Dick M, age 77
At the age of 69 I appeared to be very fit and active, cycling, hill and dog walking and managing a half-acre garden. However, one morning I woke up with severe vertigo, had difficulty standing and was vomiting at the least provocation. A visit to my GP suggested it was an inner-ear infection, but fortunately she decided to take a blood sample as a precaution. This revealed my platelets were about 1.5 million and I was referred to the hospital haematology department. There they were able to use additional information from the recently instituted CALR test, which confirmed Essential Thrombocythaemia, with the CALR deletion mutation.
At first I was surprised and worried. However, the head of the Haematology Department was fantastic and spent time discussing options and prognoses, treating me as an adult, keeping me well informed about treatment options.
Initially I was started on daily hydroxycarbamide which was gradually increased from 500mg up to 1000mg daily, plus 75mg aspirin. I also had three monthly blood tests and face-to-face consultations. These have now changed to include the same blood test regime but with a telephone follow-up and, until the last couple of years, an annual face to face appointment.
Unfortunately, in 2017 it transpired that I also had prostate cancer. There were concerns that radiotherapy treatment for this could potentially interact with the thrombocythaemia and my treatment, which could complicate matters. Fortunately once again, I was able to draw on local medical expertise and the professional literature enabled me to make informed decisions about treatment.
At the beginning of 2021, the need for radiotherapy for the prostate cancer became more urgent. This led to telephone discussions with my haematologist about stopping hydroxycarbamide to avoid it amplifying the cytotoxic effects of the radiotherapy. Stopping hydroxycarbamide led to a rapid increase in platelets so it was decided that I should resume a lower dose of hydroxycarbamide during therapy and this seems enough for the time being. The outlook for the prostate cancer is still unclear.
When I was first diagnosed, as a retired academic, it felt essential to find out as much as possible about the condition which I did through MPN Voice and what was then, Leukaemia and Lymphoma Research, now Blood Cancer UK. I also delved into the specialist medical literature, which was invaluable as a supply of additional information. I was subsequently involved in critical reading followed by some editorial work on patient information material and this was enormously helpful in enabling me to discuss things in detail with the hospital specialists. The rapport with them that this seemed to establish has been very helpful throughout.
Since I was diagnosed I can’t say there have been any MPN related challenges, apart from those associated with the second cancer. My platelets have been pretty stable and I have no significant side effects from the drugs apart from brittle nails and it was possible to live much as before, except for need to remember pills. Unfortunately, the treatment for prostate cancer has had more adverse effect such as muscle loss and now, increasing fatigue.