Hi , recently I have been informed that my CLL... - CLL Support

CLL Support

23,253 members39,949 posts

Hi , recently I have been informed that my CLL is T cell related . TPLL does anyone have any information on this ?

333butterfly profile image
8 Replies

Hi , recently I have been informed that my CLL is T cell related . TPLL does anyone have any information on this ? Having seen 2 consultants one says it’s LGLL and the other TPLL . I’m confused. What markers differentiate the two? Any advice would be helpful, thank you .

Written by
333butterfly profile image
333butterfly
To view profiles and participate in discussions please or .
8 Replies
Jm954 profile image
Jm954Administrator

There are several types of lymphocytes CLL arises from B cells and TPLL and LGL arise from T cells. They are very different diseases to B-CLL and need different treatment which varies according to the type of T cell Leukaemia. Prognosis varies according to the type and you mention both TPLL and LGLL which are different with TPLL being much more aggressive. LGL, like CLL, can be very slow or more fast growing.Here is the LC information about LGL.

leukaemiacare.org.uk/suppor...

LLS information for LGL:

lls.org/leukemia/large-gran...

and for TPLL:

lls.org/leukemia/t-cell-pro...

LC have a group on HU that you might find helpful:

healthunlocked.com/leukaemi....

I hope this helps

Jackie

333butterfly profile image
333butterfly in reply toJm954

Thanks Jackie , these are really helpful 👍

Smith123456 profile image
Smith123456

based on my own experience-i have b-pll- sometimes these things are hard to give an exact diagnosis. as one doctor said to me about mine-yours is a mish-mash. Yours could have similiar issues.

333butterfly profile image
333butterfly in reply toSmith123456

Yes , the words mish mash sound familiar !!

lankisterguy profile image
lankisterguyVolunteer

Here is a link to the 49 previous posts that mention b-pll healthunlocked.com/cllsuppo...

Many of them are from members that say they have b-pll

-

And 6 postings for LGL: healthunlocked.com/cllsuppo...

-

It is frustrating that the T-cell lymphomas seem to lack distinct markers and take a long time for diagnoses to be pinned down. You may need to get referred to a Leukaemia expert at one of the major hospitals in the UK, and then it may still a blurry differential diagnosis.

-

If you can read dense med-speak here are some papers that talk about the complexity of distinguishing the two lymphomas:

pubmed.ncbi.nlm.nih.gov/159...

onlinelibrary.wiley.com/doi...

-

Len

333butterfly profile image
333butterfly in reply tolankisterguy

Thank you Len , really appreciate your response 👍

DriedSeaweed profile image
DriedSeaweed

It seems to me it would be rather important to pin down what it is before treatment. Can you find specialists in those areas to help you rule out one?

bkoffman profile image
bkoffmanCLL CURE Hero

Rarer cancer that at one time was classified as a type of CLL, but they now have known for a long time it is a different leukemia. Try to find an expert.

Not what you're looking for?

You may also like...

Hi.....does anybody have any objections to a health professional "without" CLL occasionally contributing to this forum?

I don't have CLL myself, but am an experienced haematology nurse & currently coordinate a CLL phone...
daisyruby1 profile image

CT scan Boney lesions, I have just had a CT scan and boney lesions have been detected on my pelvis and lower spine, is this CLL related.

diagnosed 9 years ago, my platelets have started to drop from 240 to 144 in the last 6 months or...
MrsB1963 profile image

I have noticed lately that I am getting an ache in my left shoulder, could this be CLL related?

It has only come on over the last couple of weeks but it is an annoying dull ache at the shoulder...
pitbull profile image

TPLL - Experience with venetoclax/similar treatment

Hello. I hope it is okay to post here as it is very difficult to find dedicated TPLL forums for...
jaye0 profile image