Hi Everyone, I was diagnosed in January 2022 and have been on watch & wait since then. One of the questions I asked the Haematologist at the time was, is CLL hereditary. I have kept my diagnosis to just myself and my wife because I am asymptomatic and don’t see any point in worrying other people. I was informed that CLL is not hereditary and so I left it at that and have been carrying on my life as normal so I am fairly cool with the situation and haven’t really looked at the condition in any depth, happy to rely upon the information given professionally. I just happened to look up CLL on the internet & there is information there that contradicts the Haematologist information given to me. I would be grateful for any comments on this.
Thanks
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Mar2stor
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My CLL specialist at Dana Farber has directed me to tell my three children that they have double the risk of acquiring CLL due to my diagnosis.
Additionally, Dr. Ahn believes that my CLL could be related to my grandmother's multiple myeloma, which she died from. I resemble my grandmother more than any other family members and we are very much alike.
Thanks esn1967. It seems that there are varying views/opinions on this. Your response has been helpful & gives me some confidence to raise it on my next consultation.
Hi esn1967- I just wanted to say I met with Dr. Ahn for a consult (my daughter works at Harvard and wanted reassurance that my doc at Rocky Mountain Cancer Center was giving the best advice). She is an awesome doctor- covered a lot of ground in the consult, adjusted the explanations quickly to match where we had knowledge and where we did not. I will definitely go back for her in out if and when my SLL gets more complicated.
Mar2stor-it seems well established that statistically first degree relatives will have an increased risk of getting CLL/SLL. Even doubled it is a small overall lifetime risk, but I told my kids and especially my siblings so they would be aware.
About 10% of CLL is familial. We have accordingly members in this situation who have shared the higher incidence of CLL in their blood relatives. The risk is for a higher incidence of blood cancers, not necessarily CLL.ncbi.nlm.nih.gov/pmc/articl...
The US National Cancer Institute (NCI) within the National Institutes of Health (NIH), have been running a study into familial CLL for many years.
In the next stage of B lymphocyte maturity after the stage where CLL develops, B cells transform into memory B cells or plasma cells. Multiple myeloma is a plasma cell cancer and the characteristics of CLL cells are very similar to memory B cells, so that's a very close relationship.
In 2013, I was diagnosed with MGUS, Which is a precursor to Multiple Myeloma. As it turns out, it was CLL. It took another 8 years for doctors to diagnose me with CLL and rule out MGUS.
So, let's just say for example if my mom's sister has CLL as I do wouldn't our markers be the same if it runs in our family? Or could our markers be totally different? 🤔 My aunt was recently diagnosed and she didn't know any good doctors for CLL. When she asked me I told her to go to the doctor I use. She did and started the blood work BMB, Fish and X-rays. Then I requested that my aunt come in with me for my visit so we could determine if it was hereditary. The hematologist oncologist we use told us it was not hereditary due to the fact that we both have very different markers and progression patterns. I'm wondering if maybe she might have been incorrect.
Approximately 10% of individuals with CLL report a family history of CLL or a related lymphoproliferative disorder, and genetic predisposition is the best understood risk factor for CLL. Studies of familial CLL have suggested that the disease features are largely similar to sporadic CLL, although recent data suggest that familial CLL may more commonly show somatic hypermutation of the immunoglobulin heavy-chain variable region, suggesting a more indolent disease course.
So from this research, those with familial CLL are more likely to have IGHV mutated CLL.
This more recent 2022 Dana-Farber blog notes that the Dana-Farber study coordinator for familial CLL is Rayan Fardoun. rayan_fardoun@dfci.harvard....
Both lymphoma and CLL are relatively uncommon: the average person’s lifetime risk of developing CLL, for example, is 0.57%, according to the American Cancer Society. But for people with a first-degree relative (a parent, full sibling, or child) with CLL, the lifetime risk is approximately seven times higher, or about 4%.
Studies of patients’ family medical histories have reinforced these findings. In one study, Dana-Farber physician-researchers found that 10-20% of their patients with CLL or lymphoma had first- or second-degree relatives with these diseases. (Second-degree relatives include aunts, uncles, nephews, nieces, grandparents, and grandchildren.)
I am Ashkenazi with CLL and my sister also has CLL. Dana Farber is currently conducting a research on familial CLL, in which we are currently participants.
There is definitely blood cancer in my family. My uncle passed away from childhood leukemia at age 4. My twin sister passed from SLL with richters transformation to large b-cell lymphoma at age 43. I was diagnosed with SLL at age 65. Still in watch and wait at age 71.
Definitely hereditary for me. My Dad had it, his twin a red blood disorder & their mother had leukemia which I suspect could have been CLL since it was in the 50's & not sure they had as much info & research back then. My sister does not have CLL.
Although I don't know of any relative who has had CLL, on my father's side, my cousin had Hodgkin's Lymphoma at age 18, her father had leukemia, another cousin had an acute type of leukemia, and most recently, another cousin succumbed to multiple myeloma. Perhaps it's a coincidence, but I won't really know for sure.
When I first got diagnosed (2015) asked the same question as my paternal aunt not had blood cancer in the 60’s/70’s. The answer was similar but when my sister was diagnosed with CLL a few years after me I started to do my own research- for many years Doctors have said there is no familial link however research has been done in the US as it has become undeniable that it certainly can affect other family members.
I’m a bit of a CLL trailblazer in my family and not in a good way! My (maternal) cousin has it now and also my other sisters son. And another cousin has a blood cancer not CLL.
Recently I spoke to my sisters Haematologist and it was the first time they have agreed that there is a familial link in around 5% of cases -I wonder if this will rise over the next few years.
I once asked my own Heam if my daughter was more at risk of a cancer and his response was “well she’s 50% you” - Avery honest answer I thought.
Apologies for long reply- I’m just very interested in familial links!
My mother had Waldenstrom Macroglobulinemia and her mother also had some type of blood problem. So could be an hereditary link there.
Of course the difference is, we are so lucky now to have new treatments available, that would have , definitely extended both my mother’s and grandmother’s health and lifespan.
It is maybe selective from which parent passed the genes down. My oldest brother who resembles my mother does not have CLL, my brother older than me, but younger than the oldest had CLL, as do I, who mostly resembles my father. Neither of my parents were diagnosed with CLL.
For me the uncertainty also brings up socioemotional & ethical concerns about when to share my diagnosis w/my now 9-year old children. The sweetness & innocence of childhood is still w/them yet they are very smart, critical thinking people, I know them & They will undoubtedly make that connection in their brain, ask me, and then carry that sickness worry for me AND themselves.
This is why how & what to share & when is so important IMO, and it picks at me, one of the many subconscious anxieties that swell with this disease for me as I put that conversation off.
Because of covid and precautions we take, when most everyone around us in the community doesn’t want to know about covid, my husband feels we need to tell them ‘why’ (bc I have cll) so they are not blindsided later as teens. I agree when you teach children to always be truthful and come to you and not keep secrets, you yourself have to be true to that too.
(I also though think there is enough evidence that repeat covid infections are horrid for anyone’s body & our prior shares on that about inflammation & how that can be really tough on everyone’s bodies to fight other things which is why so many around us are sick back to back to back & many kids with VERY long coughs (so many of these kids have 6++ month coughs) now, is enough to support our choices around masks on school bus, stores, restaurant dining outside, etc… so we don’t need to ‘tell them ‘because of’ me…☹️)
We as many CLL’ers know, isn’t being the anomaly, the one w masks & doing what should be ‘understood’ as ‘reasonable’ safety precautions - but is now politically & socially vilified & demeaned - to limit the number of hits our family gets with Covid ‘enough’ for a child to bear? You have to be really brave to go against the mob mentality, stand tall when there is abdication of responsibility & pandering, ‘nothing to see here’, don’t ask don’t tell’, ‘why r u wearing a mask, it’s over’ with covid all around you … sorry, ranting ..
So, A CLL ‘heredity’ link, question, answer, ‘50 percent your parent’, ugh!) & reveal is a tough one with young vs. adult children for sure. Requires simple yet, thoughtful words, a script I have not figured yet..
Hi there- I also have a 9 year old! I made the decision to be open about my diagnosis since she could talk - mainly because I started treatment when she was around 18 months and the hospital is a very long way away. It has had its upsides in that we are very close and we talk about everything, she is very empathetic about anyone with a chronic disease or disability, the downside is that she does get very anxious every time I have a “CLL” medical appt - I make light of it and we get through it.
I don’t think there’s a right answer in when you tell them but they are smart enough to realise when things are going on that are not the norm so to speak.
My uncle (brother of my father) had CLL but lived to a good age. One of his daughters (my cousin), has CLL. She's in her 70s like me, though she's still on watch and wait and I've needed various treatments. Seems to be a slow form of CLL in my family.
I believe that for some people, exposure to certain chemicals can trigger CLL, but maybe only if they already had a genetic tendency to get it.
I'm 58 and being treated at Penn for CLL with Calquence. There are many in my family that have either had B Cell lymphoma, leukemia, melanoma or other cancers. Eleven years ago when my mom and cousin died of cancer, I had genetic testing done, but they didn't know as much as they know now. My doc has me scheduled in April for genetic testing and if the results show a genetic something, my adult children will have to be tested. So apparently they have cracked the code for something.
I have been in a familial blood cancer study at Mayo Clinic in Rochester, Minnesota since my CLL diagnosis in 2007. All my siblings and maternal first cousins have been invited to join. My maternal grandmother, two maternal aunts, and five maternal cousins (out of 14) had CLL.
I have CLL. My mom had it as well. My uncle had multiple myeloma. I really worry about my kids and grandsons. My son on law’s mom died of CLL to Richters, so I worry that my grandson has it on both sides. My mind goes to child hood leukemia. Has anyone ever heard a link there?
My mother died from Lymphoma, my step-father died from Multiple Myeloma, my nextdoor neighbor was diagnosed with CLL six months before I was...go figure.
I was diagnosed with CLL about a year ago. My hematologist told me at that time it was unknown how hereditable the condition is. My mother also had CLL, and two of my first cousins on her side have it. I don’t know if any or all of our genetic markers align, as CLL is such a highly individual condition.
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