Hi J,
Like Richard and Jacqui have said, you will find support from members of this forum who will help you to come to terms with your diagnosis.
Whilst it is true that the incidence number is around 580-600 people diagnosed with CML in the UK every year, the prognosis is now very good and, so good that prevalence number- i.e people living with CML in the UK (and the rest of the world)- is growing every year. This means that although CML is rare as well as life-threatening there are increasingly more people living with the disease in the long term than at any time prior to 2000 and the introduction of TKI therapy.
Re prognosis, below is a snip from an article (find the link on the home page) which should reassure you.
"The expanding options for front-line treatment in patients with newly diagnosed CML"
Abstract
The past decade has seen remarkable advances in the treatment of chronic myeloid leukemia (CML). The discovery of the underlying cause of CML, a chromosomal translocation resulting in the expression of an aberrant tyrosine kinase, has enabled the rational development of targeted therapy with tyrosine kinase inhibitors (TKIs).
The first available TKI, imatinib, dramatically improved survival rates and demonstrated the potential for long-term treatment. A number of additional strategies have been tested to further maximize outcomes in patients with newly diagnosed CML, including newer TKIs, imatinib dose escalation, and combination therapy.
The advanced, more potent TKIs, nilotinib and dasatinib, have proven effective for newly diagnosed patients and for those who experience inadequate response or intolerance to imatinib. Randomized phase 3 studies have shown that nilotinib and dasatinib are more efficacious than imatinib in achieving primary study endpoints.
Nilotinib was superior to imatinib in the rate of major molecular response at 12 months; dasatinib was superior to imatinib in the rate of complete cytogenetic response by 12 months.
These phase 3 studies are ongoing to further define longer-term efficacy and safety. Research on additional contributing signaling pathways in CML, T315I mutations, and other causes of treatment resistance has identified additional potential treatments that are now in early stages of clinical development, with encouraging preliminary results.
With continued advances, it is conceivable that the ultimate goal – a cure for CML – is in our sights."
So, it is more than likely that you will live your normal life span and will not die of CML- providing you continue to take imatinib (or any other TKI) every day.
The way to counter the major side effect- nausea - is, as Richard has already advised, to take imatinib with your largest meal of the day, which is for most people, dinner.
Drinking lots of plain water is essential, in addition to other drinks such as juice, tea coffee etc.
By the way, grapefruit- both fruit and juice- should not be eaten/drunk when taking imatinib as it can increase the plasma levels of the drug and cause increased side effects. Some people do continue to drink grapefruit juice but at a completely different time of day from when they take the drug.
All in all, the side effects are manageable for most people, and as time goes on you will learn how to counter any that you might suffer, in your own way.
Be careful with painkillers- it seems from recently published research that ibuprofen actually blocks the cell uptake of imatinib. Paracetamol is OK, although you should never exceed the dose as recommended- but that goes for everyone, even those without CML because paracetamol overdoses can damage the liver. Imatinib and other TKIs (nilotinib and dasatinib) are metabolised by the liver so you can see why you should be aware of other drugs you might take- particularly 'over the counter' drugs.
Good luck with your upcoming test results,
Best wishes,
Sandy
