You are not imagining things nor are you alone and you may not feel listened to.

[HAIRBEAR_UK]

If there ever was a must read paper to help explain what we may experience when living with CLL while on "watch and wait" then this is probably it. Published last year by the HERG study group at Oxford. It is a lengthy read but worth it. I know many of you have passed this onto your GPs to read. There are some interesting observations from patients and conclusions including recommendations made that are raising awareness.

Some of you may resonate with the patient stories?

:

Incurable, invisible and inconclusive: watchful waiting for chronic lymphocytic leukaemia and implications for doctor–patient communication. You can download the full PDF here:

herg.org.uk/publications/20...

Chaya Venkat at CLL Topics was prompted as it was released ahead of print last year to editorialise it in her colourful way.

updates.clltopics.org/4085-...

[teakbank12]

Thankyou for the link, makes good sense to take note of it all.

Dave

[sparkler]

It is worth printing all of this and giving it to your GP.

sparkler x

[HAIRBEAR_UK Founder Admin]

Free access to the article through the HERG website is no longer available? The Full paper was published in European Journal of Cancer Care Volume 21, Issue 1, pages 67–77, January 2012

Incurable, invisible and inconclusive: watchful waiting for chronic lymphocytic leukaemia and implications for doctor–patient communicati

onlinelibrary.wiley.com/doi...

I cannot locate my PDF copy - is it available open access any where.? Sparkler do you still have your copy?

[buckinhard in reply to HAIRBEAR_UK]

Hi Neil, I followed the online library link and ordered a copy for $3.50. It should come in my email soon. If I can, I'll email the copy to you so others can get a copy or read it.

[Cllcanada Top Poster CURE Hero in reply to buckinhard]

Please be cautious, redistribution is illegal due to copyright laws and the document might be tagged to you personally. The internet has eyes and ears everywhere

[buckinhard]

Oh, hhhmmm...ok. What does it mean.. tagged to me personally....?. I haven't gotten the email yet, will there be some kind of disclaimer not to give it to someone else? I signed up as a patient.

Denise

[Cllcanada Top Poster CURE Hero]

Depends on the rights you signed...you might read the fine print or the 'I Agree' statement... when you bought it. It usually is for personal use only, not to be shared with others...

I HATE the whole idea of patients having to pay for this vital information, but I also, feel publishers have a right to protect their publications...

Double edged sword...