Having only just registered on this site, I've been amazed and humbled at the stories of courage and cheerfulness in the face of considerable adversity. In comparison, my own experience of a blood cancer feels almost trivial, but it may be worth recounting as there appear to be no histories relating to the more obscure myeloproliferative neoplasms.
For anyone who has just received a diagnosis of one of these cancers, it may be useful to read one person's experience.
Symptoms & Diagnosis
Last year, around my 69th birthday,
Then a serious attack of dizziness and vomiting forced me to see one of our local GPs, who diagnosed an inner ear infection, but insisted on some blood tests to eliminate other possibilities. The GP also decided my blood pressure was too high and that needed treatment. Apparently, the preferred treatment is not recommended for anyone with any heart problems, and it also looked as if I had a heart murmur. All very worrying, not helped by the doctor's approach, which was to pass me between various clinics like a parcel, with no explanation or discussion.
Fortunately, the coronary clinic decided the heart murmur was not anything to worry about, and one of the other GPs was much more forthcoming in discussing the details. However, I should be grateful to the first one at least for insisting on the blood test, as this revealed a very high platelet count and a need to visit the haematology department of Aberdeen Royal Infirmary. The specialists there immediately diagnosed essential thrombocythemia (no idea what is essential about it!) and were extremely helpful, explaining the likely prognosis and the pros and cons of different treatments.
Treatment & Side effects
As a result, after some delays, a daily dose of the chemotherapy hydroxycarbamide was started, and I awaited the onset of the multitude of threatened side effects that are mentioned in the literature. After a short period for my gut flora to adjust, there have been no noticeable side-effects and after increasing the hydroxycarbamide dose in stages to 1g per day, my platelet count had come down sufficiently for the specialists to decide it was stable and higher dosage was probably not advisable in view of the risk of reduced red cell counts.
Regular blood tests and hospital appointments are now the order of the day, but so far, all seems to be going well. Of course, there is always the concern that the condition can develop into full blown leukaemia and the probability of this is slightly increased by the chemotherapy, but that is a bridge to be crossed if and when it occurs.
Living with thrombocythemia
I have probably been very lucky; thrombocythemia seems to be one of the blood cancers which is relatively easy to treat and my system has responded to the hydroxycarbamide without problems. It may be relevant that prior to last year, my health had been pretty good; having a good knowledge of nutrition meant that our family diet was good, with a relatively low meat intake and a lot of fresh fruit, vegetables and dietary fibre. It seems that appetite has been affected by the thrombocythemia, so I tend to feel more hungry and eat more, but am not putting on weight so far.
Cycling, walking and gardening all play their part in maintaining reasonable physical fitness and to celebrate my 70th birthday, my daughter and her dog led me up Lochnagar, probably my first Munro, a 20km walk with an altitude gain of 800m.
So if you do get a diagnosis of a MPN, my advice would be to talk to your specialist, make sure you understand the pros and cons of treatment, and try to keep fit. Maybe you will be as lucky as, so far, I have been.