hi relatively new in here. I cannot see a pinned post on this subject but apologies if i missed it.
i am on watch and wait and next check up isnt till December. I have read posts about deletions and mutations and how it influences long term prognosis re future treatment, aggressiveness and mutations, as well as the ‘right’ treatment. I worry about the long term future rather than the here and now.
Who does these tests and when in UK? Is there a reliable resource i can read/research as it is difficult to understand fully against specific query posts.
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Saju21
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The two main prognostic tests for Cll are FISH and IGHV mutation status. The FISH test looks for common chromosome mutations that cause Cll, typically 13q, trisomy 12, 11q and 17p. They are listed in order of low risk to high risk with 13q being low risk and the most common mutation.
IGHV testing is a bit more complicated. In simple terms, those with mutated IGHV have a better prognosis than those with unmutated IGHV Cll.
Someone from the UK can answer better than me, but my understanding is neither of these tests are routinely done at diagnosis in the UK outside of someone in a clinical trial. I think FISH testing is done right before treatment because 17p Cll does not respond to the frontline therapy in the UK which is a chemo treatment called fcr.
I don’t think mutation testing in the UK. I assume that is because it’s expensive and mostly prognostic, not therapeutic.
I have linked you to below some articles I did in an attempt to simplify FISH testing and IGHV testing. I hope that helps.
To be clear, I’m no expert on Cll testing in the UK. It may have evolved. I personally think the information from FISH and mutation testing is important in guiding treatment decisions and I hope one day it becomes part of routine testing at diagnosis for everyone with Cll, everywhere.
thank you I will read and digest. Isnt it strange (I say cynically), that medicine is meant to be ‘science based’ yet so many countries take diverging approaches..,
I think conventional treatment for Cll is extremely science based. I have had both ibrutinib and venetoclax, separately, and for me these drugs are miracles of modern science.
The diverging approaches you describe are mostly due to financial considerations. The new drugs are very expensive and less available in countries with public health agencies who can’t afford the treatments.
There are natural remedies some people swear by, but little or no scientific evidence to support natural treatments controlling Cll growth.
Saju, here's some info from Blood Cancer UK's website, including tests that are done after diagnosis bloodcancer.org.uk/understa...
You will have had your blood analysed in order to confirm the diagnosis of chronic B-lymphocytic leukaemia, and it will be monitored through your "watch and wait" years. Within the NHS framework, however, further investigations are left until just before treatment commences. Important among them are the FISH analysis and IGHV mutation status, which together tell your haematologist which treatments may or may not be appropriate for you. If your hospital is running an appropriate clinical trial, you should be offered the chance to enrol.
Thanks to all the responses. I have bere laid up with strained knee ligaments and used the time to watch the Canadian lymphoma symposium presentations which were very good - especially dr lin yang
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VenR in Relapsed CLL: 4-Year Results and Evaluation of Impact of Genomic Complexity and Gene Mutations from MURANO 3 study
MRD testing not offered
CLL/ Polymyalgia/GCA 
