I have been diagnosed and joined the CLL club recently. I have been doing my research here and also with Dr. Google etc. I just got my FLOW and FISH test results and it is very complicated. I am hoping someone here can give me the layman terms and what the results mean. I have a follow up appointment in a few weeks as well as a appointment at the Dana Farber Center in June. Flow test shows CD38(-) , ZAP-70(-) , CD19(+) , CD20 dim(+), CD5(+) , CD10(-) , CD23(+), FMC7(-), CD200 FISH Loss of ATM , del(13q) ATM(51%) and 13 (42%). Comment says ATM is associated with unfavorable risk in cll. Clinicopathologic correlation is recommended. Anyone that can give me their thoughts on this would be great as 2 weeks is a long time to search the web and get more confused and worried. Thank you all in advance.
Greg
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I think it says ur 13q which is a better deletion than others. Didn't see if ur mutated (which is good) or unmutated. Any results mention mutation status?
Dana Farber has a great reputation.
But June is a long way off. Do u see a local hematologist? 💕
Mutation status is a separate test and not done as part of the FISH. Looks as tho you are 13q with a loss of ATM. You are also Zap 70 negative which is a good marker along with 13q. You should ask your hematologist to explain your markers throughly to you and ask if you can have the mutation status test. If your test were to come out mutated, that would be a good marker to have. It is confusing, you should have your doc explain it all. I am sure there will be others on this site that will chime in as well to help you understand all your markers. CLL is a slower moving blood cancer so you have time to digest everything and speak to your doc. Although waiting till June seems like a long way off, in CLL time it's not. And if all your other blood results are in the normal to somewhat normal range, you most likely will be put on watch and wait. Best to you!!
13q is a favorable prognostic with Cll when it presents as a sole anomaly. When it presents with another anomaly like 11q/ATM deletion, 13q becomes less relevant as a positive predictor.
Fortunately, the new drugs like ibrutinib treat just about all markers and do well with 11q too.
We have 2 strands in our DNA in each cell, one strand from each parent. So mutations and/or deletions in only one strand may mean a cell still has the ability to function somewhat normally. Or not. When FISH tests are run, they look at a number of cells. So we see percentages in these tests, based on the number of cells showing an abnormality.
Since CLL is a common leukemia showing up in adults, your FISH looked at chromosomes common to CLL....the FISH test run was Chronic Lymphocytic Leukemia Profile. The two major abnormalities were listed under the "abnormal result" section at the top. Of the major deletions seen in CLL, you show these 2, Loss of ATM on chromosome 11 and del 13q. You do not show other markers mentioned here like TP53 deletion, del 17p, or the Trisomy 12 mutation. Other markers like chromosome 6 are tested to further see if you might have a disease similar to, but perhaps not exactly, standard CLL (B-PLL, SLL, etc.)
42% of your cells tested had a 13q deletion on one chromosome arm (not both). This same chromosome arm (allele) also had a deletion of ATM in 51% of the same cells, which is an important area of chromosome 11. Of your 2 DNA strands, one of your strands has 2 defects. I'm not a CLL specialist, but it seems to me that having deletions on only 1 allele instead of both is better. There has been discussion among experts about having only 1 allele, versus both of them, affected.
The cllsociety.org website explains a lot of these things in simpler language than searching for things using Dr. Google. Spending your time there & here in our Pinned Posts will likely give you a better understanding than random Google searches. Dr. Kaufmann has spent a lot of time at cllsociety.org website, and our moderators and others here, have spent a lot of time explaining and simplifying.
As you read through these sites, other sites are also recommended by our members. Much better than Dr. Google IMO!
The major take away from your test results is that with the ATM mutations, you are likely to respond poorly to the older chemo based treatments (commonly FCR, BR) and should you ever need treatment, go with targeted therapies. Thankfully, you live in the USA, so you can readily access the non-chemo targeted treatments, but even with your specialist doing this testing, sadly it's not a given. cllsociety.org/cll-101/test...
I was diagnosed 3 years ago so know what you are going through. I, like you and so many others, rushed to Dr Google. It is totally understandable but also very confusing. My recommendation would be to only use trusted websites Leukaemia Care, Leukaemia Society, Bloodwise etc to make sure you get accurate and up to date information plus your consultant and specialist nurse of course. So much has changed for CLLers in the last few years and the outlook continues to improve. I hope that you get the support you need and that you stay well for a long time to come. X
With regard to mutational status SophiaDeo mentioned the separate testing, however, a common medical perspective is to view the negative CD38 expression as a pre-indicator for mutated IGHV which is still considered more favorable than unmutated. The negative zap 70 is also a relative indicator for mutated status.
Newer novel therapies have evened the playing field in recent years especially for those patients with unmutated IGHV, 17P, ATM del, Trisomy12, and11Q. Yet, observations in clinical trials still show more favorable outcomes for mutated patients.
If you're doctor is of a probability perspective, then your 13Q + mutated IGHV is still considered more favorable while the ATM del is an offset measure.
I am not insinuating that diagnostic indicators should not be dismissed, as 17P and unmutated IGHV are not best of friends with FCR, however, given recent advances in CLL treatment and research dynamics, I favor cajunjeff's summary statement flag words regarding the diagnostic indicators, "less relevant".
The uptick is that your indicators are good generally speaking, you have good treatment options when ready, and the research community is still moving forward with intent for even better therapies.
In my view, having a specialist that is interested in patients as individuals, is interested in relevant research data, and who is up to date with the newer treatment approvals is of the greatest advantage to a CLL patient.
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