Inherited?: CLL Society ASH 2019 Inherited? Does... - CLL Support

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Inherited?

bkoffman profile image
bkoffmanCLL CURE Hero
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CLL Society ASH 2019 Inherited? Does an inherited defect in the germline ATM tumor suppressor gene contribute to the development of CLL? Dr. Jennifer Brown found that one in four CLL patients studied had a variance (mutation) in their ATM gene. cllsociety.org/2020/11/ash-...

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bkoffman
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GMa27 profile image
GMa27

All I know is that my Dad had CLL, his twin had a blood disorder and their mother had CLL. I have it but my sister does not. It seemed inherited for me. 💕

AnneHill profile image
AnneHill

My father died in 1968 of cll. He was 45 and was diagnosed 3 years before. I was diagnosed age 43. I had fcr aged 52. Unfortunately my father was brought up in a childrens home and I have no knowledge of his family.

I pray my family dont get it. My son is 41 and my daughter is 39. Anne uk

Cathy31 profile image
Cathy31 in reply to AnneHill

My dad had, no treatment s and died at 77 from richters , I was diagnosed a few years later still in W&W

ladyscream profile image
ladyscream in reply to Cathy31

So interesting,My Father had Cll too,

he had chemotherapy and other treatments which gave him 5 years.

He passed away age 72years.

As you said before, praying my children don’t get it.

Although treatments have improved so much.

I feel lucky to have Cll now rather than when my Father had it 20 years ago.

AnneHill profile image
AnneHill in reply to Cathy31

Its so sad and we are lucky that there are treatments. I have cll for almost 20 years. I am 63. I had fcr in 2010 and I take ibrutinib now since last June.My Dad had blood transfusions and had pneumonia and pleuracy when he died. I was 10.

I feel sad that there are drugs like ibrutinib now and he had nothing.

I hope you stay well but there are treatments now. Anne uk

in reply to AnneHill

I know what you mean. I worry too about my daughter getting it. My mother had Non Hodgkins Lymphoma and Dad had multiple myeloma. I was first diagnosed with NHL 20 yrs. ago which then progressed to CLL and I'm on Imbruvica now for almost 5 yrs. I was diagnosed with NHL when I was 57 and my daughter is 58 now. I pray she doesn't get this disease. It's bad enough that she inherited migraines from Mom and I. This is always on my mind but so far her blood work has been excellent.

AnneHill profile image
AnneHill in reply to

I try not to think about it but I would worry if either of them had symptoms. My blood tests showed my white cells were slightly high but my GP said he thought I had an infection. I had regular tests for another problem. They noticed my blood cells were high and asked for a repeat test. It seems like something was wrong for a while before I was diagnosed.

My Husband used to get migraines. We realised it was low blood sugar and needed to eat on time. My daughter gets them if she is tired or its hormone related. Nasty.

scarletnoir profile image
scarletnoir

Reading the summary of the paper shows that the risk is around 25% when linked to the gene mentioned, and around 12-15% otherwise - so around double. It seems to be a contributory factor, but not the only one. More work needs to be done.

FWIW - as far as I know, I am the first member of my family to get CLL, so one of the 75% where there was no known predisposition. Of course, I had the other risk factors... male, ageing (63 when diagnosed) etc.

Progress is being made, sometimes in small steps, sometimes (treatment) in larger ones...

Big_Dee profile image
Big_Dee

Hello bkoffman

I suspect that would be the case due to the spread of CLL cases in mostly European ancestry. Blessings and Merry Christmas.

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