A Fabulous Blog from a Doctor who has CLL

[andrewschorr]

You will want to read this very informative blog about FISH testing for CLL from a doctor who HAS CLL. patientpower.info/blog/pati...

[Kwenda]

EXCELLENT ARTICLE...

A well thought out, and well written, article on FISH testing.

Sadly in the UK often a FISH test is not done ' as they cost too much money '.. This being a comment that I heard at a local hospital.

I was also told firmly once that a FISH test once done will NEVER change.

It is the same old story..You need to educate yourself and then find a specialist doctor who is up to date with the latest research into CLL.

As Andrew keep repeating ' Knowledge is the best medicine of all '.

Dick

FISH tested soon after diagnosis because I INSISTED on being tested..

[Cllcanada Top Poster CURE Hero in reply to Kwenda]

Took me 17 years to get a FISH panel run... mind you the test wasn't developed for part of that period...

However it came back 'Normal', so that was good... the gallons of chemoimmunotherapy I have had hasn't tweaked a known bad marker...

so overall it was a positive result.

Good blog.. the situation is different outside the U.S.... just saying...

~chris

[Mijoed in reply to Kwenda]

I was told that the FISH test would probably not be repeated, no matter how long the w&w period, but would certainly be done prior to needing treatment.

[AussieNeil Partner Administrator]

Thanks Andrew and Mcints who alerted me to this blog yesterday. Very interesting to hear how a doctor worked through the conundrum of to FISH or not (though in his case well meaning colleagues seemed to take the decision out of his hands...). I'm sure the planned future blogs from Randall will be equally interesting.

Neil

[Peggy4]

Really interesting and written in language that we ordinary folk can understand.

[Mike113]

Hi guys,

My wife had a FISH undertaken at diagnosis. It was all part of one very emotional whirlwind day so we didn't at the time understand what was going on. This resulted in a 'good prognosis ' phone call from the haemotologist. I haven't asked for any further specifics apart from we know of 10% 13 q deletion and a very low CD 38 count. I hope this means we are in for a very long W&W but I know all things are not equal with CLL. So I'm glad we know as it gives me some ground to reassure my Wife when times get a bit tough. Love and best wishes to all on this site and know you are in my thoughts daily.

[Ducksoup]

Anyone else had problems with the link? I keep getting Database Error.

[Cllcanada Top Poster CURE Hero in reply to Ducksoup]

Looks like then server is down...try later

[andrewschorr]

Thanks for pointing this out, we are checking on the technology problem right now!