I am 72 and was diagnosed with CLL when I was 68. Almost everyone who gets CLL is in the upper sixties or older. Why do you think that CLL is an older-people's disease?
(By the way, I just came up with a new possible explanation which I'll share if others respond.)
I was 47 and I have a relative that was 44.
Also, we are both female.
I’m 37 and have no idea why I have this (just super lucky I guess). I’ve found a decent number of people in my age group on the internet (this site and others), so it happens, but yes the predominant cll having person is older. I’m also curious as to whats behind the age preference of this disease.
It’s a good question and research doesn’t give easy answers. In fact it seems that CLL is a bit of an enigma because causation isn’t easily identified although there does seem to be some link between familial risk and past exposure to certain chemicals/radiation.
I was 54 at diagnosis and female. I’d clearly had either CLL or MBL for some years preceding my diagnosis (blood results had been plotted for other reasons) and there is no history of leukaemia of any kind in my family. I had no history of chemical exposure but I can point to an excess of X-Rays in my teens and 20/30’s due to an over zealous GP.
Apparently 70% of all leukaemia cases occur in people over the age of 60. In simple terms, it might be too easy to theorise that the passing years simply give increasing opportunity for the production of blood cells by the bone marrow to become corrupted and the DNA to change. There’s some theories that diet plays a part, especially one low in certain nutrients and we know that CLL is significantly reduced in certain Asian countries. Worn out, distorted, allowed to proliferate without means to stop it. However, that doesn’t explain the much younger CLL’ers and we’ve had patients in their 20’s on this site. Rare but it happens.
Maybe the reasons for developing CLL are as heterogenous as CLL itself. In my case I can plot stress, systemic inflammation and co-morbidities that may have contributed. Harder for the past fit, athletic CLL’ers to accept this however 🤔
What’s your theory Howard?
Newdawn
Well, you could look at it the other way! We make about 100 BILLION white blood cells A DAY. It is quite a feat that the bone marrow manufacturing templates are that good that almost all follow the correct design (OK those way off might be detected as foreign bodies and are then eliminated by other whites).
Human businesses have come no-where near this level of manufacturing excellence going on in every human body!
It is not surprising things do go astray - so perhaps it is just chance. (And that CLL cells are so close to design tolerance that other whites cannot detect them)
Hi, I was 51 at diagnosis, however my father was 82 and he was in hospital for a hip replacement when the CLL was detected. He died last year at the age of 93. We both had the same consultant...
Newdawn,
My guess is that CLL is the result of deficiencies of nutrients whose concentrations or availability tend to decrease with age. The idea is that those nutrients, if they were present, would help the body fight off CLL. A similar argument has been given to explain why flu season occurs in the winter:
1. Exposure to sun allows people's bodies to manufacture Vitamin D.
2. Flu mainly attacks people during the months when they don't get much sun.
3. Therefore, flu in the winter may be partly due to Vitamin D deficiencies.
My current guesses as to CLL-related nutrients that decrease with age are:
1. Glutathione - see forbes.com/health/body/what...
2. SODs - see onlinelibrary.wiley.com/doi...
I got this idea on a different thread while discussing the possibility that EGCG and/or Curcumin (Turmeric) combined with NAC could possibly help fight CLL. See healthunlocked.com/cllsuppo...
Amazing that you are suggesting you know the answer that clinicians and haematologists haven’t been able to answer. Excuse my cynicism about your faith in turmeric.
Colette
Mrsjsmith,
If you are at the "watch and worry" stage of CLL, you may be making a mistake if you are dismissing the possibility that Turmeric could help you. It's main active ingredient (Curcumin) has been found to be somewhat successful at killing CLL cells both in the test tube and also with some human subjects (when 1 gram was taken with breakfast and 1 gram with supper). See Curcumin in chronic lymphocytic leukemia – A review (2017): sciencedirect.com/science/a...
It’s and interesting theory Howard amongst many. I’ve also heard it theorised that B12 deficiency can affect the bone marrow and trigger troubling changes.
It’s a highly complex subject but the important thing is not to assume that any supplement could be a panacea of all ills. However, we all need to do what we feel can help us individually.
Just as an aside, as this thread contains quite personal information, it might be advisable to lock the post to this community.
Newdawn
Newdawn,
Thank you for the suggestion of another possible candidate! B12 availability is indeed age-related. See Age-Related Changes in Cobalamin (Vitamin B12) Handling: link.springer.com/article/1...
I wonder about the significance of B12. Mine is unusually high, i.e. outside normal range, and I read there is a correlation between high B12 and poor survival with cancer.
just another theory.
The most common cause researchers mention is benzene and chemicals. I believe that caused mine due to accumulation of toxins from considerable exposure. I have eaten well. As no arthritis. Bone or digestion problems and i look 20 years younger for my age. But i was stuck in traffic fumes for several years daily and for several years, used spray glue a lot for a few years working my way through college. And other artist's chemicals. And used dark hair dye (which researchers also mention as suspected cause) as some gray hair appeared. Not good for getting work. Am 78. Still work part time. Am on venatoclax and was on acalabrut and other drugs since age 72 when cll was diagnosed at stage 4. Main side effect afib -- no vomiting. No digestive problems or cramps. Bouts of extreme fatigue but onc says it is from something else. But some afib still
Yep. I was 54.
I was 52.Mine hereditary.
A lot of the people responding here got CLL when they were on the young side. Both case studies of complete recovery from CLL featured people who were on the young side when they were diagnosed:
1. ncbi.nlm.nih.gov/pmc/articl... [Note: AussieNeil does not consider this to be a complete recovery. See his posts below.]
2. amazon.com/Harvard-Document...
Perhaps they were deficient in only one of the age-related nutrients. When they supplemented their diet with something which enhanced that particular nutrient, all of the other needed nutrients were already present in their bodies, so they began to recover.
Hi Howard,
Have you mistakenly included an incorrect reference for your first case? This "Patient's condition is described as stable and indolent." (Figure 1) and they had a WBC of 110 at the end of the study period (Figure 3). That's not a "complete recovery from CLL", just a patient that fits within the approximately 30% group of those with CLL who never need treatment.
Overlooked is that case study 2 had a splenectomy to reduce their tumour burden. (Splenectomies were a recommended treatment by M D Anderson back before we had FCR treatment, after mouse studies showed that they improved progression free survival). They were also IGHV mutated, so were also likely to be in the 30% group. This person also gave very high priority to keeping very fit, even during treatment. My observation when reading mention of this case study is that everyone notes the dietary interventions while completely ignoring the exercise component of this case study - just has you have done. There's way more evidence for exercise slowing and even reversing cancer progression (including for CLL) than there is for dietary interventions. Unfortunately, pretty well everyone ignores the fitness component, because it takes way more time investment than taking a supplement.
Keep in mind that case studies are written to bring attention to unusual medical situations, but even so, there's around a 1% incidence of spontaneous remission in CLL. With a bit of research, you can find case studies for over 30 people with CLL who have experienced spontaneous remissions. Of note, only one of those cases was in someone who was IGHV unmutated, which makes me wonder if the testing was accurate or borderline.
I've included a copy of the Levels of evidence pyramid academicguides.waldenu.edu/... , which shows that case studies are way down the pyramid, fitting in the 'Unfiltered Information' category.
Neil
Neil,
You didn't answer my question. Why do you think CLL is mostly a disease of older people? We've had several hypotheses put forward here:
1. Newdawn hypothesizes that it could be partly due to past exposure to certain chemicals and/or radiation.*
2. Newdawn also hypothesizes that it could be partly due to DNA changes in the bone marrow that take place gradually over the years.*
3. Newdawn also hypothesis that diet could play a part, especially when low in certain nutrients.*
4. Ironjohn hypothesizes that it actually begins earlier, but often goes undiagnosed for years prior to presenting with symptoms.
5. Panz and CillDaraAbu share the hypothesis that heredity often plays a large part.
6. I share Newdawn's hypothesis that nutritional deficiencies could play a part, but I add that the nutrients involved are likely ones that tend to decline with age.
* Note: Newdawn does not consider this to be a clear summary of her position. See her posts below.
Just to clarify Howard. I said that it is hypothesised that these factors play a part in the development of CLL. My hypothesis (in my own case) is actually stress, systemic inflammation and other Co-morbidities. I’m however open to the prospect of many multi-faceted reasons including some nutritional deficiencies but not as a total reason.
Regards,
Newdawn
Newdawn,
By the way, stress can aggravate and even cause nutritional deficiencies because it interferes with your digestion. Here's a quote from this website: avogel.co.uk/health/stress-...
"Stress can have a number of physical effects on the body: it can slow down your digestive processes, increase inflammation and inhibit your sleep patterns. What most people don’t realise though, is that stress can also affect how you absorb and store certain nutrients leading to a whole host of additional unpleasant symptoms such as fatigue, low mood and muscle pain. That’s why today I’m going to take a look at how stress can deplete your stores of nutrients, which nutrients are most commonly affected and how you can go about boosting your intake of these."
Howard, it's not me that's saying the first case study subject is not a case of a complete recovery, the case study itself states the patient was "stable and indolent"!
And I was 55
I am female, and was 42 when diagnosed and had clear symptoms (enlarged lymph nodes) from the age of 35. I only had flu once as a child.
This is just my opinion, I think people have undiagnosed CLL/SLL for years prior to presenting with symptoms. I was 46 when I was diagnosed. I had no symptoms nor do I at this point 5 years later. I was diagnosed by chance with diverticulitis and they seen 2 abdomen lymph nodes slightly enlarged. A biopsy was done and it came back that I have SLL. My CLL specialist said John I wish you never had the biopsy done, because now we have to keep an eye on it. He went onto say I may have taken 20 or more years to present with symptoms if ever.
My take away from his statement was just what he said and it may be the same in your case. You may have had it for 20 years and now you may have presented with symptoms with this conclusion.
Best wishes
John
And I was 53.
57 here.
I was 43 and because my white cell count was low my doctor thought I had an infection. I had cll for a while before.My dad died of cll in 1968. He was 45 and had cll diagnosed 3 years before. He had symptoms for at least a year before. He was brought up in a childrens home and lack of nutrients is likely. I have always had a healthy diet and we likely had cll at the same age.
I was 10 when he died and have health problems that he didnt. Anne
I was 43yrs old when the lymph node popped out my neck & waved. I had different abnormal blood tests prior & was urged to see a specialist but my life was way too busy for that years earlier. I was symptomatic at 42 & they tested me for a year saying, nah you are strong as an Ox it must be in your head. I have always been hyperactive & my kids were diagnosed with ADHD so the chemical deficiencies hypothesis seem right for mine. Also I worked at the Brooklyn VAMC where I was directly exposed to Agent Orange 🍊 Plus My Grandfather was part of the Tuskegee Experiment & My Mom took DES so yeah deficiencies & exposure 🤦🏽♀️
Given the increasing prevalence of Monoclonal B Cell Lymphocytosis (MBL) with age (~45% in those 90+) , and the observation that Low Count (LC) MBL preceded CLL diagnosis by more than 8 years, and individuals with LC-MBL progressed to CLL at a rate of 1.1%/year, the question is perhaps better asked as to why more don't get CLL.ashpublications.org/blood/a...
So I agree with ironjohn ; when you allow for around a decade with undetected MBL then maybe a similar amount of time with CLL going undetected, it just takes time to become diagnosed.
Neil
PS I'd appreciate you using the "More v".. Edit option to correct your statement about the indolent case of CLL which you considered incorrectly as a cure. The slow progression in that case study - not a cure, most likely would have happened irrespective of any interventions taken by that woman.
Neil,
Thank you for answering the question. You basically agree with IronJohn.
It is definitely considered an older person’s disease, but I was 44 at diagnosis, probably younger when it started. Knowing why it happens would be a good step forward.
I was 56 , no symptoms, normal WBC at a Stage 4 diagnosis. Probably had it years but no symptoms and annual bloods were normal until my diagnosis which was a caught on annual medical
I was 68 when I was diagnosed purely by chance. I had a raised lymph node which came up after travel vaccinations. I thankfully haven't felt ill although my consultant says that without the Acalabrutinib, I would have eventually started to suffer effects from the anemia. The worst thing for me is the lack of an immune system which works. I can live with that.
Diagnosed at 72. It seems odd to me that lifetime dietary issues could be involved. A massive proportion of people have poor diets and serious weight issues, yet don't contract CLL. We are a tiny community and so appear to have a specific issue with something. As a trainee horticulturalist I worked with many chemicals including Agen Orange, yet I see no evidence that older gardeners have higher than normal CLL rates. I have also exercised hard for nearly 50 years but still have CLL. I harbour serious doubts about supplements - yet another modern day fad. I had a very poor childhood, very little good food and serious stress, and that did me no good. I had various issues with swollen lymph nodes due to infected well water, and reactions to penicillin at that time.
This said, even with CLL I feel fine and keep fit - life is good.
A lot of us have not had any previous symptoms but CLL was discovered as a result of other comorbities. In my case I had an umbilical hernia operation where they took some blood for testing pre-operation. As older people are more likely to have other things wrong with them for which blood is taken & analysed this could well be part of of the answer.
I'm surprised that so many people on this forum (including Ironjohn, AussieNeil and you) hold the hypothesis that CLL first begins before people are older, but doesn't get discovered until people are older.
I think a lot of people are diagnosed as a result of another illness, and it was incidental finding. Husband was in the hospital for intense, abdominal pains they could not find the cause for so they did abdominal and pelvic CT scan and found multiple nodules. It turned out the pain was caused by internal shingles that had not yet appeared on the skin by the next day there was a band around his waist of stinging red rash. He was referred for further work up and diagnosed with CLL.
I believe that hypothesis is well founded, and I will explain why below.
49 at diagnosis , treated the next year then relapsed 6 years later . Not that old!
Diagnosed at 52 but doctors believe I have had it much longer.
I was 40 and working as a Firefighter, had a serious exposure to formaldehyde earlier in that year I was diagnosed with a slightly high wb count a few months later, always wonder if that was the trigger. 71 now and 24 days till I'm finished the current O&V treatments.
Jerry
Diagnosed in my mid 20's so....
Howard, this post I did many moons ago touches on my feelings on this subject;
healthunlocked.com/cllsuppo...
This is an older article too but I feel still has some traction in terms of possible causation;
apa.org/monitor/2008/10/str...
This is an extract from the linked article;
'The heightened inflammatory response caused by stress can lead to much graver consequences than itchy eyes. In fact, it can age the immune system, leading to cardiovascular disease, cancer, periodontal disease and frailty, according to research by Kiecolt-Glaser, published in the 2003 Proceedings of the National Academy of Sciences (Vol. 100, No. 15).
In the study, Kiecolt-Glaser and her colleagues followed 225 participants over six years and tested their blood for interleukin-6 (IL-6), a "messenger" protein that promotes cells' inflammatory response. They found that as people age, they produce more IL-6, but that increase is especially pronounced in people who are caring for an ailing spouse.
"Stress made 55-year-olds have 90-year-old immune systems," she said.'
Newdawn
I'm beginning to think that you are like a detective in a "who done it". At this point, you have a lot of suspects, but don't know which one or which combination did it. You strongly suspect the stress hypothesis. but are weighing the evidence about the others as well.
I am especially interested in your thinking regarding the nutritional deficiency hypothesis because that is the hypothesis that I'm exploring. In your original post you wrote: "There’s some theories that diet plays a part, especially one low in certain nutrients and we know that CLL is significantly reduced in certain Asian countries." Do you have any guesses regarding the beneficial nutrients that are more often consumed as part of the diet in these Asian countries?
By any chance, were you suspecting turmeric? I found this quote online: "The reported consumption of turmeric in Asian countries in humans is in the range of 200–1000 mg/day (Thimmayamma, Rau, and Radhaiah 1983; Polasa et al. 1991)" - ncbi.nlm.nih.gov/books/NBK9....
My ‘detective work’ has been primarily exploring my own possible causative factors Howard because as the many replies here demonstrate, it’s too multi faceted and complex to attribute one cause to the development of CLL. To some extent your hypothesis fell at the first hurdle because you started with the premise that most CLL’ers are over 60 and that there is some definable nutritional deficiency which over time contributes to the development of CLL. The many responders under 50 challenge that hypothesis as do the people who have a strong familial predisposition and those who have been exposed to chemicals with a carcinogenic profile.
As yet I’m not totally convinced about the age related nutritional deficiency theory as a defining causation but would never dismiss the possibility of some impact in some people.
Newdawn
Newdawn,
Thank you for leaving room for my hypothesis as to be possibly applicable in certain cases. But I haven't given up my hypothesis as possibly being the norm just because genetic predisposition and younger age onset exist:
1. Genetic predisposition. The genetic predisposition could be a predisposition for a particular nutrient to become less available than normal.
2. Younger age onset. This could be due to some people getting an age-related nutritional deficiency at a younger age than normal.
Hi Newdawn , i am beginning to believe it is more stress related and how our immune system handles the stress ; physical ie; from disease or infection or mental/emotional combined .i was diagnosed 2 1/2 years ago ----1 year after the worst flu episode i had ever had in my life and 2 years after my wife's second brain surgery and along with everything else in day to day living in this crazy world ... i am sure my body would have handled both events better if i had been younger . in Glen Sabins book the N of 1 i think it was about 10 years after he had his spleen removed and was using natural remedies , and at that point he was in remission . He went through a very stressful time in his life and his CLL came back again soooo... ??? .fortunately he reduced his stress level and aggressively worked at getting back into remission ----- .i will be 75 next month and am doing well on my current treatment of O&V after a calquence fail episode .. hope you are doing well also ... thanks for all your balanced, helpful input to this great forum .. God bless ! james
I was 54 but had been monitored for 4 years prior as routine bloodwork showed slightly elevated wbc. When under arm lymph nodes enlarged and wbc reached 35000 I was diagnosed. That was in 1998. Due to lack of cll knowledge in those days, I was immediately treated with a mild treatment called pulse dosing of chlorambucil and prednisone in which I took if I remember correctly 6 mg of chlorambucil and 100 mg prednisone for the first 4 days of the month for 4 months. Wbc decreased to 17000 and I went on with my life. Of course today I wouldn’t be treated at all and would just be in watch and wait. I finally had to start treatment with Zanubrutinib in May of this year. I personally think CLL is the result of many different causes as there are many variations of this disease. I had mono in college and after that my immune system totally changed. After every cold or virus it seemed I got an infection and had to take numerous antibiotics over the years. I even had a bad case of shingles at age 39 and a basal skin cancer at 38. Then after a violent criminal attack of a family member who I was the caregiver of my bloodwork began to change and I was monitored and then later diagnosed.
If these are available, I'd love to see updated statistics/epidemiology on the age CLL is officially (via flow cytometry, for example) diagnosed--best if published in last 2-3 years. I, along with many people responding to just this post alone, was not "70 and male" when I was diagnosed.
Hi Chi-town_Girl,
The ACS journal article Howard quoted from in his earlier reply to you healthunlocked.com/cllsuppo... looks to have been taken from the US Surveillance, Epidemiology, and End Results (SEER) Program. seer.cancer.gov/statfacts/h... I consider that to be the best reference of long term data on CLL diagnosis and survival, though the UK has a similar reporting system.
Note the attached plot of the age groups when CLL is diagnosed, with 0.2% between 20 and 34 and 1.6% between 35 and 44 and 7.7% between 45 and 54. The age at diagnosis has slowly trended down over the last decade or so. It used to be around 72, but the increased use of regular blood testing, particularly prior to surgery, is, I think, the main reason for this slight trend towards an earlier age at diagnosis. That's yet another indication that the CLL is commonly present, but undiagnosed for a while before eventual diagnosis.
Neil
Yeah but...
I was diagnosed at 63. Quite late, started treatment 5 months after diagnosis. Lymph nodes had been swollen for about 10 months at diagnosis.
I definitely had it when I was 60. I'm fairly sure I had it when I was 56 as I was having lots of short but feverish illnesses. I may well have had it when it when I was 53.
So I've probably already used 10 years of the life expectancy but the medics count from diagnosis or start of treatment.
Atypical, IGHV unmutated, ATM del, SF3B1 mutated. Supposed to be quite "aggressive".
I was diagnosed at 74, but I probably developed CLL 10 years earlier because my blood was declined when I gave a routine blood donation. They said I had Hep C, but a follow-up more sensitive test came back Negative - the first test was a false Positive. That being said, the blood bank said I could no longer donate blood. Of course, with CLL I can no longer donate blood anyway.
Chi-town_Girl:
Does this help? It's four years old: acsjournals.onlinelibrary.w...
"The incidence and prevalence of chronic lymphocytic leukemia (CLL) continues to rise in the United States, with an estimated 20,720 new cases diagnosed and an estimated 3930 deaths from CLL in 2019. CLL continues to be the most common adult leukemia in the Western world. Based on data from 2013 through 2015, approximately 0.6% of men and women will be diagnosed with CLL at some point during their lifetime. The risk is slightly higher in men than in women, and the average age at the time of diagnosis is 70 years. The incidence is highest among non-Hispanic whites and lowest among Asian and Pacific Islander populations. In general, there is an increased rate of detecting early stage CLL, who, if asymptomatic, can be closely monitored using a wait-and-watch approach outside of clinical trials."
I was diagnosed at 34 years old......
Jammin_Me,
I'm sorry. I haven't meant to be condescending. I have been responding to almost every post in order to show people that I am valuing what they had to say.
As far as my treatment of administrators go, AussieNeal and I go back quite a ways on this website and in every one of our discussions, I have learned something about the CLL research from him! As far as NewDawn goes, I certainly haven't meant to be insulting or condescending; in fact, I have found all of her posts in this thread to be helpful and thoughtful.
You might have thought that my post about her being a detective in a whodunnit was condescending, but I was actually trying to show her that I had just read her earlier post which she had linked-to in one of her replies to me. She had began that older post, "I've not specifically been looking for a 'why CLL' answer but have a general interest in health research anyway. I'm no expert but what I have found is that it's like reading a 'whodunnit'..."
However, you have pegged me correctly in that I enjoy discussions, partly because I learn from them. I have already learned from this thread that more young people than I thought get CLL, that CLL seems to run in some families, that some Asian cultures may be less inclined to CLL because of their diets, that B12 is an age-related nutrient whose deficiency I was not considering, and that other people have been considering very different hypotheses about why CLL tends to be correlated with age.
My goal in all my postings on this website has been to try to learn things that might help me stay as healthy as possible and to share with others when I think that I have learned something valuable that might help them stay as healthy as possible.
I was diagnosed at 52, but based on prior blood tests I probably had it since 49.
I’ve not found Howard’s responses to me condescending Jammin and you’re right in saying he’d pretty soon know if I had! 😉
Howard is a man on a mission and clearly feels passionately about this subject. Sometimes the pursuit for confirmation of a belief can become consuming. I think this community understand that even if they don’t necessarily share his hypothesis. There has been a willingness to share and Howard admits he’s learned from the diverse responses.
All is well on the CLL forum…well apart from my rotten earache 🫨
Newdawn
We are told that CLL is an indolent (slowly progressing) type of leukaemia. But we also know that CLL is a heterogeneous disease, and some patients have a much less indolent version than others. One thing we can be fairly sure of: by the time we are diagnosed - whether through symptoms emerging or through a routine blood test- we have had CLL for more than a decade. So if you were Dx in your fifties, you "got" your CLL in your forties, thirties, twenties, teens, as a child, or at birth. If this is true, it means that CLL is not an old person's disease, just that the majority of CLL patients are diagnosed in later years.
Whaaaaat? I hear you say, loudly. How do you know this stuff, where's the evidence?
Good question. Evidence, hmm, not really, but stay with me. As with all spreadsheets there are one or two assumptions. The main ones here are that for an individual patient CLL established with a single cell which clonally expanded at a constant rate over time.
So you might have a really aggressive form of CLL, such that your lymphocyte doubling time is just a few months, and an ALC of 5 × 10^9 at Dx would increase to 250 x 10^9 inside 3 years, were you not already in treatment. Given the above assumptions, you might be surprised to know that you first "got" your aggressive CLL 13 years before diagnosis.
Someone like me, with a pretty constant lymphocyte doubling time of 2.5 years throughout watch and wait, is presented with the prospect of having been born with the CLL mutation. Which raises another question of course... But I submit, my particular version of CLL, though it became evident when I was 55, is by no means a disease of the elderly or even the middle aged.
Direct evidence for the precise time at which CLL started in any individual is not available, because as yet we lack the technology to detect CLL cell concentrations lower than 1 in 10^6 leukocytes. There is indirect evidence in family histories that around 10 % of CLL is inherited. We don't know if this number is steady, increasing, or decreasing, but we do know of a mechanism whereby somatic mutations in the developing foetus can sometimes get into germline cells, to be passed on to subsequent generations.
Hello HowardR
In my case I was mister average CLLer, 70-year-old male when diagnosed. I had a complete blood workup 6 months before diagnose without any sign of CLL. I did however have nuclear stress test 6 months before CLL diagnose. Unfortunately stress test was waste of time. I was however exposed to radiation during uranium mining and nuclear bomb testing, during the early 1950s.
I don't think any of my issues above explains why average CLLer is 70 years old. I think that AussieNeil's exercise answer is closest as all people slow down in physical activity as they age. We may never know.
hi Howard. Three of my aunties and uncles got blood cancers in their 30s, but in this generation there are two of us who presented at 58. Looking back I know I had MBL probably at least ten years before my diagnosis, and cll four years before my diagnosis.
Pretty certain mine is genetic with some kind of trigger. Although pancreatitis triggered my CLL (although no one noticed at the time!) , I can now see that as far back as ten years before I had indicators that are linked with a high risk of cancer. At the time those indicators were not known to be associated with such a high risk of cancer.
I had a very raised ESR, and RDW in 2011, I also found it very difficult to maintain my haemoglobin. People assigned the high esr to viruses although I knew I hadn’t had any!
I had occasional arrythmias and multiple bouts of shingles up to 10 years before that! I used to think I was the exception to the rule, getting shingles without immunosuppression since my thirties!
I started to get very allergic reactions to mosquitos around the age of 30, and often got cellulitis. I got kidney infections within 24 hrs of urine infections.
I just thought I was a bit odd, with “hypersensitive skin” etc. clearly I haven’t had perfect white cells for a long time! I was very fit and never ill otherwise.
My courses of hep B vaccine multiple times never worked.
All of these things are recognised in CLL in occasional research papers.
So I think I was on the way to CLL at a very young age except that no one then had the mechanisms to find it. In fact, even with my family history I never imagined I would get it, and it took 4 years to diagnose even with overt blood tests showing high lymphocytes, monoclonal and smudge cells! All were said to be due to my pancreatitis!
So hearing the theories from iron man and Neil, I kind of agree with them! I think once there’s an algorithm to pick up diseases like shingles, sepsis, pyelonephritis, cellulitis at an early age, plus blood tests like raised crp, esr, and RDW that are linked to a high risk of cancer we are unlikely to get the age of average diagnosis at an earlier age.
Very interesting discussion though.
Thanks. Not something I usually suffer with Jammin but I know I don’t like them! ☹️
Newdawn
I was diagnosed at 37 but had been dealing with enlarged lymph nodes since I was 33. I will be 64 next month and was in W&W for a little over 21 years before starting treatment in 2018.
amen So boring
Which is why I said ‘understand’ as opposed to ‘accept’. I can understand a person’s need to pursue something they’ve become invested in even if I think they are flawed. We’ve posted our challenges using the experience, logic and research we have at our individual disposal. Nobody can definitively demonstrate whether they are right or wrong. Do any of us know beyond any doubt how, why or when CLL develops? It’s just another theory and he’s asked for yours. Yes I think Howard may have leapt too high and landed too hard onto this particular theory and we’ve told him that. Hopefully respectfully. If he suggests his nutritional supplement as an alternative to scientifically proven treatment then it starts to break the rules.
Howard is a patient as we all are. He’s throwing it out there and we have the right to throw it back out as it lands but I’m prepared to listen because I don’t have all the answers and he may just be on to something. Or not!
Newdawn
Most (not all) cancers are more common in older individuals. My immunologist friend tells me this is because a healthy immune system will spot and destroy DNA-damaged cells that might otherwise become cancerous. But the immune system naturally weakens as we get older, making it easier for those cells to escape notice.
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