11 and 13 deletions

I recently found out from a FISH test that I have the 11th and 13th deletions.

I know that the 13th is good but that the 11th is "bad".

I am in my 2nd month of chemo right now and responding great.

The doctor said nothing of the 13th deletion but said that the 11th will probably mean that instead of a 5 year remission time mine will be like a 2-3 year remission. He said that when he sees the numbers going up at that time, he would give me oral meds to control it.

Does anyone have these deletions and how has it effected you post treatment?

I know I havent even finished my first round of treatment and Im already thinking about my relapse

What can you tell me?

21 Replies

  • You have what is known as 'mixed karyotype'... in your case the 11q trumps the 13q ...as you have observed... 13q is sort of along for the ride...

    What treatment are you having?


  • Chris, does that mean everybody with CLL is mixed karyotype unless your CLL cells are 100% of a particular genetic aberration eg. trisomy 12.

  • No ...mixed karyotypes are rare... but some patients pick-up second FISH markers over time, and more often after treatment. It is what is known as clonal expansion... nothing is constant....

    The numbers matter as well... what percent of cells carry damage... tells more of the story.


  • Based on what Im reading I have 98% of 11q.

    The doctor acted like it just wasn't a big deal that why Im confused. I have 51% for the 13q

  • I have heard that sometimes insurance doesn't cover FISH so people don't even know?

  • Clinically, FISH really only has a single purpose, which is to separate 17p deleted out from the group for special treatment...

    That is the way it is viewed in managed healthcare situations, however in the U.S. it evolved into a prognostic marker...

    I had a FISH done in Canada last year, after 17 years, they wanted to know what my markers were considering my lengthy watch and wait, lousy treatment response and a Richter's transformation...

    I was FISH normal... no known markers...

    But I know many CLL patients outside the U.S. who have never had it done...and likely won't ever...

    People put far to much store in FISH results in my opinion, but there is a great deal more going on in subclones and IGHV stereotype B cell receptors, and many genes we know very little about...

    My advice, don't get hung up on FISH results it is only one piece of a complex puzzle, and its impact for prognosis is waining...


  • Thanks for your response

    I am at the Cleveland Clinic now but will be getting a second opinion from at The James at The Ohio State University on Feb 10th. Dr. Byrd is there and he seems to be right on the edge of the new stuff. I will see what they have to say. I will get my head straight!

  • I would love to join you with a visit to DrByrd. He is one of the top 5 docs for us in MY opinion.

    Alas, insurance, insurance, insurance.


  • momof, I will be going to se Dr. Byrd in the spring. I would really appreciate any feedback you can give me about your visit. Thanks Maria

  • Did you like Dr. Byrd? He is one of the options I am looking at right now.

  • I just finished my second round of bendamustine. and rituximab. I have responded super well

  • Glad to hear your responding well . I thought my doctor also said 3 years for me. I just passed 7 with Treanda only. Maybe there's something to this single agent only time will tell.Best wishes to you and all.

  • Ballyhoo,

    I'm glad you are doing well. Do you know what your deletions and mutational status are?


  • Jeff, I'm not totally sure of all my deletions or mutations. All I know it's something with to do with 13 q . Best wishes to you and all.

  • I am really struggling emotionally today. I need some positive words and support about this stuff. I unfortunately read studies last night that upset me. I know that studies are just that and that my situation is unique. I just turn 46 and have 12 kids ( I have 10 adopted kids and 2 birth). I feel like the boards where people are in the same situation is a better place for me to get information. Any positives you can through my way :)

  • Momof12,

    Finish your treatment and heal. Don't worry yourself about the length of the remission right now.

    Every story is different. I once read a quote that life is like a book. It's best understood reading it backwards but must be lived going forward.

    Enjoy your remission. No one guaranteed anyone tomorrow. Enjoy those precious gifts called children.

    In 2-5 years who knows what treatment will be available? Maybe a cure, God willing.


  • Hi Mom of 12,

    Sorry to hear you're struggling... I think we all have times like that, especially when we read some new study that doesn't seem to bode well for us...

    But as you say, you are unique! Everyone's experience is different. Some people with supposedly "not so good" FISH results do much better than some with supposedly "good" results. There's a lot more going on behind the scenes with these genetic markers, that is not known about as yet.

    And you say you've already responded super well to just 2 rounds of Bendamustine and Rituxumab. That's brilliant, and better than some folk experience.

    Even if you do only have a few years remission, by that time the CLL treatment scene will have changed a lot - for the better. Your doctor has mentioned oral meds you can take if your numbers go up again, and by that time they will be even more tried and tested, so will be even safer and more effective. (There are many such oral meds, eg. Ibrutinib, Venetoclax, ACP-196, Obinutuzumab and others).

    While you're actually going through chemo (ie now), you're probably feeling extra emotional. I've heard people say that the drugs do give you some extreme up and downs, both physically and emotionally. But you've done 2 cycles now - so you're probably a third of the way through the treatment. Try looking forward to the end of it, and plan some specially nice things to do...

    I went through a treatment last year that had complications and had to be stopped. That wasn't easy.. :-( but my CLL appears to be stable for now, and I'm not needing any treatment at the moment. :-) I'm trying to make the most of it, and enjoy each day as it comes...

    I do hope you feel better soon...

    Wishing you all the best for the future,

    Paula (in Sheffield, UK).

    P.S. Before you mentioned the 12 kids - I was reading your name as Momof, probably because in the UK we say Mum rather than Mom).

  • Response to chemo-immunotherapy is often less durable with del 11q (the worse deletion always trumps the good one). However 11q responses nicely to the novel agents. As others have said, FISH is just one piece of the puzzle. Stay strong. Brian Koffman CLLSociety.org

  • It's nice to see you on here Doc. That interview with Dr Byrd on the CLL Society was so positive. That Acalabrutinib sounds great.

    OP, momof12, you should read it.

    I hope you are well Doc. What you prescribe is hope.


  • Thanks so much for your thoughtful note. It made my day- No: it made my week! I am touched by your kindness. Stay strong Brian

  • Brian was ne of the first CLL patients I connected with, and he has been one of my biggest sources of help and support, personally and through his blog and posts over the years.

    Mom, I was diagnosed in 2003 after 5 years of telling my then doctors that something was wrong and being written off. I was very sick and everything I read said I'd be dead in five years. After treatment to get things under control I got 10 years before needing treatment again. My recent treatment, Gazyva, aka obinutuzumab, a non chemo treatment, was not even on the radar back then. Rituxan was fairly new and Bendamustine was not an available treatment. The big new news then as far as cutting edge treatment was Campath, now not used very often. Things are moving so fast treatment wise that I'm sure that your next treatment, whether in a couple of years or 10 or 20, if you even need treatment again, will be something new.

    I'm sure you will enjoy meeting Dr. Byrd and getting his input. Keep educating yourself, but look at advances in treatment and leave the statistics for researchers. They are about what has already happened. We are happening and causing those statistics to be revised.


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