Prognostic markers / subsets

[Guest guest]

Hi

I have been reading list for a long time now and find it

helpful and supportive. I am a 66 year old woman.

I am trying to find out if anyone else who has been dx

w/13q14, (I know 13q is most common and a good prog.) but

w/unmutated, w/ high cd38 pos., these are more disease

progressive.

My Onc specialist said about 30% have these subsets with 13q

(if that is how you describe it) my B2 was only 1.9, zap-70

neg. When I research this I find little if any info..

I was dx in 2009. on w/w for a yr. I have a local onc/hem.

and I went to a specialist when treatment was decided by the

nodes that where through out my body as well as cervical,

neck, occipital and auxiliary. wbc was at highest of 32000.

I had CT and BMB before Tx. My Tx regimen was R/B for 6

cycles. and I am now 3 months into remission. I was in the

hospital for a week when my temp went to 102. Dx with CMV.

This was not comfortable. now only have problem with skin

itchiness that a dermatologist said it could possible a side

effect of tx and onc. thought it was follicular rash.

So if anyone relates to this or where I could find out more

about these markers, I would appreciate your comments.

Thanks

Jane

Florida

[Guest guest]

Hi Jane,

I am a 13q14 del. patient and was told that I may never need

Treatment because of, not only the 13q by FISH but because I

was also found to be IgVH mutated by a " healthy " 6%margin,

CD38 neg. but I was found to be ZAP-70 + (58% high) which

was generally held in doubt by Oncs to include CLL

specialists because ZAP-70 is not yet a reliable test. My

CLL never read that interpretation of my markers and I had

to be treated two years after diagnosis. There are folks who

have the 17p (poor prognosis) marker who have been diagnosed

years before me and are still TX free.

There is a lot more to CLL that is unknown regarding the

importance of these markers. One can be a 13q del with a

monoallelic or biallelic deletion, it is currently thought

that the % of cancer clone having a particular deletion may

play an important role in progression/aggression. The gene

family associated with the mutation status may have a

bearing on the course of your CLL and in conclusion but

hardly " finally " , the degree of DNA damage in and outside

the " Minimally Deleted Region " that includes the RB1 gene

(for you as a 13q patient) which can be damaged or deleted,

all will have effects determining the course of your disease

but will not be predictable.

Your situation will unfold uniquely to you as to all of us,

but is at this point, better by some of your tests in that

you have a greater range of drug treatment protocols than if

you were a 17p or 11q del. patient and a statistically

better margin of expectation for a longer period of Wait &

Watch. Your FISH marker (13q del in your case) is good to

know when and if treatment is required and may change over

time so depending on how soon you will require treatment the

retesting for FISH markers could be important but the retest

for IgVH mutation status will always be what you have

reported provided you have been tested at a reliable lab and

are not on the border of Mutated/Unmutated percentage (1%to

2%) Some commercial labs are not as careful or rigorous in

the quality of their tests.

There is a greater chance of acquiring a different or

additional clone marker revealed by FISH when a patient is

unmutated. This is not something to be in a panic about now

but does heighten the importance of getting FISH repeated

before being treated.

May your path be well chosen,

WWW