Morning all, just wanted to ask if there is anyone who is in the same boat and can offer any explanation apart from " it's the luck of the draw" .... I was diagnosed with CLL at 39, had FCR sailed through it, was in remission for 18 months and then it came back with a vengeance !!! R-chop for 2 cycles then stopped working as lymph nodes came back on neck, lost my hair !!! ... Next Bendamustine and Rituximab was tried, again same result, stopped working after 2nd cycle... I am now fortunate to be on ibrutinib, 3 months in and I'm doing great !!! ... But !!! The reason I'm asking about the "luck of the draw " is that in the past 4 years I have lost my sister at 42 to breast cancer and my Mum in January this year to bowel cancer!! ... Even though my consultant tells me it's not genetic ... I often wonder !!! ... So I just wanted to know if any one out there had had a similar " luck of the draw " ... Jan x
The Big C....: Morning all, just wanted to ask... - CLL Support
The Big C....
Aw Jan that's terrible! I am the youngest of five and none of my siblings have cancer. I thought I was young at 47 getting CLL but 39...well. I am also on Ibrutinib but as first line treatment. So glad it is working for you as it is for me.
BW Jacqueline
Jan, you and your family have certainly done poorly with the 'lottery of luck' and it is no wonder that you are wondering if there is something more than random bad fortune involved. Unfortunately, I doubt you'll ever get a satisfactory answer. Because the incidence of cancer has a significant random component to it, you can get clusters of cancers in a family, workplace, location, etc, without any underlying causative effect. You can experience this phenomenon just by tossing a coin or rolling dice. You can see unusual patterns (e.g. a large number of heads in a row or even head, tail, head, tail, head, tail...), but over a long enough run, the statistically predicted results should occur unless the coin/dice are loaded.
With cancer, there could be some genetic or environmental basis - perhaps a parent/grandparent worked with mutagenic chemicals or experienced radiation damage that was inherited, but what can you do other than encourage your children and relatives to be more vigilant?
Good to hear that you are doing well on Ibrutinib; it's about time you had a better draw!
Neil
Jan.. were you diagnosed with a Richter's transformation?
Glad to hear Imbruvica (ibrutinib) is doing well...
~chris
Hi Chris, it's been a roller coaster ride over the past 12 months... After my lymph nodes on my neck came up at an alarming pace I had a biopsy on my neck and was told it had transformed into a higher grade, as you can imagine I was devastated, I was put on R-Chop chemo, but unfortunately after the 2nd cycle my lymph nodes started to swell up again after rapidly going down after the 1st cycle, another biopsy was done as well as a PET scan, under a different consultant and I was told that I was bordering on a transformation but it was still CLL although it was behaving in an aggresive way ... I was relieved to say the least.... So that's me so far !!! ... I'm on Ibrutinib for now, but a transplant is still on the cards in the near future ... So I will keep you updated, Thank you for your support, it's reasuring to know that there is a community you can turn to.... Love Jan x
Wow Jan you certainly haven't had much luck have you. I can't really comment on the hereditary or genetic idea as I am the first I am aware of within my family who has contracted CLL, I did lose an uncle on my mother’s side to Prostrate cancer and his sister (now in her 80's) has just been treated for AML but that’s it, nothing on my father’s side. I am blaming mine for my exposure to chemicals, in particular wartime mustard gas, during my service in the RAF.
Wishing you well Jan and hope this round of treatment is successful.
Kirk
I blamed mine for not drinking enough beer. I thought if I had then I could have drowned the mutation in alcohol. *Sigh* I can't turn back time though and be a homeless, cancer free, drunk which is what I wanted to do in life. But no, I had to become a computer programmer and get addicted to coffee.
I have thought many times that what if this thing I have can be passed down? Does this mean my children and grandchildren have a gene that will cause this disease? I try not to think about it too much and I never bring this up. Right now, we don't know and it could be environmental. Or simply not drinking enough beer.
Hi Jan, my husband was diagnosed with MCL a month before his sister died of Lymphoma, we too were assured it was 'coincidence' but it makes you wonder. That was three years ago, he has had three lots of Chemo, all stopped early as 'not 'working', and had a violent reaction to Rituximab. He started Ibrutinib six weeks ago had the results of a CT scan yesterday and good news his tumours, lymph nodes and spleen have all reduced in size. You are so young to have this we wish you all the very best and sincerely hope the Ibrutinib continues to work for you. Stay positive.
My husband was diagnosed with CLL at 46. Was also told no reason for it however there has been leukemia on both his mother's side of the family and his father's side (albeit not CLL).
He's also on Ibrutinib and has been advised to have a stem cell transplant once his counts come into normal range. Are you also going to have a transplant?
Thank you to everyone for your messages, it means so much, and thank you also for sharing your experiences... I am on ibrutinib for now but a transplant is needed in the near future.
I will continue to keep you updated and read all of your posts, as I find that there is always someone on here who will have an answer and a kind word as we are all going through the same thing... Best wishes to you all .... And as my sister used to say !! " Keep Trucking " xx
Hi Janet
I think we often wonder about family links and it is most probably luck of the draw, but from the same family line I have lost a cousin with cervical cancer, her brother survived stomach cancer and has non hodgkins lymphoma, and my brother and I both have Cll.
I wish a better dice had been rolled for you and come up lucky.
Wishing you and flutterby successful treatments.
Best wishes
Bubnjay
Sorry to hear what a bad time you have had and at such a young age. I can't comment on the genetics although my mother and I both had breast cancer. Unfortunately my mastectomy was so long ago the records don't show what type the cancer was. My mum was 67 when she died, but if was only 36 when I had my op.so it could have been two different types. I am now 72 and was diagnosed with CLL in 2009. I won't go into all the different treatments I have had since then but Ibrutinib is now working well ( in my 5th month). Apparently there is no connection between the two cancers. I sometimes think I must be particularly susceptible to getting cancer, but I have survived breast cancer for a long time and hopefully will survive CLL for a while yet. You are young and I am sure this will help you overcome the CLL. ( and lucky enough to be able to have a transplant eventually). Please keep positive !
( 'I' not 'if' - my I pad won't let me go back and correct)
Hi Janet (with the lovely beaming smile),
Oh I have no explanations as to why some of us suffer and stumble from tragedy to tragedy whilst others have a charmed life but you've had more pain that anyone should have to suffer at a time when you're fighting your own health battles.
There's no cancer in my family (blood line) that I can recall but I've lost so many people through other conditions and my father died relatively young. Someone once said to me that I didn't get curved balls thrown at me, I got Exocet missiles!
Sending the most massive support and best wishes to you for the future. I'm delighted Ibrutinib is working and hope a successful transplant becomes possible.
I can't even imagine what you've been through emotionally Jan but I hope you've had people supporting you through it. Sending hugs,
Newdawn x
Isambard...my ipad won't let me correct either. Neil has reported the fault to HU.
I think there's both a genetic propensity and an environmental element for CLL.
Chaya on CLL Topics said that in the USA there are hotspots for CLL in Minnesota and in NYC. Minnesota is the largest agricultural state where they use high amounts of pesticides and in NYC the CLL clusters are in the Ashkenazi Jewish community who originated in North Eastern Europe where there are CLL clusters. These communities tended to marry within their own so any gene mutation would be duplicated. Also NYC residents regularly use pesticides in their apartments so there could also be an environmental reason.
In my own case I was exposed to a very nasty organophosphate pesticide and then went on to develop CLL. I probably have genetic reasons as well as my mother has CLL and my sister had AML. My maternal grandparents were not Ashkenazi but they were first cousins from N E Europe. There are very few cases of CLL in Asian countries.
I would be really interested to know if anyone knows of any info about clusters of CLL both in the UK and globally.
I just came across an interesting study, on famillial CLL, using the Scandanavian cancer databases, since they have been recording cases for a long time, they have the best depth of CLL family information...
It might be of interest...full paper here... it indicates some of the problems involved in population studies...
ncbi.nlm.nih.gov/pmc/articl...
Also, the paper on Genes and the Environment is good on F-CLL
asheducationbook.hematology...
There is a Euopean study called EPILYMPH that looks at occupational exposure to pesticides, and I recall it found that there was an increased relative risk of CLL associated to organophosphates...
Thanks for these very interesting articles. The Epilymph study of pesticides and CLL seems to prove a fairly definite causal link.
These studies never attribute causality, it is always couched in the terms of increase relative risk etc...
A recent study of workers at Chernobyl found...
'Although an elevated radiation-related risk of leukemia was not surprising, given the level of exposure among many of these workers, what did surprise Zablotska and her colleagues was the elevated risk of chronic lymphocytic leukemia (CLL), which was similar in size to the risk estimated for non-CLL leukemia.'
Hi Janet,
I am so sorry for all your losses. Having been through so much, your positive outlook is to be admired! My mom was diagnosed with CLL in her mid-80’s and I in my mid-50’s last year. My mom’s father had a form of lymphoma, although I don’t know his exact diagnosis, as I was only 8 when he passed away and my mom does not remember. When I told my CLL specialist, he said it may just be a coincidence and not a familial link. I however really doubt that. I am convinced all our diagnoses are related in some fashion.
I want to join everyone else in wishing you continued success with the Ibrutinib as well as with the transplant should it come to that. Take good care and sending a hug from the USA.
NVP
I too have a lot of prevalence of cancer in my father's side of the family. He died from pancreatic cancer and my brother from prostrate cancer, my niece has recovered from cervical cancer and now has two beautiful boys. I also have uncles from my mum's side of the family who have had bowel cancer but all cancers have been different. I had breast cancer which has been successfully treated and am now in the early stages of CLL.
I do mull over the susceptibility in my family and have talked it through with consultants. They feel there is little connection. One commented that if I had been diagnosed with CLL before breast cancer they may consider a link but as it was the other way round we will never know.
Since having breast cancer I am involved in some research which is on going and that seems to be looking at cancer links, amongst other things.
Hope your journey now eases and your health stabilises and all the best for the future. I have early CLL but don't find it an easy journey.
it seems life's hardships are never distributed evenly, but you have definitely been given far more than your fair share. (someone once told me that we are only given as much as we can cope with), but as yet I am struggling to agree.
CLL alone is more than enough for anyone to cope with.
No one in my family has CLL and I am told by my consultant that I will never know why I have it. My view is, that hopefully, me having CLL means another person does NOT have CLL.
As for cancer running in families, well it could also be said about Diabetes, high blood pressure, heart disease and many other illnesses, and the answer will be the same, NOBODY knows why family A are healthy but family B has been given family A's share of illness.
Luck, Fate, Destiny call it what you like, but something greater than us mere mortals is dishing out all kinds of illnesses and conditions that unfortunately, is done in an unfair, unkind and cruel way.
So pleased to hear you are now responding to treatment and that things now look a little more positive.
Lots of support, loads of friendly advice, suggestions and recommendations, but above all, buckets full of understanding, empathy and cyber hugs are here for you whenever you need it.
The fantastic CLL family, which I chose to be part of after my dx, is a family where everyone is ill, but that is where we get our strength from.
best wishes and a massive cyber hug
Anne x
Dear Jan, I hope that you have a supportive family or partner to help you throught these tough times. My aunt had CLL in the sixties no treatment then she was about my age 60-70. My dad died of lung cancer after being gassed in the trenches in ww1.
Thinking back in my life I know that I was in Europe when Chernobyl the atomic power station blew and the winds blew over a lot of Northern Europe. I often wondered if that was the cause of mutation?
I'm struggling at the mo with tender lymph nodes mainly neck and abdomen. I didn't have a dry good time on chemo with lots of side effects. So hoping the non chemo monoclonals will suit me when or if I need more treatment. It's good to hear that your doing well.
Sheila from Oz
Sorry re typos can't ammend on iPad
Hi Jan,
I love your smile. I just wanted to get that out first. 
My doctor told me they simply don't know what causes it yet. My family (going back as far a great grandparents) has been cancer free all their lives with the exception of my father who the army determined was caused by Agent Orange dumped on his platoon in Vietnam in full strength, undiluted. That was after I was born so it wasn't passed on to me.
I figure that there is an alien force at work. These orange and lavender people from the planet Tishtosh are playing a board game. There are seven bajillion pieces on the board and they move them around. Some people land on the square that says, "Car crash, roll dice for fatality chance." There is a square that says, "Contract CLL - Go directly to chemo. Do not pass Mars." When a piece lands on a square, it is then examined to find out who that piece belongs to on Earth and then they hit us with the Game Induction Ray.
At least that's my hypothesis. My doctor has since sent me to see a psychiatrist.
Seriously for a moment, they may find out sometime in the future what the cause is and I've thought about it and decided that it won't make any difference now. I have it and it is unpredictable. When I'm not suffering the side-effects of therapy (I'm on the Bendamustine/Rituxan version) I'm doing everything I can that I enjoy. My doctor says that I'm going to live well into my eighties. I don't expect to since he also said it would be many years before I needed treatment and I was diagnosed not quite two years ago. It's simply unpredictable.
I'm not down or depressed about it. It's a part of life and I've gone through the five stages and have accepted it. I am simply noticing how blue the sky is, the scent of a candle, watching Frozen with my grandchildren and making them laugh. The legacy I hope to leave is, "Yes he was a bit of a loon but the man knew how to live!"
Hi Jan,
Since you and your family have experienced a mixed bag of cancers ranging from solid to hematologic it may suggest an inherited genetic vulnerability to the genes that protect and pass judgement on defective cells. All cancer is inherently a failure of immune function but immune function can be overwhelmed or disarmed by exposures to carcinogens or radiation as examples. I am not sure how far the efforts at genomic sequencing are progressing in every country but this effort will provide the puzzle pieces to be make sense of DNA damage when analysis catches up to the amount of data sequencing is producing.
I suspect that some people, either through inheritance or encounter with cancer causing agents, have a global weakness for DNA damage patterns that can lead to multiple cancers in one individual or in a family.
Someday I could envision getting a screening and "fixing" immune dysfunction before cancers have a chance to be established.
Curiously, my family on both sides are remarkably free of any cancer, solid or hematologic with the exception of my dad who was a 3-4 pack a day smoker and worked with herbicides and pesticides most of his working life. He also managed to get to 82 before diagnosed with Bladder cancer and lived to 87 without treatment. I am the first to get a blood cancer presumed to be from exposure to Agent Orange in the Viet-Nam war.
If I were you I would ask about NGS (Next Generation Sequencing) which may provide a map of informational "dots" that could in the future lead you to best outcome treatments, maybe even preventive treatments. Your previous drug failures, should in theory, be predictable given enough information and proper interpretation.
May the CLL bear you dance with be long in hibernation with Ibrutinib. Ibru is working well for me.
WWW
Hi Jan, you've really gone through it in the last few years & I hope your new treatment really works for you.
As one recently diagnosed with CLL at the ripe old age of 66 the genetic issue was one I discussed with my Doctor, because I lost my brother 19 months ago after his 2nd operation on a brain tumour caused a complication that led to a him getting pneumonia which they couldn't deal with & my mother had died of cancer of the pancreas, although she was we;; in her 80's when she died & she never actually new she had it. Like you the Doctor didn't believe there was any connection or anything to suggest there might be something being passed onto my children.
There are some cancers I believe are genetic/hereditary like Prostrate, because I had a good friend who suddenly died of this 4 years ago & I know they found something in his genetics to suggest they needed to test his brother & he apparently had what they were looking for & he was due to go to Research Hospital in Cambridge for further tests. How these turned out I'm not sure, because I haven't seen him since. I believe there are other cancers that are similar & can be hereditary, but it seems the ones you & I have don't come into this category.
Stay strong & positive & hopefully you get a positive result.
Hi Jan
I was diagnosed in 2009 with CLL, and underwent 6 months of FCR-M and have been in remission up until now (enlarged Lymph nodes) and am currently on watch and wait.
My family history, I am youngest of 4 boys.
My father died aged 60 CLL
My eldest brother died age 60 CLL and lung cancer
My middle brothers are twins
One died age 39 with brain tumor
His twin still alive (70), had bladder cancer (now removed), but has recently been diagnosed with Non Hodgkins Lymphoma
So do I think Mr C runs in families ? don't think you need an answer to that
keep well
Ray
Hi Jan
I was diagnosed in 2009 with CLL, and underwent 6 months of FCR-M and have been in remission up until now (enlarged Lymph nodes) and am currently on watch and wait.
My family history, I am youngest of 4 boys.
My father died aged 60 CLL
My eldest brother died age 60 CLL and lung cancer
My middle brothers are twins
One died age 39 with brain tumor
His twin still alive (70), had bladder cancer (now removed), but has recently been diagnosed with Non Hodgkins Lymphoma
So do I think Mr C runs in families ? don't think you need an answer to that
keep well
Ray
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