While I wait for my appointment to see a specialist at Dana Farber (June 1) and have only been seen by a local to me Hematologist ( Diagnosed in January 21) I understand that the 13Q is the better of the the Marks but that the Loss of ATM ( 11? ) is not good. I read that having the ATM mutation can make me resistant to chemo and not a candidate for newer (Pill) treatments. Also that the ATM mutation will or can make the CLL progress quicker and more chance for a secondary cancer. Anyone with these same markers or anyone that can shed some more light. Right now I'm at W&W and slightly swollen nodes are only symptoms. Its just a long time between now and June and the ATM documents get very technical in reading and understanding. Thank you all for any insight!
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I had 3 rounds of FCR chemo and reached remission. I had one chance for chemo due to my age. I decided to take that last chance. It was uneventful and I am feeling great. Almost 3 years post chemo.There are lots of treatment choices and those choices depend on markers and age. Always good to get second opinion.
Most of what you posted seems consistent with what I have read from our CLL expert doctors (I'm not one).
However I think they would disagree that having 13q and ATM deletion is a problem with the modern targeted treatments (you called them "newer pill treatments").
I am fairly certain your Dana Farber doctor will say that is NOT accurate.
The targeted treatments like Ibrutinib and Venetoclax work well controlling 13q & ATM, perhaps not giving the longest PFS (Progression Free Survival) but much better than Chemo.
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We have had lots of previous discussions about ATM deletion- this link will show the list of 140 times that ATM was mentioned in previous posts:
Thank you Len, I will take a read on those posts. Dr. Jennifer Brown is who I am seeing in June also. So I think I will be in one of the best places. Thanks again for your response.
ATM is the gene located on the q arm of the 11th chromosome. I think saying you have a loss of an ATM gene is just another way of saying you have 11q deleted cll. The ATM gene is an important cancer fighting gene, like the TP53 gene on the 17th chromosome p arm, so losing that gene can carry a worse prognosis compared to 13q. 13q carries a better prognosis if it is the only abnormality.
To me, the language they put on the results about "worse" prognosis is a bit outdated and could be said differently. 11q cll responds quite well to the newer drugs.
11q cll can also respond to chemotherapy, just not as well on average as 13q cll and trisomy cll. I think if you were in the UK your first treatment as of now would still be FCR (chemo), that might change soon. In the US most cll doctors would not choose chemo for 11q cll, but rather something like ibrutinib.
11q (ATM) cll can be managed very well and long term with the new drugs. Any survival tables you might see on 11q cll are likely very outdated and useless. The new drugs are turning cll into a disease that can be managed for years, if not a normal life expectancy for many people.
Here is a link to an article I did about FISH results that might help you understand how 11q deleted just means someone is missing part of their ATM gene on the q (long) arm of their 11th chromosome. I hope the info is helpful to you.
canjunjeff- Thank you very much for your explanation. I copied and printed your article and looks like i might understand better after reading it a few times. So when asked what kind of CLL i have would it be correct to say 13q deleted and 11q deleted?
You are welcome. I am not a doctor or cll expert, but yes, as I understand it, you have 13q and 11q cll. That means that within the nucleus of your cll cells (dna) you are missing genes on the long arms of your 13th and 11th chromosomes. The ATM gene is one of several cancer self repair genes we have so having it missing makes it harder for your body to help fight your cll. The new drugs treat 11q cll quite well though.
Here is another dummies article that might help you understand about cancer cells and chromosomes. It’s complicated even when dumbed down, it’s taken me a while but I think I understand it a bit better after a lot of reading.
Boy do I agree with you about that "worse" word you mention, speaking as someone with the 17p deletion. Talk about the Voice of Doom. Another reason never to ask Dr Google about mutations. 😊
Hi, I am currently on a Phase 2, 3 drug trial, I am TP53 and 17p deleted so chemo wasn’t an option. Dana Farber is a wonderful place. My CLL specialist is Dr. Jennifer Brown. You are in GREAT hands. I have found her to be incredibly knowledgeable and thorough. Besides marrying my husband, best decision I made hands down was getting her as my CLL specialist. She is worth the wait. Wishing you all the best!
Hi, I am ATM and 17p deleted and tp53 mutated and I have been taking Ibrutinib and venetaclax since October 2019. I had to switch to Acalabrutinib because of serious skin reactions. By the way, Dr. Matthew Davids agreed to see me by telehealth to give his point of view on my condition. I have a hematologist/oncologist from Vanderbilt. So as I understand, I have some of the high risk markers and I can take the newer targeted therapies and I'm doing great! Recent CT and PET scans show NO enlarged lymph nodes and all my blood tests are that of a completely healthy individual! I also survived a pretty nasty case of covid 19 (18 days hospitalized and still need oxygen but just in the morning). So my friend anything is possible. Your markers should not prevent you from taking these life saving medications! Good luck to you! PS, I also have BRCA2! Dodged that bullet, too!
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