I have read on the Fact Sheet about Test Before Treat that if a Fish Test shows a deletion of the 17 chromosome or del(17P) that BR treatment will not be effective and should be avoided.
I am 11q deleted and had one treatment of BR some 23 months ago (March 2019) with a severe reaction. I have not had treatment since but my readings arestarting to move up very slowly over the past 10 months. But I am suffering severe fatigue.
I am now starting to do some research on possible treatment options. On the Aussie site Lymphoma.org.au it states "The most common deletions occur in parts of chroosomes 13,11 or 17. Deletionnof part of chromosome 11 or 17, or known as del(17p) are linked to poorer prognosis.
Can anyone explain whether the reference to del(17p) refers to 11q and therefore BR should have been avoided ?
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Joffre1
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You are referring to the section on FISH testing in lymphoma.org.au/types-of-ly... , where it concisely states with respect to the prognostic value of FISH testing: "In some people with CLL, part of a chromosome may be missing. This is called a deletion. The most common deletions occur in parts of chromosomes 13, 11 or 17. Deletion of part of chromosome 11 or 17, or known as del(17p), is linked to a poorer prognosis. The loss of part of chromosome 13 is usually linked with a slower-growing disease and a better outcome."
The text doesn't cover how FISH testing is used to select treatment options, just the statistical likely time to first treatment and overall survival time prior to the newer, targeted, non-chemo treatments becoming available for use in Australia, back when you received your first treatment. It's just del (17p), or TP53 mutated CLL that doesn't respond well to the older chemo treatments like BR or FCR. That's because the small arm of chromosome 17 (17p) contains the TP53 gene, which carries out the very important role of providing the means of checking DNA copies during cell division. If the DNA copy is wrong and can't be repaired, cell destruction (apoptosis) is triggered. Chemo treatments like BR and FCR disrupt the DNA copy process in cell division and rely on an intact 17p chromosome arm with a functional TP53 gene to work. 11q del CLL is associated with a bulky node presentation; BR would still work, but because you only had one treatment, you were unlikely to get a long remission, because you would still have had a significant amount of CLL present in your nodes and bone marrow.
Incidentally, unless you could find a clinical trial for treatment naive patients back when you had your first treatment (which were very hard to come by in Australia), your first treatment would still have been BR or FCR. Even clinical trials can have a BR or FCR comparison arm.
The good news for you is that because you've now had prior therapy, you qualify for Ibrutinib. You may also be able to access other treatment options through clinical trials, depending where you live.
Hello Joffre, Joffre is a variation of the name Jeff I have not seen before. I like it.
I wrote a series of Cll posts for dummies linked to below. If you want to understand FISH testing better, skip straight to the FISH test article.
It would probably make a little better sense to you if you read the other three first. I did not write the articles in sequence, but when I put them in an index I tried to organize them in a way where one article gives some foundational information for the next.
I hope it’s helpful to you. I agree with Neil though, if you are eligible for ibrutinib now, you have an easy treatment choice that doesn’t involve chemo and works for most all FISH types. And ibrutinib is not your only option.
Hi cajunjeff thanks to your and Aussie's response. You guys are a wealth of knowledge to us all.The name Joffre comes from a street I use to live in so far back I can hardly remember.
This gave me more information in addition to what I have learned since being diagnosed with CLL with 17P deletion in 2013. The FISH test showed 8% of the 200 cells viewed. So that means 92% are intact? Does that change? My doctor does not see the need to redo the FISH test. I was on W&W 1 yr and have taken Imbruvica since. My blood work have been good and these years later, I am still here. I still wonder " but for how long?" I try not to think about what may happen. but the unknown is scary.
Yes, it can change over time. The time to repeat testing is when you are planning your next treatment. Most even those with del17p do great with ibrutinib frontline for many years.
I agree the unknown is scary, but we have to remember that we have a CHRONIC disease state. Like diabetes and heart disease, it likely isn't going away, so worrying doesn't help. It's classified "chronic", it usually doesn't cause urgent problems like a heart attack or sky high/bottoming out blood sugar does. IMO it's hard to not worry with the word "leukemia" and "cancer" in there, because we aren't used to cancer that isn't aggressive & needs to be treated urgently. This is very unsettling. IMO the fact that you are doing so well on Imbruvica means your particular 17p isn't super aggressive & the BTK is doing it's job. Maybe think about it this way?...."Try not to worry about falling on the ice, until the ice is actually there". You sound like your disease is stable and controlled, please try to focus on that happy thought!
17p del rarely responded to standard chemotherapy, while 11q ones did. That's why they used it on you, you weren't 17p del. It's the particular deletion, not the presence or absence of any deletion, which indicates what treatment may be best. And many many factors are used by docs, not just a deletion status. Age at onset, rate of progression, what the patient is willing to do, can all play a part. If you are in a nation that follows a protocol, or in the US have an insurance that follows a formulary, these can also play a part. A recent (last year) ASCO discussion shows that some specialists, for certain patients, still believe regimens that contain standard chemotherapy are the best option. It's still a debate, others disagee.
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