My husband was diagnosed with CLL in December 2019. He is currently on watch and wait. This news left us devastated at first.
I have recently become a member of this website and found great comfort in reading the experiences and advice of other members.
After another increase in his lymphocyte count, my husband was tested for chromosomal alterations and the results came back negative on the most common ones associated with CLL, such as deletion 13q14, deletion 11q22-23, deletion 17p12, and trisomy 12.
Would anyone know if this result could be an indication that he may never need treatment, or an indication of how his condition could progress? Is there any evidence that the absence of chromosomal alterations could indicate a better prognosis?
Would appreciate any knowledge or experiences you could share.
Many thanks.
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ForeverHealthy
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In the age of the new drugs, FISH status for chromosomal abnormalities is less important since the newer drugs treat all sorts of Cll.
A normal FISH test is thought to bring an intermediate prognosis, not as good as 13q but better than 17p.
There are other less typical chromosome abnormalities FISH doesn’t test for. If he has Cll, he has some abnormal cells.
That said, it’s certainly possible he could be in watch and wait a long time, if not forever. There are other markers that can predict if will need treatment such as falling hemoglobin, falling platelets and elevated B2 microglobulin.
There is a good chance anyone diagnosed with Cll today can live a normal lifespan. I have a post I did to help answer some questions newly diagnosed people have:
What you have described is generally termed a 'normal karyotype'. Slightly strange terminology, because our condition is not normal. I have a normal karyotype and have been on W & W for nearly 15 years. But there is a 2nd factor - IgVH gene mutation status. Regardless of chromosomal alterations, it is a prognostic factor on how quickly the CLL may progress. It is counter-intuitive because IgVH mutated is a favourable prognosis, whilst IgVH unmutated is less favourable.However, CLL is extremely heterogeneous, and all these markers can be used as a general guide only, as they are simply an outcome of statistical averages.
I received a normal fish test during 2009. I was Rai Stage 1 due to an enlarged lymph node in my neck (which is why I sought diagnosis) and a Lymphocyte count of 11. By 2013, I was Rai Stage 4, with falling haemoglobin and platelets and a lymphocyte count of 89. I had treatment with FCR (4 cycles) and have been in remission since. I do not know my IgVH gene mutational status, as it has never been tested.
As cajunjeff said, a normal fish result just means that our abnormality is not one of those commonly tested for, and there may be several sub-groups of "normal" with differing prognosis. We have been considered medium risk, but there is likely a wide continuum, and with new treatments and other advances, this now may be less relevant.
Also worth noting is that FISH results can change as time goes by and we can pick up new abnormalities. That why we should have another FISH before we start any line of treatment.
Please try not to stress....the word "cancer" evokes images of a disease that's incurable & often kills quickly. CLL is often more like , say, diabetes in my opinion....there are different severities, people live years as long as they modify their lifestyle/do treatment according to doctors recommendations. Many people go years/decades without needing treatment by doing other things (diet, stress reduction, exercise) and many have remission periods where the CLL is somewhat dormant. It's classified as "incurable" because it's not like getting a broken bone that heals & you go back to normal or near normal, or a bacterial infection that gets eradicated. You can't have an operation like with a diseased gallbladder & remove the problem. It's a disease state we have to adjust to & learn to live with! I am not happy having CLL, but I can think of lots of other diseases I would rather not have. Since I was diagnosed in 2011, I try hard to eat right, exercise, not stress. I am not always successful, but I try (ice cream, anyone? ) I was not expected to live long; I have a very aggressive form that up until shortly after my diagnosis rarely responded to treatment. The newer treatments are a miracle. And as you continue to read here, you will find people who have been on Watch and Wait (W&W) 10+ years. There's no easy way, to my knowledge, to tell whether or not someone will ever need treatment. We all respond differently, we all live different lives with different stressors. It's hard to live with uncertainty, that's a kind of stress in itself. But please try not to let your uncertainty affect how you live your lives moving forward.
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) I was not expected to live long; I have a very aggressive form that up until shortly after my diagnosis rarely responded to treatment. The newer treatments are a miracle. And as you continue to read here, you will find people who have been on Watch and Wait (W&W) 10+ years. There's no easy way, to my knowledge, to tell whether or not someone will ever need treatment. We all respond differently, we all live different lives with different stressors. It's hard to live with uncertainty, that's a kind of stress in itself. But please try not to let your uncertainty affect how you live your lives moving forward. 
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