I read that a second chromosome problem changes the prognosis and nothing about 14q+ is good regardless of translocation partner. Anyone have this combination?
I have 13q but I also have 14q+ (40%). My Dr d... - CLL Support
I have 13q but I also have 14q+ (40%). My Dr doesn't think the 14q is any big deal since it is not a t(14:11) Not what I read. Thoughts?
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Chicagogirl
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2 Replies
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AussieNeilPartnerFounder Admin
Chicagogirl,
Genetic testing is a double edged sword at least. For those that can't gain access to it, we live with the uncertainty of what variation of CLL we have. Those that do, may not like hearing what has been discovered, or end up worrying, perhaps unnecessarily, about what may be install for us. And then some of us may be relieved to find that they have apparently benign results, but due to our still very incomplete understanding of the complexity of CLL genetics, be surprised at a more aggressive outcome than we were anticipating.
I think it is best to use genetic testing to help you make the right choice of a traditional treatment, if that's all that's available to you. That can save some of us from going through ineffective chemotherapy where we get the negatives from the treatment with little or no reduction in our CLL tumour load. Genetic test results may not even be relevant if you can get into a trial with the newer small molecule drugs (assuming you want to do this),should you get to the stage of needing treatment.
How CLL progresses still remains very much an individual journey. You've got 13q, which is associated with long survival times - usually not even requiring treatment and 14q+ , which is associated with a shorter time to treatment and survival time - that you know of. I suspect your doctor is taking a balanced view of your results and knows that what's really important is monitoring the rate at which your CLL progresses.
Use your knowledge of your genetic test results as an incentive to improve your health and fitness to the extent CLL and life allows you, so that if you do get to the stage of treatment, you'll get through it more easily. You'll still gain the benefit from feeling better even if you never need treatment.
Neil
Hi I agree that you can make yourself ill just by worrying but that doesn't stop you. I think that what is equally important are your blood results over a period of time. From this your Dr/hospital can see how the disease is progressing. Here at healthunlocked we all know what Watch and Wait is like. It can be Waiting and Worrying. I think the advice to keep as well and fit as you possibly can is good advice. Good Luck
