Does anyone have any information about T cell pro lymphocytic leukaemia?

[Babs58]

[ThreeWs]

This paper's abstract might be worth copying and showing to your doctor. You might try to find a T-Cell support group with more knowledge on your situation. I suggest ACOR as it has diverse coverage of medical conditions.

<bloodjournal.hematologylibr...

"Perseverance Furthers" I-Ching and good luck in your quest.

WWW

[HAIRBEAR_UK Founder Admin]

I see you are in the UK

Hi babs58 welcome

T- PLL used to be known as T- Cell CLL . " There are a lot of people who have been told that they have T-CLL. Many years ago this was a proper diagnosis. Indeed, it was taught that there were two types of CLL: B-CLL and T-CLL. This is no longer the case. What used to be called B-CLL is now just CLL (or CLL/SLL) and what was T-CLL is a number of different conditions." Prof Terry Hamblin/from his blog mutations of mortality . You are very welcome to join us here and share support with us

Just lost my post while editing let's try again

A good place to start leukaemiacare.org.uk/suppor...

Support groups leukaemiacare.org.uk/suppor...

Medical papers.from UK expert Dr Clare Dearden The royal Marsdon

July 2012 - How I treat prolymphocytic leukemia - bloodjournal.hematologylibr...

Dec 2012 - B- and T-cell prolymphocytic leukemia: antibody approaches - asheducationbook.hematology...

2013 - PDF - Guidelines for the Management of Mature T-cell and NK- cell Neoplasms- bcshguidelines.com/document...

2013 - Treatment of T cell prolymphocytic leukemia uptodate.com/contents/treat... behind a subscription wall

please let us know more about yourself

Nick

[Babs58 in reply to HAIRBEAR_UK]

Hi Nick

Yes I am in the UK, Scotland to be precise. I am a 55year old who retired early from teaching after 32 years. Havign susrvived breast cancer last year, my outlook on life and my priorities changed and I decided to remove the stress from my life. My blood results had been monitored dueto my dieabetes as well as during the cancer treatment and a GP noticed it continuing to rise and so refrred me to Haematology. They did tests including a bone marrow biopsy and scans and diagnosed me with T cell PLL. a bit of a scare but it made me even more sure I had done the right thing in retiring. I am aware that being diagnosed in indolent phase is even more rare than the illness itself and that most of the inf is about more aggressive stages and can be scary. However, I always believe in knowing what I am facing. A lack of detailed prognosis is harder to handle but being told that the last pateient my consultant had in indolent phase was stable for three years kind of made me realise the time scale could be shorter than I had thought and maybe I should find out a bit more. Party of me is a bit scared in case the news is harsh but the main part of me wants to know. thanks for the links which were helpful and gave me more info than previously had.

[HAIRBEAR_UK Founder Admin]

Babs thanks for sharing your story

I think many will be able to relate to what you are saying. I am a watch and wait patient and have been for three years. so now know what my disease is not doing so am one of the lucky ones.at the moment.

But I do remember diagnosis as if it was yesterday and coming to terms with having to watch and wait and find out what may be ahead takes a lot.of courage and is incredibly scary. There are a great bunch here that make up our community and we can share different experiences around the same theme. Read only what you wish to from the links when you are ready, We never know what and when, but you are not alone here.

Well done for posting ,, others will join you here.

Very best

Nick