CORRECT CLL DIAGNOSIS

[vinnet]

I came across below article which says that most of CLL dx are incorrect? I am sure, I am missing something, BUT I want help from experts/experienced in this forum to advise how I can get my CLL dx confirmed? In India?

m.asheducationbook.hematolo...

[AussieNeil Partner Administrator]

As the paper you cited states - ¨Immunophenotyping of peripheral blood lymphocytes allows CLL to be distinguished from other low-grade lymphomas in most cases" and as reference 8 notes, this is done by having a Flow Cytometry blood test. Your doctor should be able to find a blood testing laboratory that provides this standard (but infrequently used) blood test or at least direct you to a haematology specialist that can do so.

Have you had this test to confirm your diagnosis? If you do have a CLL diagnosis, welcome to our supportive community. We do have a few members from India and appreciate that with CLL being less common there than in western countries, finding adequate medical support can be challenging.

Neil

[vinnet in reply to AussieNeil]

Neil

I am a part of this forum for over 6 months and feel very supported!!

My onco had flowcytometry done and cd5 and cd23 were the main basis for him to pronounce me CLL stage0, around 9 months ago.

Since we dont have CLL specialists in India, I feel that i may not be getting best advise. The article I sent you, also tries to predict " treatment free survival time(TFS) " on basis of tests. My onco never talks of TFS. I am supposed to go every three months with cbc report. As per article, my TFS could be 180months. This TFS will eliminate all my subconscious stress!!

Next month will be my first CLL anniversary. Although my WBC had been high since 2013, but doctors doing my annual health chkup, gave no attention to high WBC counts. ( now around 21)

I would very much appreciate if this forum can help in getting me a second opinion from CLL specialist and an idea of TFS.( if we give credence to tools mentioned in the article)

Vinnet

[AussieNeil Partner Administrator in reply to vinnet]

Hi Vinnet,

Given you have been diagnosed by the interpretation of your Flow Cytometry report, it is unlikely you have been misdiagnosed. We've had very, very few members report a wrong diagnosis, but it can rarely happen, particularly if a person may have more than one blood cancer. If you have your flow cytometry results, you can personally confirm your diagnosis by checking the table 'Common phenotypes of B cell cancers' in this reference: updates.clltopics.org/423-t...

The paper you cite is 8 years old and new papers regularly propose new prognostic indicators to try and predict time to treatment and overall survival. The problem is that due to the huge complexity behind why healthy B-lymphocytes become CLL cells, these prognostic factors are only useful in predicting the median time for groups of patients with the identified prognostic indicators - they just can't provide an estimate for an individual. (I suspect that's largely why you haven't been able to get an estimate from your oncologist.) Brian Koffman covers some of this here: cllsociety.org/2016/03/prog... where he references the CLL Topics site I referenced above: clltopics.org/PI/Type.htm The section of particular interest to you starts at Chromosomal abnormalities, FISH (Fluorescence In-Situ Hybridization). Given the difficulty finding a CLL specialist in India, you might like to explore getting FISH and other testing done via your current specialist and working out which 'bucket' you fall into. Many of us prefer not to know and if you eventually get to the stage of needing treatment, FISH testing will need to be done again, because this and some of the other prognostic tests can change over time.

Neil

[vinnet in reply to AussieNeil]

Thanks. I came across the article by chance , and I asked the questions that came to my mind!!

I can now see more recent ones cllsociety.org/cll-101/

I wud rather avoid more tests etc. to determine my bucket.

vinnet

[bhayes84 in reply to AussieNeil]

Thanks Neil.

The first link

updates.clltopics.org/423-t...

was extremely informative about the CD cell surface markers and the gene mutations from the FISH test.

Bill

[lankisterguy Volunteer]

Hi vinnet,

I am repeating my response to your comments yesterday, and hope you will edit your posting and remove the link to that 2009 ASH booklet. Please use more current information and survival charts. Using the CLL society cll-101 course is a great start.

cllsociety.org/cll-101/

+++++++++++++++++++++++++++++++++++++++++++++

Repost: "Unfortunately, despite using ASH - a reliable source- your link points to a very old (2009), outdated publication with survival curves that are far more pessimistic than current data. Also the non Chemo therapies approved for use from 2013-2017 are not mentioned at all.

I would suggest that when you use Google- you always use "tools" to restrict your results to 1 year. Then you will have more current information, as significant strides in treatment and knowledge have been made in the last 5 years, and the clinical data is just now being published.

If you don't mind - please edit your post to point to a more up to date source like:

cancer.net/cancer-types/leu...

healthline.com/health/chron...

uptodate.com/contents/chron...

+++++++++++++++++++++++++++++++++++++++++++

Len

[vinnet in reply to lankisterguy]

Len

I already wrote clarifying my position and mentioning the current link...

vinnet