So for my second to last ‘official 40B440’ post, I thought I’d go back to the grassroots and tell you some bits and pieces about myeloma and Myeloma UK that you didn’t (or perhaps did!) know. I hope they’re of some interest to you! Some of them I didn’t know about either!
To start with, a brief overview of myeloma though….Myeloma, also known as multiple myeloma, is a cancer arising from plasma cells, a type of cell made in the bone marrow that forms part of your immune system. Unlike many other cancers, myeloma does not exist as a lump or tumour which can often confuse people.
The current treatment of multiple myeloma has improved markedly compared with the rhubarb pill and infusion of orange peel that was given to Sarah Newbury in 1844! Whatever we may think about our treatment regimes nowadays, we have definitely moved on!
There are approximately 4,800 people diagnosed with myeloma every year in the UK. It is the second most common form of bone marrow cancer, but only represents 1% of all cancers
20% of people die of myeloma within the first 60 days of diagnosis. This is largely due to late diagnosis allowing progression of the disease.
Since my diagnosis in 2009, I am pleased to say that the average life expectancy has now moved from 2-5 years, to around 7 years…..and is improving each year as new treatments are being identified. In fact, survival rates are increasing faster than in any other cancer in the UK!!! Great news for many myeloma patients.
Myeloma is a relapsing-remitting cancer. This means there are periods when the myeloma is causing symptoms and needs to be treated, followed by periods of stable disease where the myeloma does not cause symptoms and does not require treatment
The causes of myeloma are not fully understood but it is thought to be caused by an interaction of both genetic and environmental factors
On average GP’s will only see one patient with myeloma in their entire career. This is why awareness is absolutely crucial.
The ring around the “My” in the Myeloma UK logo emphasises the individual nature of myeloma (every patient’s experience of the disease is unique) and represents a plasma cell, a type of white blood cell that is part of the immune system and can transform into a myeloma cell.
Myeloma UK established the Clinical Trial Network in 2009 to prioritise the most promising drugs in development and get those treatments to myeloma patients in the UK faster. The CTN continues to grow and has halved the average time it takes to set up a clinical trial. This is critical with a cancer that sadly is taking many lives each year.
Myeloma UK receives no government or NHS funding. Their work is made possible by the generous support of fundraisers (yes, that’s us!) and donors and they work strategically to make every penny count.
The majority of funds is dedicated to research into better treatments. The Myeloma Research Centre at The Institute of Cancer Research, London is a world-leader in the field of myeloma biology and genetics.
If you would like to sponsor me with my #40ChallengesB440, to support Myeloma UK and help make myeloma history, please either
text ‘DEBG99 £X’ to 70070
e.g ‘DEBG99 £40′ if you want to donate £40