anniversary I decided to set up a support group called CML UK. This group was founded on Facebook with a few members. I actively encouraged conversation, guidance, assistance, help and more than anything support.
The group was founded on World CML Day and therefore is four years old today. During this time we have grown to nearly 1,600 members and provide a lively, interesting forum where patients can share good news, worries, results and ask for help or clarification of anything. The group has been outstanding, we are a friendly bunch and engage in active help and guidance, it is so nice to hear so many positive stories, as the outlook for CML is so good these days particularly for new patients when everything is so new and scary, and you very much feel that you may die, to be able to go on line and chat freely and see how well most patients are doing has been great.
We are a closed group therefore everything that is said stays within the group and does not appear on peoples own Facebook timeline. Whilst many people do not have Facebook accounts we have found often newly diagnosed patients set an account up specifically to join us, if you are a patient, relative or carer then please feel free to join our CML UK Facebook group.
Establishing the group has enabled us to join the CML advocates network and involve ourselves more with Bloodwise, CML Support.org and of course World CML Day.
The outlook for CML patients is very good. Whilst having this illness is not what I would have chosen, it has provided me the opportunity to meet with some fabulous fellow patients and advocates and appreciate life fully. I very much look forward to my next 40+ years.