Couldn't sleep last night so I had a lot running through my head. I was diagnosed on March 24 2014 with CLL. I am now WW stage 0. I am wondering how long I had this before my diagnosis ..I suppose that there is no way of knowing but I remember the Dr saying that I probably had this for a while??? Did you ever wonder?
Maria
Hi Maria,
I'm sure we all wonder this - I know I did. Obviously, unless you had a flow cytometry test years before and it proved negative, you really can't be sure of when you didn't have CLL. If you have had any blood tests prior to your diagnosis, ask for a copy and check if your lymphocyte count was above the normal range as that is one indication (but it could also be due to an illness at the time). Doctors rarely comment on out of normal lymphocyte count results for this very reason and some members have even found out that for many years their doctor was aware of their raised lymphocyte count, but had been quietly monitoring it without informing them!
Other tell tale signs could be the onset of greater than usual fatigue, night sweats, more frequent or longer lasting illnesses or even raised lump(s) - lymph node(s) that never went down.
When I was diagnosed, my GP did check back through my blood test results and found one that indicated I probably had SLL at least 2.5 years before my official CLL/SLL diagnosis. I also had a lump on my thigh that I asked about probably 4 or 5 years before my diagnosis that my haematologist says is a swollen lymph node. My GP dismissed it as a harmless cyst at the time. I'd also experienced occasional night sweats that I'd put down to stress. Going back 10 years before diagnosis, I began finding it a real struggle to get through afternoons due to tiredness, so I suspect I could have been developing CLL for upwards of 10 years before my eventual diagnosis.
I don't consider wondering about when our CLL started to be idle and useless speculation. If we can identify some of these significant indicators happening years before our diagnosis, it can be a very reassuring indication that we probably have a slowly progressing version of CLL, particularly if we are diagnosed at an advanced stage!
Neil
Hi Maria
I suspect we all wonder. My GP was able to confirm that I had an elevated count 3 years before diagnosis but put it down to a probable unidentified minor infection.
I suspect that is a common happening.
Bubnjay1
I had a blood test 6 years before diagnosis which, with hindsight, indicates CLL was just present.
I often wonder, my counts were normal & had been normal for years prior. My enlarged lymphs were found in CT scan done for appendicities. I got a 2 for the price of one diagnosis.
I wonder myself when it could have started. I look back and try to remember how I felt or if I had symptoms. It's hard to say. At 48 I feel like one of the young ones in the group to have CLL but I'm starting to see more people my age and younger with CLL. I'm on W&W stage2.
BC
I've wondered the same thing. I know my WBC and lymphs were elevated a year before diagnosis - attributed to an infection at the time - but I hadn't had a CBC for a while prior to that. The counts had gone up only a bit from last year to diagnosis, and my doctor took that as a good sign.
Maria
I think we all wonder! For me, a routine blood donation picked up lack of red blood cell and that led to diagnosis (of both CLL and AIHA complication, the AIHA causing the lack of haemoglobin). No previous blood donation had been a problem, so things were not bad enough before. But that did not mean I did not have it......indeed, I remember as a child (c 10 - 12) having slightly 'yellow' eyes at times - friends commented (was this jaundice from the AIHA even then??????). Who knows, but I do wonder!
Diagnosed January 2013. Previous blood test from 2008 showed a WBC of 15 (family doc never told me). My hematologist thinks it started about 3 years before that but no way to really tell. At any rate I am still at Stage 0 so remember this can be a VERY slow disease so try not to worry and enjoy life (I know that is easier said than done).
I have the same wonder. I am 61 and was always dubbed a sickly baby by my parents and grandparents. In 1990 a routine blood test showed that I was anemic. I was told to get more iron – no further testing. Then in 2011, I developed a swollen lymph-node in my neck and was diagnosed with CLL which quickly went from stage 0 to 3 and turned into SLL. At the same time when my neck was being examined the doctor spotted a lump on my thyroid which turned out to be papillary cancer. My thyroid was removed and I was treated with radioactive iodine. My Aunt on my mother's side of the family is 95 and was diagnosed with CLL in her sixties. In her case it has always been wait and watch.
Since I have been in a Phase 1 drug trial for ACP-196 I have gone from drinking coffee non-stop to three cups a day. My blood tests after 10 months indicated that my hemoglobin and hematocrit are in the normal range. I keep wondering if this is the first time in my life that they have been normal. Have I been compensating for my anemia by drinking coffee in excess? I have struggled with sinuses all my whole life. Since I have been on ACP-196 my sinus problems have disappeared. My present thought is that CLL has been lurking in the background my whole life.
Wonderful story... there was a school of thought a few years ago that suggested that CLL genetic damage might occur in childhood... another group think that CMV or EBV
mononucleosis , usually in early teens, plays a roll...
Just theories...
~chris
Dear Chris:
I was an Army brat and when we were kids (age6) we would play kickball in the street after dinner. When the DDT truck would come by to spray the street, we would run after it and get drenched. I was usually in the front since I could run the fastest. I believe that contributed to my CLL.
Since I am half-Japanese and half-German, my research shows that until the Japanese Fukushima Daiichi nuclear disaster (2012), leukemia was not a cancer that Japanese people got.
Just some thoughts.
La Verne
Hi La Verne
How I remember the taste of that DDT spray, and the blue fog that enveloped the road ditches...
On the Fukushima Daiichi risk, leukemia is a big group and some types have increase risk... but the Chernobyl study specifically found increases in CLL... among cleanup workers...
WHO study...
apps.who.int/iris/bitstream...
Chernobyl UCSF
ucsf.edu/news/2012/11/13087...
Takes years post facto to get data on CLL, because it moves so slowly...
~chris
La Verne, I can't believe that you are talking about the DDT truck spraying the street and trees. We would stand there and let it rain on top of us thinking nothing of it! There was a loud speaker stating that they were coming through and there was no danger to us. How wrong they were. We were just kids and thought it was fun. I have no doubt that this had a lot to do with the illnesses that I have had through the years. I truly appreciate your input. It if the first time I have ever heard my same fears from someone else. Thank you.
La Verne,
Like you the DDT experience as a child comes back to me, one has to wonder.
Cheers
Lorraine
Dear chris, meemsdream and Rex12:
Look at all the guys who fought in Viet Nam who were exposed to Agent Orange. The government recognizes that particular experience as a direct connection to leukemia. I am convinced my exposure to DDT as a child had a major role in my diagnosis of CLL as an adult.
The VA only recognises an associated increased risk of AO and CLL/SLL, not a causation...
DDT has never been linked to blood cancers but there are studies showing a risk of pancreatic, liver, testicular and breast cancer.
A major study in Europe recently did find a relative risk in CLL among lifelong agricultural workers and farmers with exposure to organophosphates...
This study from the Mayo Clinic last year looked at a very large population of CLL patients, and I can tell you ...if you are a tall, hairdresser with allergies, living on a farm, enjoys sunbathing and who smokes... you are at some higher risk for CLL... 
Mayo study
hi I found out in January of this year but it was detected in a blood test 02/09/2009 but my Dr didn't follow up on my blood test, im on W& W I have enlarged spleen enlarged nodes all over my body and its in my bone marrow , but im ok still working had a few infections that hang on, tired by the afternoon have hot sweats on and off but im better than others so im lucky . I dont understand allot of it, I know from looking at my paper work mine is 11-q ????? I find it hard to understand I have cancer and they are not treating it ,don't sleep very well and find it hard to talk about my wait and Worry , I hope you find it easier .you have found the right place for answers , good luck
A really interesting question Maria and judging by the replies one that a lot of us have mused over. I had ITP 3 years before being diagnosed with CLL. Had bone marrow biopsy at the time and then 3 monthly blood tests. No sign of CLL at all BUT something was up making my immune system destroy my platelets. who knows but the more we know about how we all got here the better. Thanks.
I wonder also how long I've had SLL, on diagnosis the Haematologist said he thought I'd had it for "some time", but didn't say how long, and I never thought to ask, probably in shock at the time
I was also diagnosed after being sent for a scan for suspected Gallstones, which was confirmed, so I too got 2 conditions for the price of 1.
Elle
Thank you all for your answers and comments to my question. I guess it doesn't have an answer but a lot of good info on what all of you have experienced. I hope someday we will have some way of detecting CLL at its earliest stage or better yet, detecting it before it occurs! For right now I am just happy to be in a group of people that do not think any question is silly and encourage each other to move forward and welcome everyone with open arms.
Maria
I did wonder briefly at the time of diagnosis but there are several possible contributing factors, non of which could be proven and all, some or none of them could be relevant. Consequently I gave up wondering pretty quickly.
I had a road accident in December 2001 and was in hospital for more than two weeks. I remember the consultant telling me I needed to see my GP on release to check my blood results, but I thought nothing of it and did nothing. It was some time later (can't remember how much later- a couple of years I should think) that I saw my GP about 'lumps' in my neck.
I have assumed the shock of losing our 19 year old son in 1993 started the whole thing off, but looking back there have been several periods when I felt much more tired than I let on.
Good subject for discussion!
I never leave an office without copies of all my blood work and tests. The same goes for hospital stays. It boggles my mind to see how many patients are not told by their Drs. that something is off. Last month I had a friend that finally got her records and found out she had very low vit D. She had no idea and was really upset. She is going to a new Dr. and is now on high dose Vit D. I hear this a lot. So much depends on early diagnoses for so many illnesses. I say shame on some of these Drs.
Maria
Greenblue - You are the second person who has posted, I think the other one was on this site also, that you were "sickly" from a very young age. I know that infections were an issue for me all of my life. As I became old enough to be aware of it I blamed it on overdoing in high school and college, then on the fact that teachers spend our lives in a sea of germs at work. It makes me wonder how that played into ending up with this diagnosis.
I knew that something was very wrong for the five years before my diagnosis, but dealt with doctors who kept writing me off. My HMO time - I was told my list was too long and we would look at one or two things - couldn't go over the 5 or 10 minute time allotment for appointments! Then there was the specialist who, when I started getting aggressive about finding answers, told me that I just wanted a cancer diagnosis and he wasn't going to give it to me, despite the fact that I had labs ordered by him that showed that something was wrong.
It seems that some of us find our diagnosis by accident at a time we are feeling well, while others, I'm one, know something is wrong, or look back and realize that there were signs of a problem, but didn't get an answer until we clearly were ill. I do wonder when everything actually started and about being predisposed to something like this because of my past health history, but I also come from a family with multiple cancers including other leukemias/lymphomas, so ????
Something to wonder about from time to time and then forget about as much as possible, because there really are no answers, I guess. That is sometimes hard to do, living at a time when there seems to be an answer for most things if you do enough research.
Maria - Looking back at older labs may give you some idea about when things started, but it also may tell you nothing. What's important is to look forward at all of the advances in treatment and to have a basic knowledge of that so you are ahead of the game if the treatment discussion ever comes up. And, to find a doctor who truly understands CLL!
Don't obsess about understanding all of the technicalities. I did that when I first discovered a support group. I finally realized that I could read some of the studies posted by others forever and that I still wouldn't understand them. Now I scan the technical articles and trust that my doctor, and friends in groups like this, will fill in the details for me if something applies to my particular case.
Pat
I was fortunate at my first consultation with my haematologist he showed my blood results and told me that I had CLL for approx 9 months, but without the MIR scan I had after I had collapsed at work he reckoned it would have been 2 more years. So it was good in one way but may blissful ignorance is good too cos you can't do much about it.
Hi Maria.
I was diagnosed at almost the same time as you and I am also a watch and wait. Yes I have wondered the same thing about how long I've had CLL so I went back and looked at my past physical exam records. I suspect I had this a year before I was diagnosed because my WBC a year and a half before diagnosis was about 11,000 which was borderline. I can't help but wonder why it didn't cause some curiosity for my former internist. What matters is you now know you have it and it's a good thing you didn't know before because there was nothing you could have done but worry more. There are great strides being made and the CLL treatment world is rapidly changing. We may be the lucky ones they finally find out how to cure or put in to long term remission. In the meantime, enjoy your watch and wait for as long as it lasts. All the best to you on your journey and just know you're not in this alone.
Regards,
RK66
If you have a yearly physical your CBC can give you some clues or data. A gradual elevation in your WBC, TLC early stage. I have records and figured mine started three years before my DX. Three less years to worry!
Just diagnosed at 30
Not just night sweats
