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CLL Support Association
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Does CLL run in families

My mother was 66 when she was diagnosed with Lupus. She was 87 when she died. About a year before she died she was diagnosed with CLL. Approximately 5 years before she died her rheumatologist ordered an abdominal cat scan because she had lost 30 lbs. Coming off prednisone and the test showed internal lymphadenopathy so, she probably had cll then and then I was diagnosed. I'm wondering it there is a familial connection? I have 2 sisters who are fine.

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There can be familial cases which are being studied in some centers. In my case it seems to be blood cancers in general. My grandfather is as far back as we have information - multiple myeloma. His son also had MM, that uncle's two sons both have Follicular lymphoma, and one of their son's had a transplant a couple of years ago for AML. But when you consider how many cousins and siblings there are (big Catholic family) some with families of their own, there is no specific pattern. There are lots of other cancers on that side of the family, also. One cousin and I worked on a medical family tree to be shared, just so people know what to tell their doctors to be aware of, then let the doctors do the thinking about it.

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Thanks for your input pkenn

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Hello, Yes my family mother and father both have CLL. My mother died from cancer ( other cancer) 2.5 years ago, but my father thanks God still alive

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Dear Lady Di,

I'm a 3 generation familial case of CLL as best I know. I think its about a 7% chance for any CLL patient to be familial. Anyone please correct me.

My grandfather born in 1898 died in his old age in his late eighties, and had CLL diagnosed. My father got it in his sixties, and myself diagnosed in my mid fourties. I'm now early fifties and post FCR treatment.

Just wish I had a time machine to take my dad some treatment, and all the good advice from all the folks here on HU.

Best wishes to all,

Ernest

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Thanks for your reply Ernest and best wishes, Dianne

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Familial CLL has been extensively studied for 70 years, and makes up about 7% of cases, so its fairly rare.

There is also more F-CLL in families of Ashkenazi Jewish ethnicity from Central Europe.

That said both my sister and I have CLL but we have Irish backgrounds and no known lymphoma in the family. CLL is very erratic the way it travels in families, often effecting one sibling then skipping a generation etc.

So you never know.

~chris

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I'm Irish and Portuguese and am not sure about my ancestors health issues although my mother was diagnosed with CLL about a year before she died at age 87. My father had bronchospathy at age 40 and we were told he had a spot on his lung which we were told it was from emphysema and he died at 56 from a hard attack! Cystic fibrosis is in our family as I have a 36 year old son with it and at times I could have sworn I had it! auto correct: heart attack My mother was the one who was Portuguese and my father Irish. ....my 2 sisters are fine my one brother died at 49 from a blood clot due to a fall so don't know if he would have gone on to develop cll or not.

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I believe The Ohio State University James Cancer Center was doing a study on the family connection of cll. I learned of it when I visited for a consultation. They asked if I would be a part of it and I gladly would have except I lived too far away for routine blood draws for this purpose. You might contact them at 410 W. 10th Ave. - Columbus, OH 43210-1228;

614-293-3196 or 614-293-8657; in US 800-293-5066 8 AM to 5 PM EST.

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Hi, my brother has CLL and aggressive prostate cancer. Our family has a CHEK2 mutation. There is literature on the NCBI/NIH website re CLL & CHEK2. CHEK2 causes many primary cancers so if you can get a multigene panel testing done for the Oncogenes as several of us did in our big Irish Catholic Family you might have something pop. I do not have CLL however a bone marrow biopsy I had done because of chronic anemia that is not nutritional and some other whacky blood results showed a .7% monoclonal B lymphocyte population in my marrow. I also had a nuclear bone scan showing marrow dyscrasias which was another reason i had the biopsy. Right now my hematologist said that it is considered MLUS. But i firmly believe the CLL in our family is related to CHEK2. Every person in my family who has had the CHEK2 except my niece who is only 37 has had cancer. So it’s a good one to check for especially with multiple seemingly unrelated cancers in one family.

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Thanks for the info....sidenote: did the bone marrow biopsy hurt? The thought scares me to death....best regards, Dianne

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It definitely hurt but it’s over quickly. I’ve had much worse so in the scheme of things I’ve had worse in the dental chair.

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Do they numb you up at all and give sedation

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Yes but it’s local. And that hurts too. You can have it done in a hospital or surgery center with a sleep like anesthesia but they did not offer that to me. If i have to do it again I might choose that option. But again—I’ve had worse & it definitely wasn’t fun but it was bearable. However if you are already sick and in pain then no sense in putting yourself through that. They will also give you a benzodiazepine like Ativan or Xanax beforehand as well so if you have to have one insist on either a benzo to calm the anxiety or going to sleep. You have to be your own advocate I’ve found.

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Hi I guess I am one of the 7%'s. My Dad had NHL diagnosed had CLL diagnosed at 57. Just on Wait and Watch lke he was until a Richter's transformation at 77.

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My grandmother had polycythemia myeloprolifera disorder, my father had CLL with thrombocytopenia (low red) and his twin had blood condition involving red blood cells. I have CLL. My only sister along with several cousins do not have any blood disorders.

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I would also be interested to learn of any studies in familial CLL. I was on W&W for five years, until earlier this year when I had to start FCR. My younger sister has been on W&W for fifteen years with CLL. Also my middle sister was dx with CML nine years ago and has been on medication since.

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