Why 2nd flow cytometry?: WAW 5 years. I changed... - CLL Support

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Why 2nd flow cytometry?

Claybuster profile image
6 Replies

WAW 5 years. I changed Cll Specialists and he wants to do another flow cytometry next visit. I had two flow cytometries done, one a DX and one a year later as part of a second opinion. I am curious why he might want another flow cytometry. ACL 72, hgb 13.8, plts 117.

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Claybuster profile image
Claybuster
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6 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi Claybuster,

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I see you were diagnosed over 5 years ago and never have been treated- correct?

( If your would kindly include a synopsis of your CLL history, diagnostics and complications in your profile, it will help us answer you more accurately. Here is an example of a good profile IMO: healthunlocked.com/user/Jus... or mine: healthunlocked.com/user/lan...

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Why your new CLL expert would request a 3rd FLOW Cytometry is a puzzle, and hopefully you will get one by asking for an explanation.

For most untreated patients, the FLOW test results should not change, assuming the diagnosis had clear markers that matched the CLL pattern (see the attached graphic).

Some FLOW tests are not clear and patients - a few that I know personally- were initially diagnosed as CLL but later were found to have FL or MZL.

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Len

Immunophenotyping for NHL differential diagnosis
Big_Dee profile image
Big_Dee

Hello Claybuster

I suspect it is kind of like my cable TV guy, nobody else's wiring is good enough. :)

SeymourB profile image
SeymourB

Claybuster -

Did you have a change in symptoms?

I think asking the specialist directly why would be good.

Sometimes it's that they trust their lab more, and are painfully ignorant of costs and copays.

=seymour=

Ellieoak profile image
Ellieoak

Dear Clay, What does your blood type look like. Are you 11Q, 13Q, 17P, 53P . Are you mutated or unmutated? All these things play a role in how you are treated.

Claybuster profile image
Claybuster in reply to Ellieoak

Hi Ellie. My initial FISH said 13q deleted, mutated. Second FISH with CLL Specialist said normal karyotype with 2/18 translocation and 14q interstitual deletion. Mutated at 6.4% ( same as first FISH). No 13q on second FISH.

Ellieoak profile image
Ellieoak

I am not sure what 14Q has to do with CLL. I would definitely get another Flow test.

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