Get the balance right. Combine the best of conventional medication with complementary therapies to find a plan that works for you. Many people with myeloproliferative neoplasms (MPNs) are frustrated with the lack of choice and potential side effects associated with conventional treatments. Others feel concerned about the long-term risks posed by medications. Beyond conventional treatment…
When you were first diagnosed your haematologist may have told you the disheartening news that “there is no cure.” It’s true that none of the current medications available can eradicate your myeloproliferative neoplasm (MPN) but new research is pointing the way toward better treatments and we hope one day a real cure for patients with…
Myeloproliferative neoplasms (MPNs) are usually diagnosed in older patients, but people who are young enough to conceive need to consider their contraceptive choices carefully, whilst women approaching menopause and offered hormone replacement therapy (HRT) also need to be informed of the potential added risks of HRT. Contraceptives – considerations/risks As with any decision concerning contraception…
It’s not uncommon to feel bewildered when you first learn you have essential thrombocythaemia (ET), polycythaemia vera (PV) or myelofibrosis (MF). The best way to fight back is to learn more about these disorders, understand the treatment options available to you and discover ways to feel your best. Newly diagnosed FAQs What are these blood…
Although there are currently no medications that can completely cure an MPN, there are many treatment options available to you. The kind of medication that you need depends on which MPN you have, your general health and your personal situation. Some people with “low risk” MPNs may only need minimal medication, while others will need…
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…
I was diagnosed with ET in August 2000, aged 30. My only symptom at that time was priapism; (wikipedia.org/wiki/Priapism) originally lasting an hour or so and occurring three months apart but gradually developing into 2 or 3 times a week lasting up to 7 hours ! At that time I was being treated by a…
My name is Jeffrey and I was diagnosed with Primary Polycythaemia several years ago. (I can’t actually remember how many) having been called back to my doctor following blood tests for another completely separate problem. I remember the consultation well, “ Jeffrey you have elevated red blood cells and I need to send you to…
In June 2011 the haematology consultant at a London hospital suspected a myeloproliferative disorder because my platelet count had shot up from its normal range to 937 and he asked for a JAK2 screening. This was carried out later that month. On reviewing the test results in July, the JAK2 test was negative but there…
Jennie Barnes aged 25 has lived with essential thrombocythaemia (ET) since she was diagnosed at the age of 13. In November 2013 at a routine consultation she was told that this had transformed into leukaemia. In the weeks that followed Jennie wrote an honest and moving blog about the ups and downs accompanying that diagnosis…