As an active CLLSA member I have put together a few of my blogs showing my thoughts as I have journeyed through the transition of accepting my diagnosis and moving on. I hope this may help other CLL patients. We now have an online group forum; CLL, SLL, HCL
Jan 27th 2011 Making the adjustment
Feb 2011 waking up
July 27th 2011 Watch and Wait, is it the right name?
Realising that vitamin D levels could be an outcome indicator, led me into the world of prognostic indicators pretreatment, where I think I struggled for a while in making the transition to accepting the disease. As I began to realise how many markers could give indications of short term prognosis and that in the UK prognostic testing is not carried out outside of trials pretreatment. I commentated on a thread started by Chris Dwyer of http://cllcanada.ca ,on; http://www.cllforum.com/forum1/8599.html ,about the debate on whether prognostic markers are overrated. I have pasted this below:
Chaya Vencat has published her take, interpretation and opinion on Dr John Gribbens commentary on prognostic markers and included Professor Hamblin's in her review. It seems there is much differing opinion. http://updates.clltopics.org/3695-prognostic-indicators-who-when-what-and-why
on prognostic testing pretreatment I believe I fell into her A category, those who wish to learn and if not influence, be an informed party involved in the treatment decisions necessary as my disease develops. Her writing has at times been what enabled me to understand in detail, knowledge about the disease and the meaning behind the evidence. But then I hit the personal barrier I could not implement what I had learnt as I am within a totally different health care system and do not have the flexibility to manoeuvre, that you guys do. Chaya briefly explains how foreigners who's expectations have been lifted by knowledge of new prognostic testing capabilities will suffer when these can't be carried out at home. I pasted below an expert that really does not help me. But I hope makes you all realise what opportunities you still have and can find out enough to make some short term decisions at diagnosis.
"I can think of a bunch of “life” decisions patients may need to make, depending on their long term CLL prognosis. Do you change jobs, possibly risking health care coverage or the quality of the coverage? Do you take on additional debt and move to a more expensive house, based on the assumption that your healthy paycheck is going to be around for a long time to protect your family? Would you slow down, take the time to smell the roses and spend more quality time with your family, if you knew you were in the more aggressive unmutated IgVH risk bucket? Would you make different therapy choices, perhaps line up your ducks for an eventual stem cell transplant – sooner rather than later? Would you continue to indulge in behavior such as smoking and excessive sun exposure, if you knew high risk CLL also means higher risk of secondary cancers? I can think dozens more such questions. But here is the problem: would healthcare providers consider such one-of-a-kind personal issues, if the slam dunk expert opinion is that detailed prognostic testing is only to be done in the context of clinical trials?
CLL is a complicated disease. With the exception of a percentage of patients who luck out and have very indolent disease, majority of patients will find their CLL diagnosis comes with the guarantee that it will dominate big chunks of their lives. You will need room to maneuver, take care of personal and family issues that are not part of any standard healthcare providers’ do and don’t lists. The choice should be yours, the decisions should be made based on what you want and need."
Unfortunately many in the UK seem to be lumped into the same bucket at diagnosis, we are told you may be the lucky one but know also maybe not. So to be safe have to take everything on board prudently, including the worry that comes with the wait. But can get some of the shopping list, just not the genetics. If you are someone who feels they need to know, not knowing enough is an assault on your quality of life. I found out my Kareotype and mutational status due to physical concerns and in my case that is enough. But I remember being trapped in limbo before! if you need to get them you can find providers who will for a fee.
Did getting some answers help me? I don't know as inevitably so much time had passed, perhaps I had come to terms with diagnosis and physical changes had caused me to take stock of my plans anyway. There is the question if you were to find you were 17p deleted did you really need the news at diagnosis? Perhaps it made me realise it is real and I know now I am not in the indolent bucket, but then I think I knew that already. Intermediate is not so bad, but that doesn't change how I have been affected physically and this looks like it's for the long haul on "watch and wait", well, as long as possible. LOL Take care.
Nick
