I was diagnosed 8 years aho. Last week my brother told me his wbc was slightly elevated so his doctor is sending him to a hematologist.
I was wondering if anyone knew if CLL can be heredity. Would my brother be more likely to get it since I have it?
I have not read anything that suggests it can run in families, but I know how knowledgeable so many people on this forum. I feel like you guys are the best source of information I could have.
Does anyone know ?
About 5 to 10% of CLL is thought to be hereditary. Blood relatives don't necessarily develop CLL, it can be another blood condition. More here: healthunlocked.com/cllsuppo...
Neil
That reminds me:
My brother got checked out after I got DX with CLL and found out he has an excess number of smaller Red blood cells, but more than functional (and no CLL), and has no effect on his fitness, in fact seems to be the opposite.
Ernest
Hi Peggy,
As best I remember only about 7% of CLL cases are hereditary.
Here is a much better write-up from Brian Koffman's website:
cllsociety.org/2018/06/fami...
(From memory also) In general the age of diagnosis jumps about 20 years younger in each generation (where it does go through the generations). So e.g. you could have a parent that had CLL but didn't know it.
e.g. My Grandfather had it in his 80's (unknown to him) my father in his 60's and myself diag in my 40's.
So for me that's 0.07 x 0.07 which is kind of a low number, but here I am.
I'm now mid 50's
There are lots of other reasons I think your brother could have an elevated wbc but worth getting checked out.
Best wishes,
Ernest
Definitely hereditary. My Dad had it, his twin and their mother. I have it, my sister does not. Nor my cousins yet. So it's definitely a possibility but not high % so most hematologist don't bring that up. Many CLLers on other sites have had family members with it. I let my sister and cousins know to just be aware of WBC creeping up or if they feel unexplained fatigue or any nodes pop up. I felt wonderful for 12 years on W&W so I never would of known I had it. 💕
My Mom had it and was never treated, I have hat it 31+ years been treated 17+ years, my brother has it and is on Imbruvica, my other brother has some type of blood disorder not yet identified and a niece has it and is on Imbruvica/Rituxan . I have alerted all relatives to be on the watch!
Panz 🙏☘️💕😍💗🌞
You know Panz, you and your family must be of interest to the geneticists and medical scientists with your incidence level but incredible resistance to it too! There must be valuable information to be learned from your family!
Regards,
Newdawn
Yes, my one brother was approached and all of us agreed to respond in anyway there was an interest....so far that is as
Hi Panz:
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You may want to contact CLL Natural History Study at National Institutes of Health, Bethesda MD:
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ClinicalTrials.gov identifier: NCT00923507 Natural History Study of Monoclonal B Cell Lymphocytosis and Chronic Lymphocytic Leukemia
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a.Study, not a clinical trial. Accepts CLL patients whether untreated or previously treated. Study is in addition to your primary hematologist/oncologist.
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Contacts: Pia Nierman, Research Nurse, pia.nierman@nih.gov, and
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Susan Soto, Research Nurse, sotoS@nhlbi.nih.gov, 301-402-0797
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Len
My father’s father was diagnosed around 1960. Never treated, that we know of. Died in 1990 (at age 90) from something else.
My dad had it.
Hi Peggy
Unfortunately my brother and sister had leukemia CLL .. and didn’t get checked till they were really sick and died!
I promised my sister i would get check cause her doctor said it was hereditary.
2 years later i developed CLL..
I am glad your brother got checked. I pray that he doesn’t have it!
Some people just don’t go to doctor as it was with my sister and brother..
Take care
Best wishes
Littledab 💪🏻🧡
Thank you everyone for your responses. As usual all of you never fail giving me the information I need. You're a much better source of information than just using Google. It's so nice to be able to communicate with other people who have CLL.
hi , yes part of it it’s hereditary my father died from leukemia
Hi Peggy, all,
Apart from the fact that I am one more of these folks w family history (my dad had it), I am also part of a research register for family cases here in France, consisting of about 350 family cases by now in the hospital Pitié Salpêtrière.
They have just end of 2019 published a report stating that if you have a case in your family, your risk increases from less than 0.5% to about 3.5%. If you have 2 cases in your family, your risk increases to a little above 8%.
I have the article in French, if anyone wants to google translate it, let me know.
At 82 I am the oldest member of my family and I have no knowledge of any family member now or in the past who is afflicted with the disease.
I had an Uncle with Non Hopkins Lymphomas. Also another Uncle had Leukemia. Also a cousin had NHL too. So I think blood cancer is in our family. Take care. Cindi
My older sister was diagnosed with CLL first. Mine was found by accident only a few years later (I was 60) when I was hospitalized for something else - my middle sister has nothing. My older sister and I also had breast cancer and thyroid cancer. My middle sister -nothing. My two daughters are not interested in getting themselves lab tested or mammoed. I don't understand why. Both me and my sister are on watch and wait. Is it necessary to see a CLL specialist or is a hematologist enough? My high WBC count came out first when I had my stroke two months prior to hospitalization for burst bowel. No doctor said a word !! Later I was told that CLL could be dormant and brought to the forefront by a major event i.e. the stroke. First time ever that I saw my WBC count high. Both of us still on watch and wait although I think she is reaching some kind of time for treatment. She doesn't get copies of her labs and prefers to be clueless. I'm drowning in paperwork that I can't seem to understand. Interestingly enough, all of my cancers were the aggressive kind. All of hers weren't. I caught all of mine very early so I'm lucky. Weird tho why my body produces aggressive cancers.
Hi Peggy,
I was diagnosed with CLL at age 55 (6q deletion); my mother was just diagnosed with CLL at age 86, though she has muscled through breast cancer and lung cancer, not to mention a little skin cancer. My mother's mother died at age 56 with multiple myeloma. My sister is being monitored for multiple myeloma, and a maternal cousin age 70 is said to have pernicious anemia. We are a wreck in the blood department! I worry about my daughter, now 30 who has chronic infections but hopefully will not be going down this same path. We are lucky to have so many in science and medicine trying to help us. 😊
CLL absolutely can run in families. I am the fourth in a row in my direct line on my Father's side. I was diagnosed in April 2018, my Father had it, his Mother had it, and her Father also had CLL.
My Hematologist Dr. Jennifer Brown at Dana Farber has a personal interest in family heredity and CLL, and currently has a research study going on involving that.
Such interesting reading in this thread! I was initially diagnosed about a year and a half ago with CLL at age 51 (now 53). My twin brother was diagnosed with Guillain-Barré syndrome (a rare disorder in which your body's immune system attacks your nerves) about 14 years ago. At the time I had never heard of it and luckily he wasn’t left paralyzed. He still has residual issues however with most related to an ongoing battle between his nervous system and his immune system. But after my dx I began wondering if there was a connection between his Guillain-Barre and my cll as it relates to a hereditary possibility...after all we both are immuno-compromised but under very different conditions. Perhaps it’s more of a connection in an attack of the immune system rather than only a blood related connection...at least in my case perhaps. I have never looked into this or read any clinical reports on this so it is mere conjecture. Something to ponder I guess! My best to everyone!!
My mother had CLL dx at age 65. My brother was dx with CLL at age 58. My first cousin had multiple myeloma and I was dx with CLL 4 1/2 years ago.
You can add me to the list suggesting a hereditary component. my mother had CLL. I was diagnosed while she was really suffering. back then (1997) the literature I had said no hereditary connection, but within a few short years, Dr. Susan O'Brien, and her colleagues at the Mayo clinic had found evidence of hereditary influence and collected DNA samples from our whole family. My two brothers are still disease free. My 21 years of W&W ended a little over a year ago, but I'm making progress and feeling pretty good on Ibrutinib.
CLL and Secondary Cancer
CLL Staging
CLL with CNS involvement 
Re: Extremely High White Blood Cell Counts (Over 150,000)
