I was Diagnosed with CLL at 47 while investigating the cause of other more pressing issues and remain untreated today, I believe this may be the case for a while. Learning and spending time with others with CLL here and at group meetings has encouraged my passion to share information and support with people experiencing the specific challenges diagnosis and living with CLL brings.
ARE YOU AFFECTED BY CLL OR ITS SUBTYPES?
Join us at ; CLL, SLL, HCL , part of the Macmillan online community. an active group for those affected by CLL and it's sub types. A very friendly place to share friendship support and learning.
Also. http://cllsupport.healthunlocked.com a new UK and international on-line community where we now number 260 , share the latest news and views, ask questions, blog and participate in polls to aid CLL support.
RECENTLY DIAGNOSED? LOOKING FOR RELIABLE UNDERSTANDABLE INFORMATION?
Read the NEW CLL patient information booklet from Lymphoma and Leukaemia research:
http://leukaemialymphomaresearch.org.uk/sites/default/files/cll_july_2012_3.pdf
CLL Support association: cllsupport.org.uk
What was "watch and wait" is now "watch and live", much has changed for me , so many have helped me learn about the disease and how to live again. With time this dreadful disease has opened many doors.
"Patients with CLL on watchful waiting experience levels of depression, anxiety and quality of life similar to those in active treatment; our qualitative approach has illuminated some of the reasons for the negative psychological impacts. We relate our findings to perceptions of the illness state, doctor–patient communication, and work pressure. We recommend that specialists could better support patients by acknowledging psychological impacts of CLL, actively listening to patients’ concerns, and meeting their needs for information."
The recent paper by the OXford study group last year. Incurable, invisible and inconclusive: watchful waiting for chronic lymphocytic leukaemia and implications for doctor-patient communication. attemps to address much of what we experience.
It is hard carrying on in a limbo world after diagnosis, dismissing the wait and worry element feeling a little changed and perhaps developing symptoms and the challenges that our disease can bring. Sharing space together here does help us make adjustments in a world without understanding, when there are consequences of people closest to us not understanding what the normal looking person in front of them is experiencing physically and mentally.
Is it fair to expect them to? The consequences for loved ones/supporters/carers of our diagnosis also affects them deeply and makes their life more challenging . With this in mind we have come together to help each other, share our experiences learn from each other and share information and support.
CLL, SLL, HCL are serious conditions that may cause much heart ache. The friendship and support of friends in our group does help me live with and understand the disease. We can make many adjustments and get used to an unusual treatment approach to cancer, which is effective in allowing us to live a long life. It is not always a stroll in the park and much is thrown up living with the disease and treatment that is very specific to our type of Cancer. Together we do help each other.
Many are working towards us receiving a fair shake and there are several exciting novel therapies coming into trial. CLL although incurable bar a stem cell transplant has attracted some of the best minds in the world to tackle effectively how to treat the condition. It appears the ease of access to our continuous supply of tumour cells will not only benefit research into our own treatments but has made CLL research the place to be if you are a cancer researcher.
It seems that much is coming to a head in CLL research and development of new therapies. improved genetic testing will lead to better assessment of the individual characteristics of a patients disease and help direct the novel targeted therapies in development, We are entering a new era of CLL medicine There are several non-chemo type treatment types showing great promise, less toxic treatments are beginning to commence clinical trials in the UK for some, knowledge is growing fast. They are getting closer.
Watch this current news video; NEW, targeted oral medicines promise to revolutionize the treatment of chronic lymphocytic leukaemia.
Dr Claire Dearden , Consultant Haematologist and Head of the Chronic Lymphocytic Leukaemia (CLL) Unit at The Royal Marsden shows her excitement with these latest developments and discusses how they are now entering UK clinical trial for treating some with CLL.
http://www.youtube.com/watch?v=QRhsDxHtyNw
If you are affected by CLL (chronic lymphocyticleukaemia), SLL (small lymphocytic lymphoma), or HCL(hairy cell leukaemia), this is the group for you. A space to visit where you can find others, ask questions, just share what's on your mind or just be.
Come Join us
Nick
