I just read an article that I felt would interest a significant number of our members, so I'm providing a link to it here: dana-farber.org/newsroom/ne...
As a patient at Dana Farber I get their newsletter by email regularly, and every once in a while a subject matter of an article interests me enough to read it. Richter's Syndrome is a subject I read about early in my W&W with CLL which in February will be five years. It scared the living daylights out of me, so I try not to ever think about it. I've known it is a horrible version of our CLL that regular CLL can all of a sudden transition into. About one percent of all CLL patients turn into Richter's each year, and hopes for survival I gather are very poor. So when I saw this article in today's email from Dana Farber, I felt I should share it with all of you.
This is sort of a Spoiler before you read the article, but it relates to what I said in the last paragraph. I said CLL transitions into Richter's. This article has a new discovery with respect to that sort of misconception. At least with my limited knowledge in some of the scientific language, I think they are saying Richter's might evolve seperately from CLL. I'm sure some of you are more capable to interpret the article and comment on that better than I can in these current days. I say current days because I'm sure that fifty years ago I would have been able to understand what I read easily.
Carl
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wizzard166
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Thanks for posting this, it's very interesting to see the results of paired, longitudinal samples from patients which are so valuable to researchers. NOTE: if any of you in the UK have contributed samples of blood to theUK Biobank then you are contributing to this sort of precious resource for researchers.
I'm not sure this article tell us much additional information in so far as we know Richters has a highly complex genome, that some genetic changes are more likely to lead to Richter's and that some cases are not genetically linked to the patient's CLL but have arisen 'de novo'.
I thought the the most interesting aspect was the detection of the Richter's DNA in the blood of patients 1-10 months before a diagnosis was made. One of the most crucial aspects of the treatment of this terrible disease is early detection and this could make a real contribution here if the results can be validated by further studies and the DNA signature can be typed with some certainty.
We all worry about Richter's and if a test like this could come into routine use in the clinic it would reassure both patients and doctors alike.
Jackie
PS CLLerinOz also posted about this but in more medical and technical terms that others might like to review
Well, we have no idea how expensive the test might be, that will depend on the technology and how easy it is to interpret. I think we are talking about 10 years+ for a test. However, if you contrast the cost of a blood test, even a very expensive one, against a PET/CT scan plus surgery to remove a node, plus the costs of histology processing and reporting then it may still be cheaper.
Richters is often suspected when the patient has a single rapidly enlarging node or nodes and also presents as being pretty unwell in themselves. There are also biochemical markers, including a raised LDH and calcium levels although both are seen in other situations.
More and more, we hear about "liquid biopsies" that can detect various cancers from a blood sample. I expect that often, some company patents some aspect of the test, and makes it a product.
Since this is genetic, and genetic sequencing technology is cheap in mass quantitities, it could be fairly cheap at some point.
I expect that the problem is in going from research, where they specify each and every basepair to discover, and hand hew the DNA templates needed to run it through the machine, to ordering those templates ready-made from a catalog is what we're waiting for. The company that makes the templates rules the genetic world. I don't know enough about the world of DNA templates to set expectations.
It makes sense early detection would improve prognosis but with our woefully inadequate treatments that is far from certain. CLL Society is funding Dr. Christine Ryan's research on drivers in RT at DFCC. Hopefully something clinically meaningful comes from it. Soon.
Well said Dr Koffman. Early detection is a good thing, but if no treatment yet exists that works it basically doesn't matter. I think the idea though is that present treatments might work if they were started earlier. The idea of repressing the proteins that allow the extended lifespan of the Richter cells however does sound encouraging.
Thank you Dee. Richter's is the only thing that honestly has put some fear into me since I knew I had CLL five years ago. Any progress is good news, and I'm also glad I'm a patient at the Center that the research is currently being done at.
I went through a Richter's scare last summer due to aggressive CLL and bulky lymph nodes Doctor thought I had large cell lymphoma Problem I needed to start CLL treatment due to platelets tanking and doubt I would have survived RCHOP treatment before CLL caught up with me Excuse run-on sentences due to text editor problems All is well that ends well
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