Hang on Sloopy.

[RK66]

I'm a Zap 70 20% + CLL patient which is not the best of news but for those of us in that position, here is a very encouraging article which should give us all good reason to hang on.

curetoday.com/publications/...

[Cllcanada Top Poster CURE Hero]

Hi RK66

Zap70 results should be looked at with a bit of caution... it isn't the most reliable marker for IGHV gene mutation...

What is you CD38 percent on you flow cytometery? .... if both are positive then chances are with about 70% accuracy that you are IGHV unmutated...

If the ZAP70 was run at a major CLL research facility, then the accuracy is probably OK, but the cutoff is 20% , so it might be suspect, if done at a local lab...

Scroll down, I just posted today about Chinese researchers trying improve Zap70 as a marker...

The article you reference is a good overview of some treatment options available in the U.S., outside the U.S. might be different...

~chris

[RK66 in reply to Cllcanada]

Hi Chris:

I have definitely been diagnosed unmutated.

My CD38 % is 60%. My Zap expression is greater than 30% and I am a Trisomy 12. I am considered an intermediate risk. I was diagnosed two years ago this month. I have never been in treatment. I see my hematologist/ oncologist (CLL specialist) every 6 months for blood tests and lymph node examination. I remain asymptomatic and am feeling good.

I don't really care about median prognosticators which give me a survival rate of 6-9 years. I am currently 67 years old and I plan to go skydiving in my 80s (with my wife's ok) and die of old age.

Oh and yes the Zap 70 was run at a major CLL research center not locally. Took nearly a month to get the results back.

Best,

RK66 (now 67)

[CCLandwell]

Amen and thanks for the positive post, I love to read them.

[Jenferdog]

This is a really good article for me - it explains the CLL and FCR (which my husband is receiving at the moment) in easy to understand terms. Thanks for posting and good wishes.

Sue

[virdieblue]

I go next week for a blood draw for a new FISH test. On the first (2012) my CD 38 was moderate, so I am anxious about the new results. I have also wondered if the standard prognostic indicators are losing their validity due to the new treatments.

[Cllcanada Top Poster CURE Hero in reply to virdieblue]

IGHV gene mutated/unmutated may not matter with new treatments, but it is too early to tell, and first line use is paramount... not quite there yet.

The mix of prognostics is changing and the weight previously given is also changing, both due to new treatments that are effective first-line for high risk patients, but as we learn about new genes driving various negative aspects of CLL and BCR subtypes of the IGHV gene, the picture grows a bit darker, with genes like NOTCH1, c-MYC, SF3B1, BIRC3, TP53, RB1 and a dozen more, that aren't currently tested for routinely...

So simply... the prognostic picture is not complete...

CLL is still out in the lead, skillfully manipulating and ever changing, but good progress is being made to understand what makes it tick... however with over a million epigenetic changes in CLL it will be some time before everything is revealed...

The next big leap will be whole genome testing... probably still 5 years off clinically... it is still too expensive...

~chris

[RK66 in reply to virdieblue]

Hi VA:

I do think progress is moving rapidly and I would caution not to get hung up on standard prognosticators.

Dare to dance at 90!

Best,

RK66 (now 67)