Recently diagnosed? Here are several easy read patient friendly resources to help you begin your journey with the disease.

[HAIRBEAR_UK]

These are several UK information resources that those diagnosed with CLL may find helpful as an introduction. I have re-posted the info to pin it in view in the margin as our first pinned post.. This enables links to information helpful to aid early understanding and the community discussion to remain in view and be easily located. please introduce yourself and feel free to add current reliable information that you have found helpful.

welcome to all the new people to the community that the new members directory has identified.

Further information, popular and current discussions will be flagged and kept available in the same way and added to pinned posts over the next few days.

Nick

cllsupport.org.uk

Leukaemia & Lymphoma Research: website ( A great place to start your learning, very recently updated information in booklets, Audio and videos and an extensive website written in an understandable manner.) leukaemialymphomaresearch.o...

INFORMATION BOOKLET PDF DOWNLOADS

Chronic Lymphocytic Leukaemia (CLL)

leukaemialymphomaresearch.o...

Information for those newly diagnosed with a blood cancer

leukaemialymphomaresearch.o...

Watch and Wait: Monitoring While Treatment Is Not Necessary

leukaemialymphomaresearch.o...

Supportive Care

leukaemialymphomaresearch.o...

This is brief and current introduction to and overview of CLL written by Professor Pettitt for the UK Lymphoma Association also a good place to start.

goo.gl/fQ0uI

Healthtalkonline, uses video snippets from CLL patients and medics to support information

Reactions to the diagnosis healthtalkonline.org/Cancer...

Other people’s reactions to the diagnosis healthtalkonline.org/Cancer...

Watch and wait healthtalkonline.org/Cancer...

Living with the symptoms of CLL healthtalkonline.org/Cancer...

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[Oleboyredw-uk]

Great list, and not just for newly diagnosed. One more thing ...... CLLSA meetings. I am really pleased i went to Cardiff and looking forward to Liverpool next Tuesday.

Rob

[littleriver in reply to Oleboyredw-uk]

Me too, but how will I recognise Oleboyredw? Or you recognise Littleriver?

[Oleboyredw-uk in reply to littleriver]

Funny you should say that littleriver. I was thinking wouldnt it be nice if the name badges have the option on to write our userids, maybe something for the future? I'd be happy with that.

In the meantime.... Oleboyredw is about 5'9" used to have brown, nw greying hair and has a beard. I possibly look like a hangover from the '70s. Whilst i've had no desire to share my photo here as the world can see it, i've no objection to sharing my id at the meeting with fellow members.

Rob

[littleriver in reply to Oleboyredw-uk]

I will wear a pink carnation or something, will let you know beforehand.

[HAIRBEAR_UK Founder Admin in reply to Oleboyredw-uk]

Thanks Rob, for including CLLSA meetings. Meeting others in person and learning their experiences and how they live with CLL has been a good for me. I hope group members who wish to, get the chance to connect.. maybe red roses or snowdrops on the lapel ( :

Rob you are correct the information in the list is helpful to all, I have just revisited many of the patient stories.of people at different stages of their disease..

[Quarry]

Great list Hairbear and the info from CLLSA (and the links) has been really good in trying to understand what I have.

One point I have really struggled with is the white cell and lymphosyte counts. On the bloods bit of the CLLSA site (which feels authorative and a good prop for the learner), it mentions you are in trouble of lymphosytes are 50%+ of white cells. Mine are way, way over this (from memory almost 75%), but my consultant is not worried. I do trust her and that she is saying trends are much more important and that you need to look at indicators more as a whole. This was re-enforced by a link yesterday to a video of an American doc (can't find link!) answering a question 'when to treat' and she was saying the same: it is all about the individual, single indicator not useful etc

Should this be amended on the site (which gives more a black and white impression that >50% bad - it obviously is not).

Keep up the good work!

Andy

[HAIRBEAR_UK Founder Admin in reply to Quarry]

Hi Andy

Glad the starter list posted is helpful.Looking into your question, I am not sure exactly where you are referencing a need for an amendment on the "Understanding Your Blood Results" section of the CLLSA site? is it on this page that you find a comment confusing?

cllsupport.org.uk/uybresult...

[Quarry in reply to HAIRBEAR_UK]

Yes - that page

Percent Lymphs....28 - 55% and words give impression this measure (percent value) is important. And mine is a lot higher (in percent), despite being v new to CLL.

It provoked a good discussion with Consultant (I am lucky to have Anna Schuh just round the corner: she is on your list) because I was starting in completely the wrong place: it has taken a while to sink in.

Personally, I wonder if that is too much here, especially for a new-comer (I have only used a few to understand what is going on to me). I do understand it is meant to be comprehensive, but I suspect Consultants are tracking a few key ones and looking at trends, not absolutes.

Thanks

Andy

[HAIRBEAR_UK Founder Admin in reply to Quarry]

Thanks for your observation, This is really only a reference section to give information and help understand different blood cell types and counts.

It was too much for me at the start i am not disciplined enough to plot my own so enjoy viewing the different graphs of trends when i visit my consultant or GP..

I think the important message that may be missing is that doctors don't treat numbers, they treat patients.

I too struggled with understanding my own counts at first. If you wish to monitor your own, start by focusing on just a few, use absolute lymphocyte count and view how this trends over time. This will give you your lymphocyte doubling time which is still one of the most reliable indicators. mine jumps around all the time so the average of this over six months /a year gives a better picture, Remember though that roughly only about 5-10% of the total number of white blood cells are seen in the peripheral blood. So the bigger picture must include what is happening in the whole of you..

It must be reassuring knowing you have Dr Anna Schuh to explain this to you she has recently just reviewed some of the website information and updated the treatment section.

Regarding your earlier question:

28-55% is in the normal reference range column for percent lymphs..If you have CLL you are not normal so yours you would expect to be different. This will alter as your lymphocytes increase in number relative to your other blood cell lines.

You concluded you are in trouble if lymphocytes are 50%+ of white cells?

CLL patients can live quite well with very high numbers of lymphocytes and percent lymphs and not require intervention, Conversely intervention may be indicated due to physical concerns while counts are relatively low. (i guess this could be clarified)..

The description explains "The percentage of the WBC that is lymphocytes therefore also increases as CLL progresses. CLL patients with advanced disease can have WBC and absolute lymphocyte counts as high as 500K or even higher, and their percent lymphocytes can be almost 100%,"

I hope this is of help.

Nick

[Quarry in reply to HAIRBEAR_UK]

Nick

I am sad enough to have developed a tracking system - I just don't have enough data yet. Thinking over lunch, things have become clear! Whilst my WBC bounces around 11.5 to 12, the lymposytes are 7.5 to 8+, so around 70% (bearing in mind I had no idea I was ill 3 months ago, so perhaps expected lymposytes levels to be closer to normal percentages). So the concept of doubling I was struggling with (how do you get 140%!).....

The clarity is that thinking about percentages has taken me down wrong road - of course the WBC number can also rise (indeed has to if there is to be a doubling)! I missed that simple point from the bloods page I think because of the way it presents percentages.

So as Anna was saying, the absolute number (and its change over time) is the important one. She told me really clearly, but I remained confused on percentage road. Perhaps this could be brought out more and emphasis on percentages downgraded (indeed in my spreadsheet, I have absolutes (from blood results) and calculate % (which are not in results)).

And as you say (and the Leclaire video explains v well), doctors do treat patients not numbers. I would probably add the numbers they do use are absolute and trends, but nothing is black/white as it totally patient-focussed: numbers are only start of a conversation.

It might be inadvertent, but you have stimulated clarity! So thank you!

Andy

[DebbieCoats]

The Cancer Research UK website also has extensive information about CLL, treatments, and living with CLL. It is in their patient information section at:

cancerresearchuk.org/cancer...

[HAIRBEAR_UK Founder Admin in reply to DebbieCoats]

Thanks for adding the link to Cancer Research,

The above list is just a short starter list of current reliable UK information. There are many others and of course a great many international resources too . HU are adding categories to help structure information content and allow easy information retrieval, posting and archiving. The CLLSA website list of further sources of information requires updating also.

I will post shortly a blog that provides an extended list of current reliable information that I hope will be of interest and use to help us discuss and formulate a current list of on-line CLL information and support resources...

[Quarry]

Found link re 'when to treat on white blood cell count'

patientpower.info/video/pla...

And it was Dr Susan LeClaire

Andy

[HAIRBEAR_UK Founder Admin in reply to Quarry]

Thanks for posting this recent broadcast, very useful facility, looking forward to her further broadcasts.

[HAIRBEAR_UK Founder Admin]

While checking links I noticed the site did not accept the original Lymphoma Association CLL PDF URL (it was too long) Have now substituted this with a shortened URL and it now active and the booklet can be downloaded using it. goo.gl/fQ0uI

For this I used Google URL Shortner (worth remembering), sorry if you failed to access it the first time.

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