Is CLL more common among Ashkenazi Jewish people?
One of our members has asked me to back up my assertion in a previous article that a surprisingly high percentage of Ashkenazi Jewish people are vulnerable to CLL. She is my kind of a member, good for her! I hope none of you take things for granted just because someone on the internet said it was so. Challenge your sources to put their money where their mouth is, every chance you get.
I dug around a bit and here is what I came up with by way of a credible journal article linking CLL and Ashkenazi Jewish ethnicity. The paper is from Israel, where some of the cutting edge research is being done. The abstract and my discussion are below; you can read the full text of the article by clicking on the link provided.
Leukemia. 1998 Oct;12(10):1612-7.
Epidemiology and ethnic aspects of B cell chronic lymphocytic leukemia in Israel.
Shvidel L, Shtarlid M, Klepfish A, Sigler E, Berrebi A.
Hematology Institute, Kaplan Medical Center, Hebrew University, Faculty of Medicine, Rehovot, Israel.
Chronic lymphocytic leukemia (CLL) represents 30% of all leukemias in Caucasians. In East Europe and USA the disease incidence is high while in Asia and Africa CLL is rare. The present study deals with 302 cases of B cell CLL and related disorders; 207 patients originating from Europe and America (Ashkenazi Jews) and 95 descendants from Asia, The Mediterranean or Africa (Sephardic Jews). The patients were recruited during 1975-1996 in a single center covering the Hashfela region — a Southern area of Israel with a current population of 430000 inhabitants. Incidence of the disease, clinical pattern, biological parameters, prognosis and outcome were investigated and compared in both ethnic groups. The results of this study show a high incidence of CLL in Israel. The mean annual age-adjusted incidence 4.3 per 100000 person-year is among the highest reported values. Our study confirms previous data on the prevalence of CLL in Ashkenazi compared to Sephardic Jews. The rise in CLL rate in the reviewed period occurred in both populations, mainly in the Sephardic group. The relative risk for Ashkenazies compared to Sephardics decreased from 6.0 in the 1975-1979 period to 2.4 in 1990-1996. A high rate of CLL was found in new immigrants from the former USSR with 26 cases de novo diagnosed and 11 prevalent cases not included in this series among approximately 60000 new immigrants in the area over the last 8 years. No differences were found in clinical, laboratory and immunological parameters at the time of diagnosis in the two ethnic groups. The follow-up showed a similar pattern in the disease evolution. A preliminary study of immunoglobulin heavy chain rearrangement performed in 14 patients showed no significant differences in JH hybridization in the early stages of the disease, but more aberrations in advanced CLL in the Ashkenazi group. Our findings suggest that ethnic origin of the patients itself does not affect the biological and clinical behavior of this disease.
PMID: 9766507
Article Highlights
This study talks about 302 cases of CLL diagnosed at the same institution in Israel over a period of 20 years (1975-1996). Of these 302 patients, a whopping 69% were Ashkenazi Jews, while 32% were Sephardic Jews. This is the clearest data I have seen demonstrating the preponderance of Ashkenazi Jewish people stricken with this disease.
More troubling is the trend towards higher incidence of CLL in the region over the years. The present population of the southern area of Israel served by this institution is around 430,000. The authors point out that due to immigration the population in this part of Israel has expanded and therefore we may conclude there were fewer people living there back in 1975-1990. The population base is higher now.
As you can see from the graph above, the total incidence (number of cases diagnosed per 100,000 people per year) has increased quite a bit over the time period, from 2.5 to 4.3. That is a 72% increase in incidence of the disease over a 20 year period. The trend continues to reflect emphasis on Ashkenazi ethnicity. In the Ashkenazi group the incidence is astonishingly high at around 7 cases per 100,000 people per year. Looking at these trend lines and larger population base of today, it is reasonable to expect many more people are diagnosed with CLL today in Israel.
The authors did not see any significant difference between the two groups as far as disease severity or clinical progression is concerned. They explore the impact of diet, occupational exposure to pesticides and farm chemicals, increased life spans due to better medical care, etc. among the factors contributing to the increased incidence of CLL in this community. Please read the full article to get all the details.
CLL Incidence in the USA
As a comparison to the situation reported in Israel, here are the statistics of CLL incidence in the USA, reported by the NCI in their SEER surveys. Below is a table of the incidence rates of CLL by race, between the years 2002-2006.
The average incidence across the whole country, men and women, is 4.1 cases per year per 100,000 people. It is estimated that 15,490 people (9,200 men and 6290 women) will be diagnosed with CLL in the USA in 2009, and this year there will be 4,390 deaths due to CLL in the country. Men are more likely to get CLL than women, and incidence increases with age. I have read Minnesota leads the nation in CLL – attributed to the heavy use of farming chemicals in that agro state. The other “hot spot” is Brooklyn and New York in general, with its high percentage of Jewish people. (I will publish the link and abstract when I find it again. My filing system is getting overwhelmed with the number of articles I have collected over the years).
SEER has this to say about life time risk of getting CLL in the USA:
“Based on rates from 2004-2006, 0.47% of men and women born today will be diagnosed with chronic lymphocytic leukemia at some time during their lifetime. This number can also be expressed as 1 in 212 people will be diagnosed with chronic lymphocytic leukemia during their lifetime”.
Based on recent research with familial CLL clusters, we know this risk goes up approximately 8.5 fold in people who have first degree relatives with CLL. For this select group (with first degree blood relative with CLL) the risk is therefore in the region of 1 in 25. It came as a bit of a shock to me.
While the NCI does not specifically mentions Ashkenazi ancestry as a risk factor, it does list among the risk factors “having relatives who are Russian Jews or Eastern European Jews”. Same thing, no difference (I think).
Editorial
We don’t yet know what exactly causes CLL. But we do not a few things. Here they are:
- Men are more likely to get CLL than women.
- Risk of getting CLL goes up very significantly with age.
- Some ethnic groups are more prone to CLL than others. In particular, Ashkenazi Jewish people are more prone to CLL than other ethnic groups.
- CLL is a familial cancer. People with first degree blood relatives who have CLL are more likely to get the disease than the general population (8.5 times more likely).
- In some families with multi-generational clusters of CLL, kids and grandkids with CLL are likely to get the disease at younger ages, and it may be more aggressive as well. This is called “anticipation”.
What does this mean in the real world? As I wrote in an earlier article, the worst day in your life is not when you were diagnosed with CLL. That “honor” is reserved for the day you are told a beloved child or grandchild has inherited this incurable cancer from you.
How then do we protect our kids? What do we do? I have struggled with this issue myself. In spite of our combined best efforts, my beloved husband died, a victim of aggressive CLL. We have a much beloved daughter. How do I protect her? What can I do? Here are some thoughts that I would like to share with you.
- Knowledge is our best defense. Stay involved, stay informed. How can you fight something you do not understand?
- Support new research and clinical trials. That is the only way we are going to get improved therapy options for our kids down the road.
- Support patient advocacy groups. Compared to more “popular” cancers such as breast cancer or prostate cancer, or more deadly cancers such as non-small cell lung cancer, CLL is a Cinderella that has not yet met her fairy godmother. Our numbers are small, it is still thought of as the “good cancer”. Our voices will not be heard unless and until we mobilize, learn to bury our petty differences and jealousies and work together.
- Educate our kids in the things that they can do to stay healthy. That means eating a healthy diet, maintaining good body weight, exercising regularly, getting regular medical checkups and vaccinations as they are needed, stay the heck away from smoking, drugs etc. You and they know the list. It is a question of getting it into practice. I am told Jewish mothers and Indian mothers excel in the art of ‘guilt-tripping’. Frankly I think all mothers learn this skill early on. How about using it to help your kids stay healthy? A little bit of loving nagging goes a long way…
- Please teach your kids not to ignore chronic inflammatory conditions, not to treat low level infections such as “walking pneumonia”, chronic sinusitis like they are a joke, to be ignored. If they can be dealt with, if the inflammation can be brought under control, so much the better. Multiple episodes of pulmonary infection / inflammation have been cited as a common theme in people who go on to be diagnosed with CLL.
- I understand supplements such as fish oil (omega-3 fats) and adequate level of vitamin D3 can help keep inflammation at bay. But please be sure to do your own due diligence and check with experts before you start any supplements! Self-medication can sometimes be counter productive (mega doses of vitamins A & E are not good for cancer patients, for example)
- Ethnic minorities are not well represented in stem cell banks; they are harder to match when the need arises for allogeneic stem cell transplants using matched unrelated donors (MUD). While cord blood promises to be a good source of stem cells and makes it possible to find matches for many more patients needing transplants, even here donor recruitment lags behind need in ethnic minorities. Get the word out folks. Get your communities understand the need for more donors (both adult stem cell donors and umbilical cord blood donors). Without grassroots efforts to expland our donor base we will continue to have patients dying because they cannot find a suitable donor for a life saving stem cell transplant.
I am sure you have your own thoughts on the subject. Let’s hear them. I am delighted more and more of you are taking active part in the discussion that follows each article on Updates. Even more amazing, everyone has been on their best behavior. I have not had to take anyone to task for lack of politeness or straying from our comment guidelines (on topic, no politics, no religion, no snake oil, no heavy-handed ‘marketing’, no practicing medicine without a license). No “trolls” here, no tin foil crowd! If this site continues to be a class act it is because of you guys. I am so proud of you.
50 comments on "CLL: Does Ethnicity Matter?"
Thinking of cellular genetics, this is more compelling evidence that while CLL may be a response to environmental triggers it is the original collection of genes in the cell, the personal genome that predisposes to CLL.
The fact that CLL is common in some genetic groups/ families and extremely rare in other groups is empirical proof of this, that so far has not been refuted by any other evidence.
Not the legacy that we wanted to leave our families, but they must know about it.
There is an important concept called “soil and seed” to explain incidence of disease. “Seed” refers to the genetic inheritance we all get from our parents, the chromosomal abnormalities that are the basis of inherited diseases. Familial CLL is a clear indication of the importance of the “seed” part of the equation. “Soil” refers to the environmental conditions that are implicated in disease. Both are important.
The fact that there is an obvious genetic component to CLL does not rule out the importance of environmental conditions. Vietnam vets exposed to Agent Orange are also at higher risk of getting CLL – even if they have no blood relative with CLL in their families, they are not of Jewish ancestry etc.
“Based on recent research with familial CLL clusters, we know this risk goes up approximately 8.5 fold in people who have first degree relatives with CLL.”
Chaya, forgive my ignorance – would ‘first degree’ include grandchildren or does it mean strictly children and siblings?
Thank you so much for your site – I have learned so much from you.
Chaya,
I like your seed and soil analogy. It might be worthwile investigating whether anxiety and stress can ‘trigger’ CLL.
Jankat:
Parents, full siblings, children are first degree relatives. Grand parents are second degree. Here is a link that spells it out:
http://www.datadictionaryadmin.scot.nhs.uk/isddd/24260.html
Paul:
I cannot take credit for the “soil and seed” hypothesis. That was the work of Stephen Paget, assistant surgeon to the West London hospital and the Metropolitan hospital way back in 1889. It was a milestone concept and led to better understanding of how cancer spreads through the body.
As for stress and anxiety, it is now reasonably well accepted that both of these modern day scourges lead to immune dysfunction, greater susceptibility to infections – perhaps cancer? In any case, stress and anxiety rob us of quality of life.
I have always wondered if anxiety and stress triggered my own CLL. It reared its ugly head after a drawn-out divorce followed by a re-marriage and menopause kicking in right after. What a combination!
Thank you Chaya for your intelligence, kindness and generousity for making this site a “class act”. Thanks to your daughter, too for being such a great webmaster.
I do not fit the typical cll patient profile with regard to ethnicity, gender or age at diagnosis. However, I have familial CLL. My mother who is a Catholic Italian American was diagnosed at 70 with stage 0 CLL. She is now 89 and still a stage 0.
I was diagnosed at age 50 with stage 1 CLL.
Dr. Gerald Marti and Dr. Neil Caporaso at the Genetic Edpidemiology Branch of the National Cancer Institute are studying familial Cll. According to their their website I fit the profile for familial CLL as I was much younger than my mother at diagnosis and my Cll was at a higher stage than hers (but I am grateful that at almost 2 years after diagnosis, I am still watch and wait.) To partiscipate in the study, one needs to have 2 living relatives with Cll or other blood or lymph node cancer. Partiscipation in the study involves filling out a detailed family history, possibly coming to the Maryland clinic or contibuting blood and cheek samples when you see the doctor (which I did). My mother also partiscipated and I am hoping other family members (who do not have blood cancer) will also.
Since I have daughters, I hope by being in this study and also in another one at a research hospital in a nearby city involving studying the immune system of untreated B cell CLL patients to hopefully better future treatment options, things will be better in the future.
My mother, myself and my daughters try to eat a healthy diet that is low fat and rich in fruit and vegetables and excercise. Mom has always been a big walker and interested in nutrition.
Interesting, however,….
just a look at the US chart above indicates that other groups are larger (10.2 all groups male, vs 4.2 white males, and on the female side, whites, 3.1 and 4.2 other) than whites taken as a whole, which I assume includes Ashkenazis Jews . the other groups are groups that are not commonly known to have intermingled with Jew’s of any stripe; in any era ie, black, hispanic (which I assume does not mean from Spain) and Native American/Alaskan Indian. At least not in large numbers.
a check on the Wikipedia article on Ashkenazi Jews is quite enlightening for many reasons. They deal with Y Chromosome DNA and Mit DNA, the female. This was particularly interesting since “Jewishness” has always been dertemined by one’s mother’s line, Matrilineal. Yet it seems that in Jews there are more similarities in the Y DNA… having a little trouble with this one, also, this quote. “”Furthermore, the word Ashkenazi is being used in non-traditional ways, especially in Israel.”” Hardly anyone in Israel agrees on who or what is a Jew. In Israel it’s almost more political than religious. The study quoted here was done in Israel, so one has to wonder what they consider an Askenazi Jew. In Brooklyn and
in colloquial conversation in the US Askenazi more frequently equates with such serious debates as to whether one eats borscht with egg or potato.
This may be my personal fear, but I would love to see exactly what, which DNA is connected to the term Askenazi before everyone who eats corned beef starts to worry.
My other worry is one of racial bias. The study I was part of in the 1940’s where 5000 children were radiated was followed up by the NIH and the research results were reported in the 1970’s, showed the effects of radiation on the group broken down into, Blacks, Caucasians, Jews and Christians. I found that shocking for a scientific report. The ‘justification’ given was that Sephardic Jews are known to carry certain traits. Somehow that didn’t quite explain the choice of ‘races’ or what they hoped to prove by that. This is especially true since at the time these children were radiated the population using Michael Reese Hospital and it’s doctors was largely Jewish. The South Side of Chicago was never Sephardic dominant.
Askenazi Jews originated as far east as Babylonia with Baghdad being a major trading center, and moved west over centuries. For a long time the center of Askenazi Judiasm was Germany. In America, however, German Jews hold themselves away from what they consider Ashkenazi Jews. Hardly anyone agrees on what that group constitutes. I just worry about ‘scientific’ data unless it is based on clear definitions, and I am not sure one can do that with a term like Ashkenazi. just my thoughts.
CLL undoubtedly has the ability to pass among families, but is it genetic, environmental, a combo, and if there is a genetic path, is it the same gene or genes. Or what else do people of similar backgrounds have in common, such as viral infections of a certain type? Perhaps that is more important to determine.
beth f
Hello,
The day you have a diagnosis of incurable cancer thrown at you is debilitting and the lies which follow, are even more horrendously debilitating. Familial….well it is like handing a death-sentence to your children/grandchildren!
The callous indifference is also frightening
Mette
Chaya,
I remember participating in a Familial NIH study in 2001 & Drs. Marti & Caparossa’s first question was, did my family come from Eastern Europe & of course, the answer was yes. Now they have on their web site the familial connectivity to Russia & Eastern Europe.
Additionally, when I was diagnosed in 2000, the statistics were that 10,000 a year were diagnosed in the US with CLL. Now it is over 15,000. Does this have more to do with the fact that Drs. are finding CLL earlier? It seems now that when you go to a doctor for a respiratory illness or such, they do blood work. Many years ago they never checked out your blood work to see if there was an underlying condition to why you were ill.
Thank you so very much for writing about this. By the way there is a web site that is a jewish registry that people should look at as well as distribute to their friends to help all of us out if we need a bone marrow transplant. It is http://www.giftoflife.org/Pages/History-Overview.aspx.
Anne
One thing struck a chord – Minnesota. I am from Minnesota. I lived on a farm. Two others who lived on the same farm died from lymphoma. I have no doubt that the chemicals used on the farm could contribute to my acquisition of CLL.
Now the question becomes will a majority of farmers learn from this correlation and switch to organic farming?
I am obviously missing some cultural nuance here, perhaps some sensitive bit of political correctness that I don’t quite get. If I am offending anybody by my insensitivity, I apologize.
Cancer is a disease. CLL is one example. It is not a curse, it is not anyone’s fault, it is definitely not something to be ashamed of. And it is not a “death sentence” to our children and grandchildren! Not with the kind of statistics we are talking about here. Heck, if our kids make more healthy choices as a result of being warned about potential risks, they may well avoid a lot of other illnesses that are the result of poor lifestyle choice and come out ahead!
I see value in knowledge, prior warning, being aware of risks. Is there a genetic component to cancer? You bet. The genetic risk factors of breast cancer have been known for a long time. Does genetic risk factor mean certainty? Absolutely not! According to the probability factors CLL happens rarely in people of Indian origin. Yet my husband died of CLL (he is ethnic Indian). PC had no exposure to carcinogenic substances as far as we know.
As for callous indifference, I do not see a higher level of indifference in the case of CLL compared to everything else that is going on. We have limited resources and unlimited number of squeaky wheels. Everyone is hurting, not just us. Today I met a woman who suffered bad burns on her hands, cooking accident in the kitchen. No one to take her to the hospital, no money for pain killers. All I could give her was an oxycontin pill I had as prescription for my headaches. You need to live in a third world country and be a part of the dirt poor underclass to truly understand callous indifference.
Should we be talking about these kinds of possible genetic links without getting bent out of shape? I think so. Yes, there are nasty s.o.bs out there who would like to “profile” and stigmatize people, based on their own sick philosophies. Does that mean we have to stay silent, never bring focus to this issue, pretend it does not exist?
You tell me.
I agree with Chaya. I do not think that we have to nitpick over Sephardic or Askenazi Jews as to how israel interprets who comes from which ancestery. We have to understand that Jewish people are significantly more susceptible to getting this Cancer. We did not understand this when my Uncle passed away in 1980 from what is now called CLL, and my Mother was diagnosed on 1999, and then I was in 2000. At that point we realized that we were a family that had CLL & now I worry about my children because they have researched in most major CLL facilities about familial CLL & the predominance of Jews in this group.
Also, what they did in the 1940’s for the radiation testing is not something that would be researched now. I am reading the book “The Help” which talks about blacks & whites in the 1960’s – very good, by the way. The point I am making is that blacks had to use separate facilities because the whites thought that the blacks had different diseases than whites & the whites could get it from the blacks.
Let us all realize that there are genetic components to our makeup & we bring this baggage with us with each generation. May our help in research as familial CLL patients find out the reason for this risk factor.
Anne
Hi Chaya,
Speaking of “seed and soil,” after using the herbicide “Oxbox” on the heavily overgrown poison oak on my forested property in Oregon for 2 consecutive summers (and I wore a mask and gloves), I was diagnosed with CLL. That was 2 years after using the product, in February of this year. It was accidently discovered during a routine CBC for a refill on my thyroid medication by my GP in Georgia where I now live. After the diagnosis, I like many others, spent days researching this cancer that I had never heard of prior to my own diagnosis. I learned that pesticides could be a possible cause. When I found the information on “Oxbow” on the internet I discovered the main ingredient was the same one used in Agent Orange. That was a shock! Basically, I believe I unknowingly wrote my own death certificate by using a highly toxic product that was available at the local hardware store only 4 years ago. Something I didn’t even have to do. Makes me sick to think I could have avoided this if I just hadn’t tried to rid my property of poison oak. I have no familial CLL, in fact, no cancer on either side of my family for generations, so I was always sure I would be home free, at least in the cancer department. My hope is that my children are not at a higher risk than the general population if that is the way I contracted CLL. They are grown and didn’t live on the property at the time of the spraying. Of course, there is no way to know how any of use were so lucky to have received the CLL “gift” and I am only guessing about my own case. Once again, my hat is off to you Chaya for bringing us more information. Nancy
Jewish since birth. Plenty of stress flying undercover airplanes for the DEA, DX “double mono” at 18. Worked on U235 in dirty Atomic Bombs in the Air Force. Hung around hospitals, and nursing homes donating my time for patients with no relatives or friends, DX CLL 2004. WBC today 253,000. 13qx2. Age 75. Untreated to date. How’s that for a can of statistical worms? Oh yes Chaya, my poison ivy took a month to heal up. Normal time is 2 weeks. Can’t wait to see the counts in a couple weeks from the great J.C. Byrd. Might be looking for a cliff.
I’m a white non-Jewish 53 year old women with CLL. I grew up in Los Angeles when it was vary polluted and lived there until I was 31. I drank the tap water, ate non-organic food and smoked cigs. My bedroom growing up was right next to my mom’s art studio, she painted with oils and used turpentine. I too am a artist and have used many a chemical. I have hoshimotos, herpes and a strain of HPV. I believe I have a genetic mutation because of what I have done to my body. I think the increase in cancer cases is directly linked with the air we breath, the water we drink, the food we eat and the chemicals we but into are bodies. Lets start talking about the world we live in.
sanesh
Above,earlier, you have indicated that cll is rare in indian origin people, i would like to say that it is not the case i am also cll case of indian origin .Although the cases are less as compared to others ,but still they are there, as one can see in major hospitals in Delhi
May be due to this we are not having any cll groups in India.
Sanesh:
The comment that CLL is less common in people of Indian ethnicity (compared to Caucasians) does not mean it does not occur at all in India. With a billion (or more) Indians around, I expect there will be quite a few cases like you. There is big difference between population statistics and individual cases like you and my husband. Let us try and keep our perspectives straight on this.
My comment stands, CLL is less common in ethinic Indians.
Just another reminder that “ethnic” and “familial” do not mean “genetic”.
Until we know causes from experiments, population studies just show associations.
Hello,
Yes I fully agree that Chaya is both a gem when it comes to serching out and destilling information, which often is either too convoluted or jargon-infected to be easily digested by ordinary mortals. Thanks.
Yes, I very early forund the curse which this disease is, has certain ethnic connotations, but hey, why split hairs. I am neither jewish, nor American, nor British, where I live. I used the term callous, because I was just stemrollered through, via breast screening! believe it or not. Following that I have had a rude awkening as to the thruthfulness of an awful lot of what passes for information.
Re; “good cancer”; to have chucked at one that “I would not term it cancer at all, nor leuchemia and it is unlikely to shorten your natural lifespan”, from someone who is supposedly a specialist, is , well….. The first one does is look things up! And all those statements are twaddle. If one is 65, (OK, so the healthsystem regards that as OLD), genetically both as a “race” and as a family, I come from a background of very long-lived women. (Scandinavian, female relatives 88/98 etc) top 10 years survival with this curse, makes 75….even male average in this country is considerably more than that. Well tolerated treatments which “I can hit it with again and again”, the mind boggles; callous generally because everything done, without given chance to have a say, (it has to be done), just to diagnose Cancer, Yepee!, then , oh, you are old go away, be glad you have got to know.Go join the cancer-suffers’ club, find some other like you to console yourself with, see a psychiatrist, dietician etc, all funded by charity. The only thing which did not appear to be considered was, normal life! And as to the ffect on ones nearest and dearest, forget it. I keep things secret; faux sympathy and the inevitable “how long have you got” is sickening. The stress induced by What was an unnecessary diagnosis, very early stages, would not have been noticed for years yet, what purpose does that sort of thing serve? No treatment is needed, it would be of no benefit, even if one were a “treatment-addit”.
OK, enough, establishment of familiality has also very keenly been reserched over here, and yes, it has been established. With all the possible consequences you mention. (wish there were as much spent on genuine research for “cure” as for diagnosing this cancer.
Thank you very much, Chaya. Mette
You are SO right as usual Chaya. My worst day was when my son was diagnosed, not with CLL, but with a grade 4 Gliosarcoma!!! (He’s had all the treatment and so far is in remission from the Glioma, but the operation gave him epilepsy-like symptoms which are a real drag.)
On the good side, I am glad you included a picture of Stourhead. If anyone comes to England they should make an effort to see this garden, it’s lovely. Search for “Stourhead National Trust” if you’re interested. Me, I find gardens in general give me a good feeling…
Mette,
You are in the land of Dr. Terry Hamblin, one of the great CLL docs and researchers. Have you thought about seeking out him or his colleagues? It sounds like you could use a good dose of feeling like you are “taking control” rather than being ground up by a system.
Also, it sounds like you are justifiably depressed as we all are, at times. That said, I found that being very open with my friends and family about my illness was less stressful than keeping it all simmering within. Friendship is a two way street and by blocking out those who care for you, you may not be being a good friend to them as you may not be allowing them to show how they can be a good friend to you. Just my humble thought.
molly fletcher
It is very interesting Chaya, that the hotspots for CLL are in Minnesotta (crop spraying) and New York (regular spraying inside apartments against cock roaches over the last 20 years).
I do have Eastern European genes- a German mother- but in my case, I am sure my CLL has a strong environmental factor as well.
I was exposed to the organophosphate pentachloraphenol (same family as Agent Orange) when we first moved into our house. It had been sprayed in the house against wood worm by the previous owners. It had soaked into the carpet underlay which I swept up. Then I became ill with chronic symptoms of rhynitus, flu like symptoms and a phlegmy cough that lasted 5 years and was unsucessfully treated as asthema. Then I had a blood test through the doctor and found raised levels of pentachloraphenol, lindane, dieldrin and DDT.
I went on an organic diet, went off cows milk, generally cleaned up my act and I got better.
Then, years later I get CLL. I looked on the net and found many cases where CLL was caused by exposure to pentachloraphenol. There would be clusters of six cases in one wood factory but it wouldn’t show up in the workers until many years later. The period of latency from exposure to onset of CLL is 14 – 17 years. We moved into our house exactly 15 years before I developed CLL – that’s too close for comfort for me.
The trouble with pesticides/insecticides/fungicides is that their effects are delayed and nobody’s testing the long term results of carrying a cocktail of small doses.
Now they’re saying there’s a connection between honey bee colony collapse and pesticides found in their hives – it affects their immune systems.
Lynne, Thanks for comment. Of course one gets depressed by this sort of thing, but the dishonesty one has encountered makes things even worse. No, I do not believe one does anyone any service by foisting this kind of knowledge on them. Selfishly, if cancer in any form gets known, either pity or avoidanse seems to result. Have “worked” at Hospice for over 10 years as volunteer, have seen a lot! Have decided that self is not going down that road.
The illness would not have been known, and there was and is no need or benefit of knowing; my warning is that “systems” are no respecters of individuals or of humanity. A lot of Doctors do a very good job, often in spite of systems. And people like Chaya are invaluable for their honesty and respect for people, a genuine humanity. That is a respect which too often is absent.
This site is also invaluable, giving honest insight. Thanks for bothering anyway
Chaya,
Buried in your comments was a statement that large doses of Vit A & E are likely bad for cancer patients. Can you give some references for this statement. I am new to the site…maybe with some poking around I can find a way to search for this…instructions on where to do this would be good, but you obviously already have some sources in mind.
Vit A is part of my protocol. There is a potential for toxicity. I assume that you are familiar with Ralph Moss. I have his report on CLL. He does not indicate a problem with Vit A. Concerning Vit E he says there are many studies that are positive, but some people who seem to be at war with CAM methodologies in general will focus on some studies that have had negative results.
Again I am new to this site. How do I know if you or someone else has responded to my comment. I ask this because there are many different threads of comments. Is there a mechanism, like Facebook, that a notice is sent when someone comments a post one has made on any thread?
Lorraine:
So many stories & I suppose we’ll never know for certain why any of the people writing on this site have CLL. And in the final analysis, really, it doesn’t matter. We have it now. Since I was diagnosed w Tcell CLL in 2001, I have spent countless hours trying to figure out which of the many risk factors caused this. Was it the exposure to Toluene in the recreational furniture stripping I did in the 1980’s which caused my original blood dyscrasia? Being an Ashkenazi Jew w a father who died of ca of the pancreas ( he was a chemist, by the way). Or could it be a link in that my sister was diagnosed w ca of the ovary (also prevalent in Ashenazi Jews)six months after my diagnosis or that her son, (my nephew) was diagnosed w Ewings sarcoma 3 months after that. After all the diagnosis & genetic tests & hypothoses about links between all of us, my sister & I both tested negative for the BRCA mutation & my nephew for a link between ovarian & pancreatic ca & Ewings sarcoma. They both died anyway, 11 months apart, & in the final analysis were told no, it wasn’t hereditary or genetic, just “bad luck”. Or maybe it’s because I live in NJ. The end result…the majority of the people reading this have CLL, the studies about higher incidence in Ashkenazi Jews in interesting & I’m sure the statistics are worthwhile, but most of us will never know for certain where or how we got what we have.( And FYI, Chaya, Eastern European also refers to German & Polish Jews, as differentiated from Russian). My theory is this is just one more link in the chain we’re creating as we choke the life out of this planet we call the Earth. I applaud you Chaya, for bringing this information to us, I think we should all be as well informed as possible. But I think we place far too much importance on the cause as we ingore the prevention.
I am totally amazed by the obvious “chip-on-the-shoulder-politically-correct-search-for-perfect-definition” attitude about the possibility of an ethnic (genetic)(familial) or whatever link between a disease and the people who suffer from it. For myself, I want to know everything there is to be known about this “good” cancer I have. My “good cancer” is complicated by other non-related health issues. Non-related as far as I know, that is. I know there is some sort of link between CLL and Lupus, which I do not have, but my daughter does have. I know that this “good” cancer makes me more tired than I ever thought it possible to be. And I also am aware that offspring of CLL victims are much more likely to suffer breast cancer.
I’m pretty sure that for me there is a link to having grown up on a farm in the Deep South, a freckled redhead having chosen to spend much time in the sun helping to earn the family living,including spraying crops (I always loved operating heavy machinery.. would rather do that any day instead of necessary housework.) and to my having chosen chemistry as a career. (remember that motto: Better things for better living through chemistry) So, among other problems, it comes as no surprise that skin cancers have to be removed often. Pentachloraphenol was used to treat fence posts and wood in barns to prevent rot and insect damage. I could go on and on about possible things that could have been done differently had we all known better. Suffice it to say, I wish I didn’t have this disease since it is starting to put a serious crimp in my lifestyle.
Thanks for letting me “vent”, and thank you so much for for this newsletter.
Betty
Has anyone out there in the CLL world tried the Gerson clinic or any other natural healing type of approach? If so I would love to here the good and the bad.
I was Diagnosed with CLL in Feb. 2009 and the thought of pumping my body full of chemo therapy makes my skin crawl.
Tommy
Hello again,
Tom, am with you 100% on the chemo front. The toxic effects of that is also cumulative; as by the way are frquent exposure to X-rays! I do refer to the means by which I was routed into this horrible knowledge! (The very first thing I was rushed through was, CHEST-X-ray and full body CT scan! Followed by unnecessary operation which let lymph-fluid drain freely into surrounding healthy tissue. All because “the protocol” said that it had to be done, and done within two weeks”, the results could take months to be reported on!
It is very kind to let people compare experiences whilst receiving untainted proper information: which is neither patronising nor slanted to manipulate you into …..well.
Tom, demand proper information, don’t let yourself be “fobbed off”, the usual path might not be for you, and it is your life, your body!
And to Lynne again; I do not condemn the whole system here, would definitely not change it for the USA one. We have private insurance here too, and have experienced the full meaning of “previously existing conditions, and chronic conditions which means excluded from cover, that and much else.
Stress, which is increased hugely by overly early information of ANY chronic condition, let alone an incurable, very ugly one, is detrimental to all forms of well-being. That is another reason not to inflikt this sort of knowledge to ones dear ones, and should be a potent contra=indication for striving to diagnose at any cost, it might, is even highly likely to accellerate the course of this sort of illness. Just another thought.
Re another update; this thing is imune-system destoying/compromising; insist that infections are treated to be illiminated, not just dampened with an insufficient “sticky-plaster”, don’t be sastisfied with empty reassurances, demand chapter and verse, “robust” reasoning, proven reasons for pathways, it is your life! It is the usual procedure is NO reason to comply. Good luck!
And again, thank you to Chaya and whoever helps her.
molly fletcher
re genetic clusters of CLL in certain cultures, I once saw a docu about the staggeringly high rate of all sorts of cancers in Iceland – I think it’s the highest rate in the world. This came down to the Icelandic people coming from a very small gene pool, for obvious geographic reasons.
I recently got talking to a woman whose father was a farmer. When she was a girl,he let her roll around in the freshly sprayed cut hay. Then in her twenties, she got non hogdkins lymphoma, luckily she survived. This cancer has gone up by 70% in the last 15 years in the USA. I hope it’s not our abundant use of pesticides in the last 40 years, coming home to roost.
I, too, am one who spent youth and early adulthood using a lot of herbicides on a farm. While it has not yet been settled to “cause and effect” (as for as I know), the correlations do seem to pile up.
I see as much reinforcement of that in the supposedly ethnic correlation as I do in the ethnicity, itself. At the top of the list are whites and blacks, both of which I am suggesting have more generational history with farm chemicals than do Asians/Pacific Islanders, Native Americans, and Hispanics. I have no data to support that; just eyeball observation. In short, where industrialized agriculture has grown over centuries, so has CLL. The difference between European Jews and Asian/Mediterranean Jews could be confirming that more than ethnicity, per se.
Now add to that a thing called “epigenetics.” A recent edition of NOVA on PBS lays it out marvelously.
The short version: Environmental influences, such as farm chemicals, or famine, or even the lack of a nurturing mother, visibly alters the genes—including susceptibility to disease—not only of the person at hand, but his/her children and grandchildren. It is thus conceivably that those groups or societies (ethnic or otherwise) that have traditionally been involved in large-scale agriculture (including use of chemicals), have been transmitting steadily accumulating genetic damage to their heirs.
House Rules: Please read.
Running this website is a lot of work and not always fun. Here is one of the less fun things I need to do.
I have my own thoughts about how healthcare systems ought to be run. I am sure all of us have our own opinions on the subject. Right now it is a much politicized subject and emotions run high in any discussion regarding it. Hence, I would appreciate no further discussion on the merits of healthcare systems, USA or otherwise. That falls under the category of “Politics” and not part of our charter. Please refrain from any further comments along those lines.
The second point has to do with Gerson therapy. I am quite aware many people believe in this therapy. Not me. Good nutrition is important part of health; there is no question about it. But good nutrition (or complicated dietary guidelines) is not going to cure aggressive CLL.
Clearly identified chromosomal lesions cause CLL. Some patients are lucky to have indolent forms of this cancer and can look forward to long W&W periods, especially if they also adopt healthy lifestyles – such as healthy nutrition. Their CLL is not CURED because of the diets, luckily for them their cancer is in a holding pattern. Others are not so fortunate. No one in their right mind would undertake chemotherapy, except and unless they have aggressive cancer and the other option to chemotherapy is sickness and death. I cannot agree with the concept that all chemo is bad. Cancer patients would be dead a lot sooner without chemotherapy drugs. Cancer is bad. It forces us to use drugs that we would otherwise not want to. But we would be foolish to throw the baby out with the bathwater.
I know this will not be a popular position with some of our members. My intent is not to be offensive or heavy handed. But I am the owner of this site and my personal biases are clearly spelled out in the “About Us” section. Updates is also a moderated website. If you can find value in what our clearly spelled out charter says about us, please feel free to use the information we provide, as well as the discussion of our members. I have no illusions (or desire) to be all things to all people.
But if your interests lie elsewhere, for example in learning more about the Gerson Diet etc, you might be better served by a couple of other groups on the internet that do a far better job of that. Here are the links, for your convenience:
http://www.cllforum.com/
http://health.groups.yahoo.com/group/CLL_Alternative_Therapies/?yguid=113312509
I have been called a “chemo Nazi”. I receive hate mail, sometimes very personally hurtful stuff. One disgruntled fan of the Gerson diet wondered if I caused my husband’s death because I would not recommend it to him. The best I can do is be up-front in my own beliefs and biases. I worry about the harm that websites like this one can do, notwithstanding our good intentions, by staying silent when issues like this crop up. I will keep running Updates for as long as I can, but only if I can keep it going without compromising my own convictions.
As they say, this is a free country, Updates is a free service, everyone is free to vote with his/her feet.
Molly Fletcher
Chaya,
Because of information from Updates, I stopped ‘watching and Waiting’ and moved to Barts Hospital. Because of Updates, I had a FISH test done.
I was taking chinese herbs but unfortunately they couldn’t stop my CLL cells from going up. Chemo was the only thing that stopped them and I now have a complete remission.
Chemo was a horrible experience but I am so grateful for the opportunity of living another 4 years before the next lot. At the moment, chemo’s the only show in town, however much faith we have in alternatives.
Your website is invaluable for the quality and extension of life, in living with this disease, thank you.
Chaya
If it had not been for you, I would not have seen a specialist in CLL. At that point, he recommended chemo, which I did in 2004 under a trial. it is now 5 1/2 years later & I am still in remission. Based on the trial data, most of the patients came out of remission between 3 to 31/2 years. I feel very fortunate at this time. I agree with Molly in that chemo was not a good experience, but it has enabled me to live these past five years & enjoy my life. Who knows what other options will be available when I next need therapy for my CLL.
Thank you for your having this website so we know what our next options might or might not be. I truly believe that you help us ask the right questions & challenge the doctors to help provide the best treatments.
Thank you for your help & your guidance
Chaya,
I appreciate you maintaining the integrity of this site. That is why it is my primary source of information and communication.
Thank you!!
Chaya,
I too appreciate the integrity and clarity of this website. I also appreciate your clear direction as to its content and parameters.
Judith
Chaya,
I third that, regarding appreciation to you for providing this website as a place to vent our thoughts and gather invaluable information from you. BUT the recent REPETITIVE negativity isn’t necessary. We’re all in the same boat with our diagnosis, and as you have said in the past, if you don’t want to know the truth, you don’t belong on this website. Enough said. Thanks again and please keep it coming.
Thamks for your tolerance, Chaya and the rest of you too.
I do feel I must have transgressed, did not mean to.
Before “landing” with you, I did a lot of other reading, in various languages and at various levels. Ther is a lot of very contradictory material out there. And an awful lot of biased sruff.
I was very pleasantly surpriced when I found this sire, and its clear summaries and untainted views.
How various systems are applied sometimes matter as much as the systems.
One of the most sympathetic “feelings” around everything at his site, CLL topics, is the sheer humanity. I would say you are an unusual human being who bothers, particularly because you have gone through hell, loosing you beloved and probably fearing for your daughter. I have three and six grandchildren!
Please do carry on, and thanks.
Have there been any studies of the Jewish population living in places like Belarus and Ukraine, and whether or not Chernobyl radiation combined with Ashkenazi ethnic background has raised the incidence of blood cancers like CLL or CLL specifically? There seems to be so little research on this, at least what I am aware of. Perhaps it is in Hebrew or Russian as well, and not in English. Thanks.
Please read our earlier article on radiation and CLL. There have been some studies of general incidence of leukemia in and around Chernobyl. The findings suggest that radiation may play a role. However, it is too much to hope that they would have bothered to break out the data to look at the specifics of ethnicity.
I am of Ashkenazi Jewish ethnicity. Both paternal grandparents were born in Russa. My father died from complications of CLL. I was diagnosed three years ago at age 64 along with Type II Diabetes, ITP and severe skin rashes. Three rounds of Rituxan has has put the CLL and ITP to “sleep”, but the severe rashes remain.
Chaya, thanks for all.
I marvel at the thrust of your research and how you continue to find things relevant for the CLL family. Thank you for your hard work and professional stance in all that you do. The world would be a far better place if there were more Chayas in it.
Beth Havey RN wife to cller John
I just thank you for all you do for us CLL’ers the information is most valuable. as you say there is value in knowledge
Thanks
Bob
My CLL has turned very agressive I’ve had over 25 rounds of Rituxan every 21 days over the past 4 years following my lung cancer surgery. I’ve also had 7 months of CVP last year, now my immune system is compromised and am having IGG once a month pluse trying Rituxan again every week, and I never never chucked or been sick, sure you don’t feel 100% but nothing like what it used to be, if this is what I have to do to survive I will do it, but am running out of options soon, I look at going for treatment as having a tune-up or an oil change, Keep on trucking, I feel like the energizer bunny.
Nancy
Hello from another Russian Jew with CLL and ITP
I follow a very strict diet-organic, vegan, most local and raw. And nothing with a high glycemic index. Do I think it will cure me? I wish!
Also take Vit D3 8000 units a day to keep my level of Vit D3-OH between 70-100. Do I recommend that to all? Not without monitoring and your doc’s OK.
I take flaxseed oil and essential fatty acids (Budwig diet) Is it the cure? That would be nice.
I mediate. !00s of my patients and friends pray for my health daily. I am deeply moved and touched. But I don’t expect miracles, but I can hope
I could go on. When faced with an ” incurable cancer”, it is natural and I would argue healthy to search for alternative options.
My counsel is two-fold. Don’t rely on diet or a supplement to cure you. And don’t do anything that might hurt you. Or costs a fortune.
Eating an organic vegan diet ( with a B12 kicker) is a healthy lifestyle, but it is no substitute for FCR if that’s what you need. If mediation and prayer calm your troubled soul and give you hope, go for it. It sure helps me.
A healthy life style is a great asset. This is a tough fight and we all need our strength.
Be well
Brian
Lynne,
Found your Dr. Terry Hamblin. He is not well himself, but still semds info.
Chaya–thank you for all you do! This website has been incredibly helpful. I absolutely appreciate your efforts, your ethics, and your beliefs. Keep up the great work.
My mother just had her first flow cytometry. Her results look just like mine. She’s W&W.
Chaya
If i havnt said it already since finding your site since diagnosis in August i will say a BIG THANKYOU again.
I love the feedback & input from all who take the time to share experiences of CLL.
Dave
Chaya,
thank you for your careful review of evidence and honesty. I am in my first set of FCR. Your site helped me realize that it was not going to be easy but that it was what I needed to do. During W and W I have tried complimentary methods under the direction of a solid Naturopathy physician and with the support of my medical oncologist and clearly it help me in some ways but they were clear that the tools are not there to stop or put it into remission. So I am very careful to never try to substitute something with anecdotal evidence and some clinical data for the evidence we have about FCR and other methods of treatment using chemo. You really helped me understand that the reaction to chemo is very individual and it can be very arduous. Again thank you for being honest, careful, and sticking with this work.
Jerry
I have found that most research on the after effects of Chernobyl relate to childhood leukemia, and little to none on adult leukemias, with the exception of the workers directly involved in the clean up. I so far have not found any articles that directly address CLL, or the Jewish, CLL, and Chernobyl connection if there may be one. Does radiation even cause CLL? I will read the earlier article you have referred to, Chaya. Thanks!
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