As a 66 year old on three years w & w - my lymph nodes and general health make me think my time for treatment may be soon.

[SimplyauburnUK]

Those who have experienced treatment in the UK - my question is what tests do we expect to be carried out by the consultant before deciding what treatment is suitable?

[David39]

Prior to my treatment, not all immediately prior to treatment, but in the run-up, I had the following tests:

-liver and kidney function to ensure you're able to metabolise the drugs effectively (done via a blood test),

- a FISH panel to check for chromosomal abnormalities which make some kind of treatment less effective and therefore influence the type of treatment given (also via a blood test and sometimes has been done earlier during W&W)

- a CT scan to check for the size and presence of lymph nodes, particularly abdominal ones that can't be felt, and the size of your liver and spleen.

- bone marrow biopsy to check the level of marrow infiltration and to provide a benchmark against which treatment could be measured

- a routine blood test to check the usual counts, plus B2M, LDH and DAT levels

They're the ones I can remember. It doesn't mean, of course, that the same tests would be considered necessary in all cases, and there may be others that I didn't have.

[Cllcanada Top Poster CURE Hero]

The key marker for treatment is your absolute lymphocyte count (ALC) . If this number hasdoubled within 6 months then pretreatment assessments are started. By itself it does not commence treatment, but is a strong indicator the CLL is proliferating. In SLL it is the apperance of lymphocytes in the blood often.

Other factors are platelet counts, fatigue, weight loss, night sweats, and your general health.

The tests David outlined are the same used in Canada, with the exception of the FISH test which wasn't needed in my case, and the BMB... they aren't used to much here...

[SimplyauburnUK]

many thanks to you both - this site is invaluable for the information and comfort it gives in being able to find out things so readily.

[Safta]

I know this has been answered many a time but please remind me what a FISH test is

[MsLockYourPosts Passed Volunteer]

I also had Flow Cytometry done. If you are having a bone marrow biopsy the FISH and Flow can be done as a part of it which may have been the case for David.

[Cllcanada Top Poster CURE Hero]

FISH stands for fluorescence in situ hybridisation. It show errors in genes, often called markers...hopefully it will be augmented soon with whole genome sequencing.

cancerresearchuk.org/cancer...

FISH only finds what it is preprogrammed to find...it is missing some of the complexity of CLL now... new sublones like NOTCH1 and SF3B1, BAFF, cMyc and so on...

The old days of the 5 CLL markers, 13q, Tri12, 11q, unknown and 17p is rapidly drawing to a close.

Clinically, however, the only one that matters is 17p, which requires alternate treatment...all others are treated the same.

HTH

~chris

[jangreen]

Hi My consultant said that when to start treatment is an art form not a science. All the tests that people have post are the ones that I had. Treatment started for me after a "bad" blood test and night sweats. Good Luck.

[SimplyauburnUK in reply to jangreen]

Thank you - my bloods have remained pretty consistant with no real doubling over 6 months - my other question is how large do they let lymph nodes become - as I have one that has grown considerabley since my last 6 month visit - large marble size under the armpit- what can they do if the bloods remain stable and they do not wish to commence treatment of the CLL?

[jangreen in reply to SimplyauburnUK]

Hi They can treat areas with targeted radium( or radiation I'm not sure which one it is) or simply remove them with chemo. Best wishes

[SimplyauburnUK in reply to jangreen]

Thank you again