Hi everyone. I saw my consultant on Thursday with the results of my recent blood test and PET scan. The PET scan only showed the enlarged lymph nodes that I knew about in my neck. None in my chest or abdomen which was good news. He told me I have the chromosome abnormality trisomy 12. He said it's not the worst and not the best one to have. I really don't understand it. Have I had this all my life? If you have this abnormality do you always get CLL? He has kept me on watch and wait as apart from lots of colds and sore throats I'm not getting any of the B symptoms yet.
Thanks for listening. Cindy.
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Cindy1462
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I question the use of a PET in CLL it is a poor scan type for us... however a combined PET/CT would be better...
Trisomy 12 may be a whole extra chromosome or an addition of part of a chromosone that has broken off from somewhere and joined on to chromosome 12... so you have 3 bits rather than the normal 2. Where did it come from? Likely a translocation, a piece broke off another chromosome...
Trisomy 12 in the CLL genetic family is in the middle, slightly better than worse.
Your revolving colds should be discussed with your GP and perhaps request a test for immunoglobulin levels... this gives an indication into the state of your immune system...
My husband is trisomy 12. As you were told it is considered 'intermediate' but it is known to respond particularly well to FCR if you ever need treatment.
(My husband's theory is that the abnormality occurred when he had chickenpox as an adult. He said he never felt really well after that. However this is his personal theory and untested or proven)
Thank you for responding. Can I ask how long your husband has known he has CLL and if he has needs treatment yet? I'm trying to gauge how long most of us with this last before being treated. I hope your husband is well. Thanks Cindy.
Excuse my reply to your question of Foley 2009, but there are statistics on time from diagnosis to treatment which will provide a better understanding than just asking here. About 30% of us never need treatment and for the rest of us it stretches from shortly after treatment to a decade or more later. There are two big dividers into groups likely to need treatment fairly soon and much later if ever and they are CD38 status and IGVH mutated/unmutated. So you can quickly appreciate that with all these prognostic markers, we quickly get to a situation where we have our own path.
Thank you Neil. I am still learning about this condition. Can you tell me what CD38 status and IGVH means? Would these have shown up on my Fish test? My consultant didn't mention these just the trisomy 12. Half of me wants to know when I will need treatment and half of me doesn't. Cindy.
Your CD38 status should be included in your flow cytometry test results, which is the definitive test for a CLL diagnosis, so you should have that. CD38 negative correlates with a better prognosis, but can change over time. IGVH mutation status doesn't change or if it does, is thought to be due to poor laboratory technique (it is a difficult test to do accurately). A mutated finding correlates with a better prognosis.
I'm sure most, if not all of us can identify with how you feel about learning this information...
I agree with Neil that individual journeys are different and our experience will not necessarily be how it pans out for you.
However we do wish that we had known about trisomy 12 when he was diagnosed as we feel we would have managed our own expectations and lives differently.
My husband was diagnosed in March 2013 and at that time we were told that he could be on watch and wait for ever. The consultant did say that he thought it could be 5-10 years before he needed treatment. Knowing what we know now we realise that he simply did not have enough information to be able to say that.
It was therefore a bit of a shock at the end of 2014 when he needed treatment. At that point they did a bone marrow test and Fish analysis which showed the trisomy 12 and IGVH mutation. He did FCR last year, is in complete remission and life is great at the moment. As I said above trisomy 12 is known to respond well to treatment.
I believe strongly that if we had known about trisomy 12 at the beginning we would have managed our expectations (and some life choices) differently. I have read widely about this, thanks to the very informed people on this forum, such as Neil
Once again, each journey is different. And I hope this is not too much information for you. Having met some of the leading CLL researchers in the UK I am convinced that the future is bright and in the near future it will either have a cure or be manageable as a chronic disease such as diabetes.
Yes my consultant told me that I propably wouldn't need treatment at all last year when I was diagnosed. Now I have had a private consultation and the FISH test which showed I have Trisomy 12. I am glad that I know as I am relatively young (54) so it's not realistic to think I can go another 30 years without treatment of some kind or another but at least I know there are good treatments there when I need them. Thank you for all your info. I am still learning what all the terminology means. I hope your husband has a long and happy remission.
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