I recall reading early on that CLL was thought to be possibly genetic, with 20 years younger in succeeding generations. I have two sons. I was diagnosed at 70. Ironically or not, one of my 4 uncles got leukemia around 90 (couldn't find out what kind), so I've wanted to follow the genetic implications if any. None of my direct relatives had it, to my knowledge (tho one grandmother died in her 30s and another in 60s, so who knows). Thanks in advance, folks, for any experience with this.
Curious -- family leukemia history anyone? - CLL Support
Curious -- family leukemia history anyone?
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Vlaminck
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Hi my Aunt my mother’s sister died of Leukemia. She was also a diabetic at the mo I’m pre diabetic !! Also she was left handed so am I!!I think I have a lot to thank her for!!! And I loved her so.Sheila in Oz
To date, there has never been a specific genetic cause to explain why CLL does commonly run in families. However, this link among family members is so common that sometimes it's called F-CLL, or Familial CLL.
That said, there are many people who don't see this connection among their family members, and it's not in any way a forgone conclusion that just because someone has CLL, their children or others in the family will too.
In my own family, there is a very strong connection among us for blood cancers, but doctors all agree that for our family this is more of an exception, rather than any kind of rule.
My father had Non-Hodgkin's Lymphoma. My older sister also has CLL, but happily she has been in remission for several years now. My older brother had Marginal Zone Lymphoma. He has undergone treatment and is currently doing very well. In terms of my own CLL diagnosis, I'm currently on Watch & Wait but I will be undergoing treatment soon.
My brother, who has had other cancers and also had a son who passed away from an aggressive childhood cancer, had extensive testing done to possibly find any genetic oddities or some kind of genetic link, but none were ever found.
Debbie
Thank you, Debbie, for sharing your knowledge as well as family history. And I am so sorry for what appears to be your familial cluster. Do you mind if I ask whether the family growing up lived near a nuclear plant, a farm where they used lots of pesticides, where water was contaminated, or any other such possible cause for such frequency? Good luck to all of you, and if here in the U.S., happy thanksgiving.
There are familial CLL studies and it is recognised that there is a higher risk of other blood cancers in impacted families, not just CLL. I'm sorry that you have such a family, but as you note, familial CLL doesn't mean that all blood relatives will develop a blood cancer, just that there is a higher risk of doing so, for what are, after all, still relatively rare cancers.
Neil
Thank you Neil.
Thank you, Assie. Given the responses on here, I have to think, well, of course there is a genetic connection for most! I don't know that I am in such a family -- 5 blood uncles and aunts and one uncle had some form leukemia at 90, and neither of my parents (both died before 90) and so far (but I am oldest) none of my sibling. But seeing, as I feel I am doing with responses on here, that there is clearly often a familial connection, would love to see them proceed to try to find the genetic areas, as a step toward cure/prevention.
My siblings and I were tested about 40 years ago for a genetic link from blood sample. They (University of Minnesota Hospital) found that three of us were possibilities. No one but me has it. I also am diabetic-only one again- which I recently read had a strong connection with the CLL. My g-grandfather had TB and died young. His daughter, my grandmother diagnosed CLL at 79. My dad at abt 40-not sure exactly-when he was diagnosed by small town doctor, and they gave him 6 months to live. He lived until 79 years. His brother got it later-in his 70's, and his daughter died at a medium age after being in remission for five years. One other cousin died at very young age of CLL. So although there is connection, they are different in how aggressive they are. I will try to post two pages of documents that tell of my dad and g-ma. Breast cancer is also in our family, seaming to be connected to dna. I get mad that I am the only picked on in our family..not that I want them sick, but always wondering, why me. I also only one to inherit my dad's very flat feet at birth.
HiI am interested in the article that you read about the diabetes connection to CLL. Can you give me that information. Also is it type I or type II? I have type II.
I think it was from Medical News Today out of the UK. I believe it was type 2 as that is what I have-30 years of it. There are other good articles regarding CLL nearly every day. I get it through email. There are also other sites that I googled today and saw more about how it affects treatment and less successful survival with diabetes. What I remember most about that article is that it talked about how sugar feeds cancers. It was specific about how the insulin and sugars both are affected and processed affecting the CLL. I wish I could find that article. My daughter has preached that to me for a few years. Is your Diabetes under good control?
I have type II diabetes and take Metformin daily. With Metformin my A1C is under 6. Now I have read in various places that Metformin slows CLL...maybe for us type II's it slows because our glucose is in normal range.
Your theory would be more plausible if CLL cells relied on glucose for their energy needs, but they rely on lipids. healthunlocked.com/cllsuppo...
The evidence behind metformin possibly slowing CLL progression was discussed 2 years ago here: healthunlocked.com/cllsuppo...
We also discussed this 5 years ago:
healthunlocked.com/cllsuppo...
With a quick look, I couldn't find any research updates on metformin and CLL from reputable sources in the last couple of years.
Neil
Thanks Neil. 😊
Thank you, Linda, and sorry you got the bad roll of dice but I'd be VERY interested in what test you had done at the U of Minnesota. I have never heard that they have any genetic test -- even for propensity.
Do you know how to post documents on here. I have five pages regarding my father and grandmother and family CLL 'defects' from the American Journal of Medicine 1978. I do not think that there was anything written in that report about me and siblings blood results and how they determine the likelihood of passing on the defect. They did talk of my dad's sisters having the associated breast cancers in the family. At that time his younger brother hadn't been diagnosed yet with CLL. I have to recall things that my mom told us and she told us about the results of our blood test, but that the U of M would not tell which 3 of her six children were at risk of the disease.
This site only supports the "attachment" of image files for viewing. If you want to share other document types, you can do this by saving them to a file sharing service like Dropbox and then sharing the public link.
Neil
thanks Neil.. I guess it isn't that important to share. There are a lot of words in it that I have no idea what they mean. Tho, It might be interesting to people who have family with so many shaken by this disease and can understand the chemistry lingo.
Hi - I was diagnosed 6 months ago (incidental finding) moderately symptomatic aged 61. I now find out that my brother (seven years older) was diagnosed five years ago and has been on W&W (also moderately symptomatic. My sister died at 63 (hitherto apparently always fit & active) of a sudden fulminant meningococcal infection that prompted a cytokine storm. She died within hours of diagnosis. Obviously at the time of death her lymphocytes were off the scale but my CLL specialist suspects that she also had CLL which made her vulnerable to a virus most people carry with them from childhood. So that’s three out of five siblings with CLL but nothing that I can ascertain from either side re previous generations and Leukaemia; - perhaps they just didn’t live long enough nor were as frequently tested as my generation?
Thank you, Petroc, and so sorry to hear of all the CLL cases. As I asked Debbie just previously, and if you don't mind, did your family possibly live near a nuclear plant, a farm where a lot of pesticides/herbicides were used, place with contaminated water, or some such other possible reason for this cluster? Especially since your older relatives didn't have it, would seem appropriate to look elsewhere than genetics, I would think.
You have got me thinking. I haven’t considered environmental factors. We lived near Springfield Nuclear Plant near Preston - which was part of the infamous Sellafield reprocessing plant many miles away. It was considered low level as opposed to Sellafield. The other consideration is that as children up until the age of 18 we all lived on a very, very busy dual carriageway in Preston, (so bad that the first motorway ever built in the UK was the M6 Preston by-pass. Standing traffic idling at the nearby traffic lights (about 50 metres away) at the crossroads of one of the busiest major junctions in the city was just a ‘natural’ backdrop to our daily existences - and this was years before unleaded petrol was phased-in.
You may well be on to something as I read about a possible connection between benzene and leukaemias in general, (not specifically CLL) but never made the connection!
Wow, of course it doesn't change anything healthwise for better or worse, but it would certainly seem worth looking into -- nuclear plant, the reprocessing plant AND the traffic location -- wonder if other families also have leukemias (or other cancers or medical problems) at a higher than normal rate? How about rate around nuclear plant/recycling plant? If you do find a connection, wonder if there could be special studies or special treatments for those causes (or, of course, possible financial help)? Plus help enlighten other before they get it? Again, best of luck, Petroc.
Historically I know there was a cluster round Sellafield - at the time it was the world’s worst nuclear accident and to this days areas are still heavily contaminated. Should be easily found on Google if interested. As for my family and the causes of death in my immediate area you’ve made me think. I’ll make some enquiries with the local health authority re death register & causes of death.
It's only in recent decades that exposure to nuclear radiation has been recognised as a risk factor for the development of CLL, following long term studies from the Chernobyl nuclear reactor disaster. Radioactive strontium and barium can be incorporated into our bones as these elements are similar to calcium. Radioactive decay can then damage bone marrow stem cells, increasing the risk of leukaemia developing, but it's more likely to be another type than CLL.
Neil
Thanks for the additional in-depth chat about the association of nuclear plant risk and CLL. I believe it’s real.
Having worked at the Rocky Flats nuclear plutonium bomb trigger plant (during its final demo/cleanup years) often wondered if that had anything to do with getting CLL? Though I was dx 20 years after that plant was dismantled (crazily built just outside of metropolis Denver!).
To make situation worse, we live a few miles away (downwind) of that plant for over 30 years, many years while it was operating. Many long-time neighbors with various cancers just happen to live on our neighborhood street too.
Coincidence?
thank you for that background. If unusually high incidence in neighborhood, definitely might be worth pursuing, with neighbors, etc., ala Erin Brokowitz?. I am sure the nuke folks always told you there was no danger at all.
Yeah we all got a settlement check from a civil suit. Learned of danger long after we had lived where we are unfortunately.
Could of, should of, never bought house where we did. I went to work at the plant for a good cause, working for EPA oversighting the cleanup/demo of the plant n it’s site … now knowing that wasn’t a good decision on my part just like house buying. I do own responsibility and consequences for my poor decisions/actions.
My message to others, don’t do as I did !
I was diagnosed first 33 years ago, then my Mom several years later then came my younger brother just 5 years ago and the last one was a young niece of mine. I have had treatment off and on for 17 years, my Mom no treatment and the brother and niece both had very short Watch and Wait and both are on Imbruvica.
HAPPY THANKSGIVING TO YOU!!! 🦃🦃🦃
Panz 🙏☘️🙂💕
Thank you, Panz, and good for you, 33 years! Yours is the third response that sounds to me like a little family cluster. Yours over three generations. Do you know if any grandparents had anything like this or great uncles, aunts, etc, or has it been just basically your nuclear family. Whatever, best of luck to you and all your family and, yes, Happy Thanksgiving! Debbie
I lost an Uncle to Leukemia. He was in his 50's or 60's. My oncologist said probably another Leukemia not related. Our family thought at the time it was from his pool cleaning company's exposure to chemicals. I am right-handed.
My oncologist says "no," but my dad had lymphoma (died of pneumonia during chemo in 1984), and his mom had CLL (like me), but died of a stroke in the early 60's.
My mums sister died of Non-hodgkins on the late '60's
My mom had CLL as did my great aunt. I was diagnosed with it as 60.
Sorry. Surely sounds to me genetic, though they haven't discovered the genes involved.
I did read once when I was first diagnosed 14 odd years ago now that children of Japanese prisoners of War were more likely to contract blood cancer.. Dad was a pow for 4 years.. But so far none of my 4 siblings has it
Interesting. Assume this would be from environmental factors affecting genes. Good luck to you and family in escaping this.
hopefully his body had recovered by the time the rest were born ..I was the eldest
Hello, I was diagnosed this year at 62 and my older brother (67 )was also diagnosed at 62. I was told it was not a cancer gene that was inherited, but also not uncommon to see in siblings.
Doctor notwithstanding, makes one consider that they just haven't discovered the cancer gene rather than that it doesn't exist. On the other hand, particularly where only one generation gets it, makes me wonder about childhood environmental causes. Good luck to you and your brother.
My father died of non Hodgkin's lymphoma 20years ago.
Hi, my uncle has SLL. His blood cancer was found at a much older age than me, but I had a booklet I had got for him from one of the charities and was going to give it to him the next time I saw him, but then it was useful for me! When I asked about the chances of my daughter having more chance of getting blood cancer in future my consultant said there wasn't really any genetic connection. However, I think he was probably trying to put my mind at rest, and actually meant that there are probably multiple genes involved as well as environmental factors/viruses etc.
I agree -- probably why cause possibly unnecessary worry.
My mother died of AML, (acute myeloid leukaemia) at the age of 62 in 1985. No exposure that we can determine from ionising radiation, industrial chemicals or other possible causative factors. 6 weeks from diagnosis to death. My CLL diagnosis was at 69. Again no exposure to radiation - at least, not much; one day trip round a French nuclear power station, though we did love the X-ray machines in shoe shops as kids, and only transient exposure to industrial chemicals such as cellulose thinners, MEK, acetone, carbon tetrachloride, epoxy and polyester resins, but all only at a DIY level except for one summer vac when I worked as a semi-skilled sprayer in a metal racking factory so a daily exposure to VOCs and trichloroethylene. (we degreased the steel sections in the trike-tank before spraying). I only did the base frames and that mostly outdoors on decent days. I never worked in the spray booth where the steel shelves were done on a moving conveyor but the sprayer there had a full respirator set on external, filtered air. We both had to drink a pint (580ml) of (issued) milk every day. I'm not sure now what the milk was supposed to counteract.
Interesting. My working theory is that when there are different generations, probably genetic -- or at least genetic weakness, but your exposures may have made it just coincidental. Either way, good luck. Wonder why the milk? To counteract something, strontium? Guess you got plenty of calcium!
My mother was diagnosed with cll in her 60s and I was diagnosed at 60. She came from a huge family who scattered across the country, so I don’t know their medical histories, and her mother died young from complications of surgery. My doctor said there was no known familial factor, but IMO too many people here have relatives with blood disorders to ignore the possibility.
Both my GP and my Oncologist think so. My mother died from non Hodgkins Lymphoma at 72 yrs. old, my father died from multiple myeloma at 83 yrs. old. My family doctor said........you couldn't miss could you? And my Oncologist said....very possibly inherited. I just hope I don't pass this along to my daughter. I was first diagnosed at 57 yrs. old but couldn't get treatment until I was 65 and had health insurance. It's out of the question to afford treatment for cancer out of pocket. (unless you're a millionaire). BUT, I'm still here at 78.
Good for you. I'm with you. Although I don't have known other family, except an uncle at age 90, I'm the oldest of my siblings. So thoughts go to sons. Hopefully by the time they are older, there will be a cure!
I pray there will be a cure someday. There are many more treatments and clinical trials but I don't know of a cure as yet.
Myself and my two sisters all have cll. My two brothers are o.k. Regards Y
My mother was diagnosed at age 65 with CLL and did not need treatment for 15 years and passed away at age 81. My brother, my only sibling, was diagnosed at age 58 with CLL, was treated with Chlorambicil, developed bladder cancer and passed away from bladder cancer at age 69. My mother’s brother passed away at age 53 from hairy cell leukemia. Interesting to note, there were no environmental factors involved. I grew up in an extremely healthy home with only pure, clean eating, nothing in a can or frozen. It has been said that it is no uncommon in Ashkenazi Jewish community.
Interesting -- given that mother had it also, I would tend to assume genetic over environmental anyway. Never heard about Ashkenazi Jewish being particularly prone, just knew about breast cancer. Wonder what studies there have been done. Sorry about brother. Do I assume you have might not have it also?
My paternal aunt had CLL, not sure when diagnosed, her son my cousin has been recently diagnosed in his late 50's and I was also diagnosed aged 57. No others that I'm aware of
I am familial. My brother had SLL and other family members had CLL, lymphoma and B-cell lymphoma.
Virginia
Thanks for info, Virginia; no question from these responses that there is a genetic connection for so many -- so hope studies, like that in Dana Farber, will go further with this and start looking for genes or genetic areas.
Hey Vlamick
I guess I'm the Poster Boy for Familial Heredity And CLL
I was diagnosed in April 2018 at age 71, my Father died of a complication of CLL at age 71, his Mother had CLL and died at age 93, and her Father had CLL and I'm not certain of his age but remember he looked "real old" to a little kid (me).
I actually got in as a patient of the renowned Dr Jennifer Brown at Dana Farber, after sending her an email about my family history. I wanted to become her patient and had read her Bio (stone cold incredible Bio), and almost invisible in the five or six pages of accomplishments etc was a simple sentence: "She has a personal interest in family heredity and CLL". So Jennifer Brown was interested in seeing me, and now I see her every six months on W&W. Dr Brown has a separate research study going on by the way on family heredity and CLL, so I purposely mentioned all of this for any of you who might be willing to be part of that research study.
From what I once read on some other web site, the familial occurrence of CLL is only ten percent of all cases.
Because of my family history, I sort of was waiting for my white count to start climbing. When it was regularly hovering around 13000 in 2014 I told my Primary that perhaps I should be tested for CLL. He first said that the higher than average number could be due to many things including inflammation. I mentioned my Father having had the illness and he poo poo'd it and said it doesn't run in families. Then after another pneumonia in January 2016 my count reached 18,000, and he said that I had just recovered from Pneumonia. I decided enough was enough and with insurance that doesnt need referrals I simply got an appointment at Lynn Cancer Center in Boca Raton FL. The Hematologist was surprised to see me, since I wasn't a diagnosed patient, and I explained my history. She ran initial tests and I was borderline with 5000 of the monoclonal B Cells. She decided to follow me, and in April 2018 I finally got the actual designation. I sort of expected it back in 2014, and then was quite certain in 2016. Oh well, so I'm number 4.
Carl
Wow, Carl, you are a poster boy! But so glad to hear Dana Farber looking into this very issue. Smart of you to go there. Therein may be an ability to predict, or alter, to cure, so many possibilities if they find the genetic areas!
You are right on with your thoughts. When I was trying to separate what I viewed as the top three Specialists in the Country, my Brother Matt, who is a brilliant physician, reviewed them and suggested my current Specialist. He felt she leads the Nation in Genetic research in the illness, and said "if there ever is a cure it will be genetic". I'm sure I'd have been in great hands with any of the top three, and likely with many other top Specialists out there, but I followed my Brother's advice.
Carl
Hi Vlaminck, I was diagnosed with cll in 2016. I was diagnosed with a low IgM antibody about nine years earlier. One of my sons was also diagnosed with a low IgM antibody in his early twenties. Our GP said we were both probably born with it though he doesn’t know that. When I looked on line it said people born with a low IgM may develop leukemia in later life. I don’t know if this is true. Hopefully, my son won’t get it touch wood! However, I wonder if anybody else with cll already had a low IgM? Of course, you probably wouldn’t know. Just food for thought.
Angela
Interesting. I don't even know my igm so this is totally knew to me -- wonder if it's true that early Igm leads to CLL. However, I always, as high as I can remember as an adult, had a high albumin/globulin ratio and was always told not to worry about it. Things that like can make one wonder. -- perhaps this was a sign?
Thank you for your reply. I’ve just googled high albumin/globulin ratio and it does say it can be linked to leukaemia amongst other things. I can’t send it to you but if you google it you will see all sorts of things. The more you look into it the more interesting it gets! Also I have lived next door to an electricity substation for 39 years. Apart from me three others have lived next door to it and got cancer as well, two of which have had leukaemia.
Yes, I did see that, which makes me think back to all the times I was told no problem, move along. On the other hand, what could have been done if anything, probably nothing. It is something perhaps people who have families with this might look for as an early sign of susceptibility?
With respect to electricity substations and leukaemia risk, there are two possible causes that have come under suspicion; Electromagnetic Fields and Polychlorinated Biphenyls (PCBs), with the latter a contaminant in oils used in transformers and capacitors. This was more of a problem decades ago, before tougher environmental standards came in place. Per these two papers, there doesn't appear to be an increased risk for NHL of which CLL is the most common adult type:-
Electromagnetic Fields and Cancer
cancer.gov/about-cancer/cau...
"No mechanism by which ELF-EMFs or radiofrequency radiation could cause cancer has been identified. Unlike high-energy (ionizing) radiation, EMFs in the non-ionizing part of the electromagnetic spectrum cannot damage DNA or cells directly."
:
"More recent studies, including some that considered exposure measurements as well as job titles, have generally not shown an increasing risk of leukemia, brain tumors, or female breast cancer with increasing exposure to magnetic fields at work."
Most of the concern has been in respect to childhood leukaemia, where "No consistent evidence for an association between any source of non-ionizing EMF and cancer has been found."
Do polychlorinated biphenyls cause cancer? A systematic review and meta-analysis of epidemiological studies on risk of cutaneous melanoma and non-Hodgkin lymphoma (2017)
This meta-analysis was on occupationally exposed workers.
pubmed.ncbi.nlm.nih.gov/285...
"In conclusion, these findings do not provide a strong evidence that PCB exposure can increase the risk of melanoma and NHL in humans."
Neil
I worked as an iron worker helper at a peaking plant substation on a small crew back in the late 70s to help pay my way thru college. Union job wages were really good. I recall they had a block of oil transformers with PCBs and the switchyard had other electrical devices with PCBs in them too. We never drained any of them during the time I worked at the substation.
We were always way more concerned with proper lockout of the energized lines than PCBs. Energized lines and welding fumes probably not a good thing either ….
Geeze … but many decades ago doubtful my couple years around that lead to CLL. Hopefully not for the crew.
Thank you Neil. I shall read with interest.
My father died of multiple myeloma and an uncle on mother's side died of leukaemia so I may have had a genetic predisposition. None of my brothers have leukaemia, so have wondered why me. However, I worked for 20 years on top of a hot spot for radon gas and many of my work colleagues in the same block as me have had some type of cancer. Apparently the radon gas reading was so high, we weren't told.!! I have read a number of articles (American) about the link between radon gas and CLL and so naturally it has made me wonder.
Our body naturally makes 10,000 DNA 'mistakes' every day but a good healthy body can handle that. Being type 2 diabetic (we share a family gene) and radon gas seeping under the door, may just have weakened my ability to deal with the 'mistakes'.
Thanks for sharing your story. It really angers me to hear a company putting workers at risk and not telling them about it. At least best of luck to you.
Definitely for me. My Dad, his twin & their mom had it. But my sister doesn't.
I don't think it is truly known. My mother had Waldentrom's (sp). I found out my father had A leukemia before he dies, not treated as he was in his '90's & not necessary. Think it is a roll-of-the-dice with family.
I have 2 cousins that have/had blood cancers. One with multiple myeloma, unfortunately passed away after 5 years. His younger brother, my cousin just diagnosed 2 years ago with cll. My mother was diagnosed with polycythemia vera. Not exactly sure at what age, could have been in her 50’s.Happy Thanksgiving!
Thanks for sharing. And happy thanksigiving!
I was diagnosed at 48 with CLL and my mom was diagnosed with Waldenstrom Lymphoma at 74. Both a type of Lymphoma. We were both being treated at the same time. Kind of strange.
Sheryl
I asked my cousins when I was first diagnosed but no one had CLL or other blood diseases. Other kinds of cancer, yes. My 3 adult children fear as both parents have had blood cancer, 3 of the 4 grandparents had cancer..my oldest says she is doomed but I tell her not to focus on that now.
Both my parent passed with Non-Hogskins Lymphoma, ( I am CLL on W & W for 1 year), one first cousin living with Multiple Myeloma, and one first cousin deceased with Myeloma. We all grew up on a farm. I do know my father used strong pesticides and I lived with a 24/27 smoker for 21 years. So, I don't what to read into my family history.
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