Hi Seniors,
None of my doctors advised mentioned tests to me. While on internet I study that these are very important to determine prognosis.
Should I do on my own? What I have done are FISH / Immunoglobulin level I,G,M / trephine biopsy / LFT/ ultrasound / Coombs test / flowcytometry etc.
Thank you in advance.
MD Anderson developed Beta 2 Microimmunoglobulin (B2M) as a prognostic indicator for life expectancy. It indicates your tumour burden. There's reportedly a good correlation and it gives your doctor additional information about your likely prognosis and about the health of your kidneys. It changes over time. Chaya Venkat suggested in a CLL workshop that it be done every 3 months. My haematologist requested this test for me annually in the first 3 years of my diagnosis and it didn't change much. A reading of less than 2.1 equates to a median survival of over 12 years.
sTK I don't recognise
Cytogentics you probably shouldn't worry about getting done until just before you need treatment as the results can change over time. They can be useful for determining what treatment will and won't work for you, so it could save you from going through chemo treatment and finding that it doesn't work that well for you.
IgVH should not change over time and will fairly reliably tell you whether you are likely to need treatment soon (unmutated) or much later or never (mutated). It is hard to do reliably, so I expect you'll need to send a blood sample overseas for it to be done. I've never had it done, as in Australia I gather it can only be done by hospitals set up to do CLL clinical trials.
Think carefully about whether you really want to have these last two tests done now. You may find the burden of knowing that you will probably soon need treatment distressing and that may not in the end be the case. Every month or so new papers come out with yet further tests that try to predict what will happen. Experts still don't know the complete picture, which is very complicated, with the different prognostic factors interfering with each other.
You'll find out accurately over time in any case...
Neil
Thanks Neil, as usual you provided excellent information. So I think no need to go for these tests
Maximum i know about sTK is that it is abbreviation of Thymidine Kinase level.
Your CD38 percentage on your flow cytometry is a marker for IGHV mutation status...
Under 30% you are mutated, over 30% unmutated...
Clinically this is an accepted marker with about a 70% accuracy...
sTK were looked at 5 years ago, but not used much clinically...
~chris
You've asked Chris why the TK test in not used now. I don't know the answer, but new prognostic tests are regularly proposed for CLL, which means old tests will go by the wayside unless they prove valuable.
Bottom line is that you can have every prognostic test available in the world and all that will likely happen is that you will be more confused. Depending which ones you pick, you might live for a few years or never need treatment. The story is still incomplete (and it changes as your CLL progresses), so realistically the only way to know is to live the experience.
Put your efforts into improving your health so that your body can best help itself and find a good specialist that you trust to help you monitor your CLL for any progression. Pretty well all medicine is largely giving your body a helping hand so that it can do what it does best - repair itself.
Neil
Neil, thanks for these replies on this post. I have seen it many times over. Bad markers, stage 4, being told months or even weeks. Then something happens or should I say never happens. Live Life. Have FAITH and BELIEVE. STAY STRONG J.R.
Hi Neil
Please guide that I already did FISH tests. Do i need to go for blood cytogenetics test? As per my understanding FISH also diagnose chromosomes abnormality.
Regards
Cllcanada can answer this better than me - he helped me understand my results What we call FISH testing is just a set number of recognised important cytogenetics tests. There's a range of cytogenetics tests available with more being developed over time. There are several different FISH panels that a haematologist can order that test for increasing numbers of chromosome abnormalities.
FISH (fluorescent In Situ Hybridsation) is just the technique used to identify the abnormalities. Basically specially made DNA segments with a fluorescent end are made that key (are attracted) to a particular type of chromosome damage. You mix these with the DNA from lymphocyte cells and the brightness of the fluorescence gives you a direct measure of how much of the collected DNA has the defect you are looking for.
youtube.com/watch?v=nm8Ai1C...
If you delay any further testing until just before you need treatment (If indeed you ever do), then:
1) Your results will be most accurate, because some test results change over time. Your CLL clone can gradually accumulate copy errors as the DNA is duplicated when the CLL cells divide.
2) Better/different tests are sure to become available in the future as our understanding of the importance of different genome defects and how they interact with each other becomes better known.
Neil
Hi Neil
Done B2M and result is 1.5.
Regards
That's great news AAli! Given the median survival for B2M under 2.1 is greater than 12 years, i.e. half of all CLL patients with a B2M under 2.1 live longer than 12 years, hopefully you can now relax and not worry about what treatment is best. Who knows what will be available if/when you eventually need treatment?
Neil
Thanks Neil, much happy n relaxed. Can you plz give reference of any article in which median survival is given. I just need for my information, otherwise fully respect your opinion.
regards
AAli, well done asking for references! I appreciate your complement, but you should always check what I've provided against reputable sources and ensure that there's no later information. I haven't seen B2M discussed in any greater detail or heard anything to the contrary to these references below. That's not to say that there won't be updates, but William Wierda is certainly a well recognised CLL expert!
Read through:
updates.clltopics.org/3256-...
You should find B2M discussed in the slide pack in William G. Wierda, MD, PhD, University of Texas MD Anderson Cancer Center notes.
and
updates.clltopics.org/3695-...
Neil
IGVH Unmutated and Stereotypes
Beta 2 Microglobulin Testing
Any significance with IgVH testing?
IGVH V3-21 and IGHJ Family J4
Treatment FCR with unmutated IGVH—clarify pls! 
