Do you know if your CLL is familial or sporadic? - CLL Support

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Do you know if your CLL is familial or sporadic?

Cllcanada
CllcanadaTop Poster CURE Hero

CLL is an uncommon cancer, patients who have at least one relative with CLL are considered “familial” and others are considered “sporadic.” In population-based samples, approximately 5% of patients with CLL reported a family history of leukemia

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I have wondered about this myself actually Chris. I know my father had this diagnosis, but probably not until his 80s. He eventually died of a malignant melonoma of unknown primary. I understand that melonoma are a risk in CLL which is why many of us affected slap on the sunblock. However I would be interested to know if CLL is going to be a risk for my children in the future. Is there a genetic link? There must be I think.................

Caroline

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I do not know if my CLL is familial or sporadic.

I had never heard of CLL until I was diagnosed (2011-06 at 52yrs). Many of my close family have been diagnosed with cancer.

My middle sister was seriously ill with breast cancer, my eldest sister was recently killed by breast cancer, and my youngest sister was killed by lung cancer (smoking related). My parents died of old-age.

Because of the above, I was not surprised to be diagnosed. I am well aware of the statistics. I suspect, I think reasonably, we siblings have a pre-disposition.

In turn, this gives concern with regard to my daughters. Both keep very fit, unfortunately one smokes. I keep reminding her of our history. I resorted to graphic descriptions of my youngest sister before she died (not pretty), that hasn't worked either. I have resigned myself to the only truth when it comes to smoking, smokers will stop when they are able to do so.

Take care.

Newdawn
NewdawnAdministrator

Interesting. Since being diagnosed with this I've been trying to think of a single blood line relative who has had cancer and apart from a grandmother who died of breast cancer over 50 yrs ago, I can't think of one. I sincerely hope I remain the oddity in the family.

Newdawn x

I believe that at a CLLSA meeting a couple of years ago that the speaker said there had been no definite familial link found which is encouraging.

HAIRBEAR_UK
HAIRBEAR_UKAdministrator

Although small its occurance has provoked thoughts about my own kids distant future.

There does seem to be a lt of information highlighting the existence of familial CLL. I guess more understanding is being gained with genome wide testing involved in current studies but it is well known there is a familial grouping in a small percentage of known cases. But I don’t think they know why?

Finding the causes of CLL UK familial CLL trial

“A study looking at the genetic causes of chronic lymphocytic leukaemia

This study is trying to find out more about the causes of chronic lymphocytic leukaemia and to identifygenes that may be important in the development of this cancer.

There are a few known risk factors for chronic lymphocytic leukaemia. We know that CLL can run in families, but so far we haven’t found any specific gene changes that are linked to CLL.

In this study, the researchers will look at the genes of a large number of people who have chronic lymphocytic leukaemia (CLL). They will also ask them about their family history.

The aim of the study is to identify genes that could increase the risk of CLL.

cancerresearchuk.org/cancer...

Recruitment End 30/11/2013

Information about UK studies and trials from Cancerresaearch UK

cancerresearchuk.org/cancer...

The US NCI study: “the purpose of the study is to:

•Find the gene or genes that cause this type of leukemia to occur in families.

•Describe the clinical features of familial CLL.

•Explore whether families prone to familial CLL are also at greater risk of other types of leukemia or cancer.

•Identify biomarkers or markers that predict risk in family members.”

dceg.cancer.gov/geb/researc...

Global Research website: CLL INTRODUCTION: Familial CLL

cllglobal.org/CLLintro/fami...

This was a 2009 paper that came up when I searched the library: The molecular basis of familial chronic lymphocytic leukemia

haematologica.org/content/9...

The molecular basis of familial chronic lymphocytic leukemia

ncbi.nlm.nih.gov/pmc/articl...

Cllcanada
CllcanadaTop Poster CURE Hero

Great links Nick..thanks!

We are probably the first generation were this question really matters.

In previous generations things like CLL were not very well diagnosed and major conflagrations like the first and second world wars, would serious impact data. Further, people died younger of a multitude causes, before many cases of CLL could even begin and be diagnosed.

Certainly many people had a long lived Granny or Auntie, but these were not the norm. Also, how many people succumbed to pneumonia, 'the old man's friend,' when actually the underlying cause was CLL, undiagnosed.

Certainly, Richard Houlston and his team are hot on genetic markers for CLL and a number of candidates are being considered, but nothing stands out yet...

Now the feeling is that CLL is more likely passed down from generation to generation as a suceptability to Monoclonal B-cell lymphocytosis, MBL, the CLL precursor.

bloodjournal.hematologylibr...

One of the watershed studies on this topic is Goldin and Sager...

asheducationbook.hematology...

This is an importnt topic, especially regarding our children, that is not being disussed enough in the CLL Community...

Here is the link to the NCI Familial Study...

dceg.cancer.gov/geb/researc...

~chris

Always an interesting question, and with familial CLL running between about 8 to 13% of cases, this is of concern to many of us.

For myself it is not familial, as in both sides of my family there are no records of any cancer. But both sides of the family has lots of heart problems, which is the one part of me that seems to be working well.!!

My parents have both had blood tests in the last couple of years with no untoward results, which frankly was a relief to me. I sometimes worry about my children who are approaching their thirties - it would be bad luck if they ended up with CLL too. But one has already had a couple of low grade melanomas removed so there is plenty to worry about anyway. I try to stay optimistic about future developments with treatments and am hopeful for a cure within the next decade. :-)

When I was first diagnosed with CLL in 1999, it was as part of a blood test for glandular fever.which I thought my daughter had had about five years earlier at the age of 14 years (I was divorced from her mother) but my daughter informed me it was only "a glandular fever type illness". As a result of my diagnosis she was tested for CLL and the blood tests indicated that she has the condition, although she has not undergone a bone marrow biopsy. She seems to suffer a really bad cold a couple of times a year!

In 2004 my elder sister (by ten years) was diagnosed with CLL, which got us thinking that our mother who died the previous year aged 87 years may have suffered with CLL, as she used to go through periods feeling fatigued and generally "out of sorts".

Cllcanada
CllcanadaTop Poster CURE Hero

The big question I suppose, that I have never found and answer to and gives me some concern; are we sporadic S-CLL in our generation the first in a line of familial F-CLL for future generations?

Put another way...have we started a familial pedigree that we have passed down to our children and their children?

I suppose we will never know...

Cllcanada
CllcanadaTop Poster CURE Hero

This paper I found today answers the relative risk of passing CLL to the next generation

ncbi.nlm.nih.gov/pmc/ar...

"I believe that at a CLLSA meeting a couple of years ago that the speaker said there had been no definite familial link found which is encouraging."

I have also always been led to believe that CLL is not familial.

Having one or more members of a family that have been diagnosed with the illness is not a firm indicator that it is familial.

It my impression that they are still blundering around trying to find a cause, so why has this theory suddenly popped up?

ncbi.nlm.nih.gov/pmc/ar...

Erm....

Clicked on this and it came up as "not found - does not exist"

HAIRBEAR_UK
HAIRBEAR_UKAdministrator

This I posted earlier in the thread.

“There are a few known risk factors for chronic lymphocytic leukaemia. We know that CLL can run in families, but so far we haven’t found any specific gene changes that are linked to CLL.” .

It is hoped that the cooperation between patients and clinical research may identify the link and likely hood or rule out suspects. Newer testing caperbilities being used in todays studies may arrive at an answer?

The UK study

cancerresearchuk.org/cancer...

Recruitment End 30/11/2013

The US NCI study: “the purpose of the study is to:

• Find the gene or genes that cause this type of leukemia to occur in families.

• Describe the clinical features of familial CLL.

• Explore whether families prone to familial CLL are also at greater risk of other types of leukemia or cancer.

• Identify biomarkers or markers that predict risk in family members.”

dceg.cancer.gov/geb/researc...

HAIRBEAR_UK
HAIRBEAR_UKAdministrator

I guess the trials will establish what the “inherited genetic change in some people” is , if there is one? . At at the rate research is progressing, I am hopeful that a cure will be discovered before this illusive link.

From Cancer research UK

cancerresearchuk.org/cancer...

Family history of CLL

We know that there is some kind of inherited genetic change in some people who develop CLL. It is much less common in some ethnic groups, for example. We know that CLL can run in families. But so far, we don't know of any specific gene changes that are linked to CLL. Studies show that people with a first degree relative with CLL have a 6 to 9 times increased risk of developing it themselves.

First degree relative

A first degree relative is your parent, brother or sister, or your child. Half their genes are the same as yours. This only applies to blood relatives

I have no idea as to the answer to this. However I was diagnosed with CLL 6 years ago when I was 64 and my brother ( who is 3 years younger ) was diagnosed the next year with CML.

Cllcanada
CllcanadaTop Poster CURE Hero

Lets try the link again...

ncbi.nlm.nih.gov/pmc/articl...

Speaking with my father in law about cancer in his family, he says he has not heard of one single case of cancer.

I was remembering I read somewhere that men with diabetes had double the risk of B cell cll, (www.cancerresearchuk.org/ab..., and it caught my attention that although he does not have diabetes both of his parents do, each of a different kind.

I have now been to a few "specialist" and they all "swear" it's just a coincidence but my Paternal grandfather died of CLL in 1982 at ~62 years old. All we know is he died of CLL (no one remembers anything except he had Leukemia but no one knows if he really get treated) then when I was diagnosed with CLL in 2012 my father gave me a copy of the death certificate and it said cause of death Chronic lymphocytic Leukemia...I was 38 at time of diagnosis.

Cllcanada
CllcanadaTop Poster CURE Hero

It might be coincidence, but as a child of a former CLL patient your RISK of CLL is greater than someone without a lymphoma in the family... this is fact... but it is complex, often skipping generations and it is a non Mendelinian progression...

CLL also tends to run in families of Ashkenazi Jewish ethnicity... familial studies take many generations to get a pattern, the deepest study is 4 generations in CLL.

~chris

mgh348
mgh348
in reply to Cllcanada

I am of Ashkenazi Jewish ethnicity with CLL, but no family members have been diagnosed that I know of. Of course, that doesn't mean no one had it.

My physician and the World Trade Center health program's physician agree that my CLL was caused by living and working only 2 blocks from the World Trade Center. I was exposed to many toxins for months after 9/11.

A knowledgeable Doctor once remarked when asked this question, that he anticipated about 20% of patients had familial Cll, whether they were aware of it or not.

In my case a brother also has cll and a cousin NHL which is related.

Bubnjay1

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