What age were you diagnosed with CLL/SLL? - CLL Support
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After getting over the initial shock of diagnosis which took almost a year, I remembered that.. Yesterday is history, tomorrow is a mystery, and today is a gift...and all became better in my head.
Hi I have been diagnosed four weeks ago and am still in shock however try to live each day like you suggest I have my first Cancer Day Unit Appointment tomorrow so will find out more Although I was diagnosed with chronic fatigue 2 years ago and in fact it was CLL I am still none the wiser. I carry on as I did when I thought it was fatigue but of course its a lot worse
I was 56 when diagnosed with CLL
Similiar for me as Soflajoe,The shock must be detrimental to ones health and family.
Doctors should be trained in giving people the diagnosis more humanely.
I am still on watch and wait.
I was diagnosed a year ago.
My Doctor does not seem to take any notice of my symptons.
totally empathise! "People don't die from CLL" says he, I guess it is his way of either trying to relax me, OR maybe HIS way of coping with the fact that he can do nothing to help me.
Feel good!
"People don't die from CLL" says he, ..... On the other side of the coin - I was talking to my consultant about my symptoms etc, and she said ( In a very nice way - as my counts mean that I'm still on W&W ) " not my problem, that's your GP's. "
I get on well with my consultant, and most of my GP's, but it is not good when feeling unwell, having to going to the GP ( where all those ill people go ), to be told " I'll make an appointment to see the nurse ( where all those ....go ) and we'll take some blood, then make another appointment to come down next week and ......... meanwhile I am still ill, have now visited the health center three times ( where all those ..... ) had no treatment/medication, exposed myself to colds/flu's etc ... ( whatever is going around also visits the GP ) and my GP is happy to watch and wait, and I'm left to think ....... what IS the point in going to the GP?
As there is no one size fits all with CLL, I think we should have a ' report card ' so that we can better the link between Consultants and GP's. Some basic questions of what we should be doing/asking on hospital visits, and some feedback and basic questions and information we should be asking the GP. If you handed a report card to a GP, it may make help to make us fell less like a shuttlecock between Consultants and GP's ......
I found a lot of exercise aggravated my lymph glands,I lead a more sedentary life now.I dont seem to be able to sleeep for long and worry about the future and suppoting my wife.Financialy it is a struggle.I miss the social life I used to have.When family visit there is a sillence about me.Macmillan did supply some counseling which I found helpful but it has stopped now.
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I dont seem to be able to access the questionaire? Where are the questions 1,2,3,4,Etc?
Hi
This is only a one trick pony, There is one question and 8 answer options. This facility provides us with little room for much more.
I feel it would be helpful if there was a local group and we could compare notes, experiances Etc:Even my wife who is a psychiatrist has gone into denial.
Let us know your region we can then look at what may be in the pipes or is available to you.
Anglesey, North Wales.
Blood test done on the Friday and rushed to Birmingham for analysis as Coventry hospital did not have the facility!. Told to come back on the following Monday afternoon for result. Was called in and Doc looked at me straight faced with no emotion and said " ah! you've got leukeamia !! " That was 18 years ago (1995) on the day of my 50th birthday. Today --- still alive and still pumping blood bar minor hiccups !! Mind over matter. No treatment. Have since then Watched, Waited and Wondered as to what tomorrow will bring lol!!
That has heartened me. I have had it for 6 years but every check up the white cells have increased, it scares me but still on watch and wait. Try to think I wont get it as they say that you can bring things on with your mind, so I do try to be positive
I was given the given the bad news bluntly 15 years ago and after 10 years of many treatments am now on a trial of idilalisib. I try to make the most of each day and ignore how short my future may be. My first grandson is 3 weeks old and I know I can now live with this beast of a disease. Best wishes to all.
Does this poll also reflect that younger people use the internet more?
The 70 plus group are less likely to be looking at these pages?..
I look forward to seeing more information as it is posted, I think in the first instance it helps community users identify with others and can be reassuring too, especially when recently diagnosed. As a younger patient (in the overall minority) I find more of my own age group are more visible on-line are they the majority though?.
Results will reflect information about active contributors/participants in discussions/polls within this on-line community. Recent polls provided helpful information about and for members of this community. it will be interesting to see how the current poll results compare to disease demographics. where the average age at diagnosis is 72. I posted in another thread the on-line facilty and study provided by a UK patient group: clltracker.co.uk here a similar poll graphs their average age of diagnosis for on-line particpants as closer to 59/60.
The poll can't identify the individual, who may be an older watcher or what proportion of the 70 plus group are using the internet or are reading these pages.But I think you are right computer use will have influence- silver surfers are increasing in number and are the fastest growing portion of the general population.
I was only 47, when I was diagnosed with CLL three years ago. I was internet and computer illiterate. the need for information about my own disease and others experiences with it with whom I could share information and gain much needed support have driven me here,Many of the older will not have that as an option.
Will it be long before the imbalance evens out some as government agencies start compulsory use of on-line facilities to access entitlements etc It's getting pretty hard to function with out using on-line services to mange utilities etc.?
My in-laws are approaching 90 and they put me to shame.
I am 68 and online if you want to hook up any time?
The results on the clltracker.co.uk looks interesting and is peaking around 60 but again is based on an online survey.
I assume national disease statistics are drawn from the clinical database?
How do you find out why the missing group is not visible on-line? There could be several reasons such as being not computer savvy, not informed, having differing life priorities etc. Interesting discussion and very interesting to see at what age people were diagnosed in the participateing/contributary group within our community- thanks for the poll
Interesting that the age range in clltracker 2010/11 (221) is around 60 - 2011 to date around 54. Should encourage all those online in CLLSA to fill in to improve statistics.
Have to work with the tools you have and be aware of the short comings - doing it by post would probably be biased the other way and get a very poor response.
We should look at survey monkey again but can use clltracker for the basics. Do you have any polls that would benefit from more structure.
I am sure there might be some weighting because the poll is online but only a bit. We got my father his first computer at 70 and he never looked back!
I think the results so far do show that there are many people diagnosed younger than 76 which is quoted as the average age. Those diagnosed later in life may have had CLL for many years before diagnosis if they had not needed a blood test for any reason. So the peak of the distribution should be younger than 76?
Certainly will reflect the improved/cheaper testing so people are being identified earlier from a fairly standard blood test at whatever age they present.
I'm sure that this has been done before many times. Aren't these age groups too large? 10 yrs is a long span especially in the older age groups. What will this tell us that we don't already know?
Hi Mikey, yes interesting observations,
We haven't polled this here yet and there are many who may have not participated or read in other CLL forums. I mentioned above; I think in the first instance it helps community users identify with others and can be reassuring too, especially when recently diagnosed. The age groups probably are too large but the facility only allows for a maximum number of options. It will give us all a picture though about diagnosis age of participants from this community. Different on-line communities seem to deliver different results, all confirm this is very different to the overall CLL population.
Here is another clltracker.co.uk smaller age groups have been used. Hope this is helpful
Thanks for the reminder, Nick. I signed up about a year ago. Forgot all about it!!
Unfortunately only have the option for 8 answers at the moment on heathunlocked hence the sampling used. The results available at clltracker.co.uk give a finer sampling and a peak in the distribution around 60. Again an online survey but probably a more realistic age of diagnosis - just being diagnosed earlier.
I was diagnosed just over a year ago, at the 'average' age of 72 ...my haematologist said "You have..." and I finished her sentence "...Chronic Lymphocytic Leukaemia" 
She asked "Did your general practitioner tell you?" ...I said "No, I worked it out for myself!"
I do think about it every day, but it does not rule my life and I don't worry unduly ... I am virtually symptom-free at present, and (looking back at my previous blood tests) had probably had it for a couple of years before anyone noticed!
I am optimistic that something like ibrutinib will be more generally accessible by the time that I need treatment ... if ever!
Well done you. When I was diagnosed I was floored. I asked the G.P. How long I had, He said "How long have I got I could walik out of here and get run over by a bus, Facts He has a 4X4. If had a bus I would have run him over.Now I have cooled down thanks to this site anda conference where Dr Pettit attended in Liverpool, straitened my wife out a lot as well.
Hi I was 50yrs old when 1st given the news about CLL its was delivered very off hand. I have had FCR + M Oct 2010 and am at present free from any signs that its coming back, although I know it will. I too hope for ibrutinib as I had a bad experence with chemo.Its interesting to see that on line I am talking to my peers in terms of age and so forth as its here on this site that I feel more at home.
Hi, I am 54 and was diagnosed in February. Informed by receiving an appointment letter from the haematology dept at local hospital. When I phoned my GP re this was told "Oh, did no one contact you to tell you have leukaemia?" Advice from GP has been terrible... told me that there was no problem with my immune system and that CLL should not affect my work as a university lecturer who visits primary and nursery schools on a regular basis.
Hmmm its amazing how many of us have had a diagnosis delivered to us in a less than professional manner by our GP's, I too walked in to him pronouncing in a very cheery manner "you've got Leukaemia!" to say I was floored is an understatement, I walked back form the docs in a daze and just broke down when I got home and told the Mrs.
Thanks to sites like this and Macmillans, I am now much better informed and ready to fight this bloody thing, even my Haematologist, who copies me in on the letters he sends to the GP, says I have a very good understanding of the disease. I only hope my GP does some reading and takes the condition serious as I won't sit in silence if I can see he is fobbing me off 
I collapsed week before Christmas 2001, didn't come round until week after new year, was in hospital the first time for 6 weeks. Before I collapsed I hadn't had visits to the GP for over a year,
I had been in good health and had been playing in a snooker match over 3 frames with a few pints only the night before.
I cannot fault my G P he has been wonderful and treats every infection I get very promptly. I am 62 and was diagnosed four years ago. Still working and still relatively fit but get very tired. On watch and wait with count of 39 at the moment. Just get on with life and hope I get the new drugs when I need them no chemo.i have a friend who has cll a d has just had fifth chemo she has had a rough time but is doing ok now with just one more treatment to go. Same G P as me and brilliant treatment from the consultant and hospital . So hope everyone else can find the same support medically as it makes life easier.
Why are we all told Oh! you have CLL. I was told its a good one to get!!!! What's good about it please tell me doctor.... do you have it? I was told on the 27th December 2012... happy New Year!!!! The doctor I saw at the surgery got on the phone when I was their to the hospital to get me an appointment, told would get one in the next two weeks. Didn't know how to tell my mum and dad as I was 42 years old. Got a call and was asked if I want an early appointment would I travel.... of course you would because I wanted answers. Well went through all the test and now on watch and wait!!!!! Still go to hospital every two months and have blood tests just before I go. Last appointment was June was told blood count has gone up but nothing to worry about but need to start taking iron table and that has nothing to do with CLL. The only thing is i'm never told what is a normal level and what my count is? On a up side I have a very supported partner and family and we all can get through this, yes I have really low days but that happens to loads of people.
Sounds like you've got a strong incentive to get hold of your results. Then at least you can further investigate any results that concern you to see whether that concern is warranted. If you feel comfortable doing so, you could also share them with this community for some feedback. (If you do, for some privacy, you might want to select the option "Question is visible only to members of this community" under Who can see this question?) I usually get lots of stars on my blood test results flagging out of range results, but they are the new normal for me.
I expect you'll see the time between appointments lengthen as your specialist gets a better feel for the stability of your CLL.
You do have youth on your side which means that there are options like stronger treatments or possibly a bone marrow transplant if that becomes necessary. I'd recommend you sound out your specialist on what prognostic testing has been done and whether there is anything in them that could indicate that you might need treatment sooner rather than later. That way you'll have more time to work out what you want to do. Thankfully with CLL it is rare we get rushed into treatment.
Check out the results to the poll on how long to treatment if you haven't already:
cllsupport.healthunlocked.c...
Neil
Thanks for your reply, back at hospital in August. Really need to ask more questions but not really sure what are the important ones to ask and the right ones?
I generally go to my appointments with some questions written down to ask - but don't always get around to asking all of them. As to what is right and important, the wrong question I guess is the one you should have asked and didn't - so don't be afraid to ask about any concerns you have. I know now I've asked about changes that worried me at the time, but in retrospect weren't a big issue. My questions were still treated seriously which I appreciated. The problem is that you and I don't know whether what concerns us is worthy of concern or not but the specialist does (or should do). Hopefully what's important for you to know is where the training and skills of the doctor work for you in that they will tell you that.
Someone wise once said "To ask a question you have to know 80% of the answer" in other words, you need to understand enough about the topic to be able to understand the answer. Sites like this can help you work out what changes in your health are worth following up, what the likely outcomes are and help you chose what's best for you.
Hope this makes sense,
Neil
Thanks! Really helpful, yes makes sense
I am 46 and everything you wrote is how I feel as well. I also would like to know what is up with " It's a good one to get" I was told the same...It's an old persons cancer and you will die of old age before you will of this..Some days through...the fatigue is hard and the fevers...but I haven't lost weight! Now I found a lump in my breast...I too wish the Doctor would tell me what the "normal" count is. Hang in there!! We will get through this!
I was diagnosed one year ago with cll and now I found a lump in my right breast. I am trying to stay positive..went through the aspirate stage...not fluid filled...got the ultra sound...doesn't meet cyst criteria...get a mammogram on the 15 then we will see. I am 46 years old and am a little nervous. I hate the phrase wait and watch. Has anyone out there been diagnosed with cll and then got breast cancer?
Micky1,
Unfortunately many types of secondary cancers (including breast cancer) are significantly higher in those with CLL than the general population - see:
cllsupport.healthunlocked.c...
You are doing everything right in getting this checked out ASAP. Make certain that your concerns continue to be treated seriously and quote the research referenced in the blog above it you think it is called for. I hope it all turns out to be false alarm.
Regarding what's a 'normal' blood count for CLL, well it really comes down to what's normal for you. WBC counts can range from under 5 for those of us with SLL to over 1,000 (or over 1,000,0000 if you use the US measurements). 'Average' might be in the range of between 10 and 100, but they can also fluctuate quite dramatically at times. Other symptoms and the long term WBC trend is what's important.
Neil
My husband was diagnosed 7 years ago.He was treated with Chlorambucil from time to time which kept the CLL under control until last September when his Haematologist suggested he have FCR to shrink the lymph glands which were enlarged. He had the first course at the beginning of October 2012 followed by a second at the beginning of November, at the end of November he was hospitalised with Takotsubo's cardiomyopathy .The chemo was put on hold as he was so unwell, he has also had shingles with the pain from that continuing to be a nuisance for the last year and a half. His health has continued to go downhill since January this year. He now has difficulty walking, a lot of pain in his legs and back. He has had a lumbar puncture 2 MRI scans of his head and electrical conductivity test which showed inflamation of the nerves and inflamation of the muscles. he is now going to have a muscle biopsy and then hopefully some treatment to alleviate the pain and improve his walking. I know from research that this can be caused by a number of things so hopefully we will find out the cause of his currant problems after he has the biopsy. We both feel it is easier to cope once you know what you are dealing with, it is the uncertainty that is so very hard to deal with. I cannot fault my husbands Haematologist or the Neurologist he referred my husband to for his latest problems. The only grumble we have is the length of time you have to wait for appointments for the necessary investigations.
Hi Manzelka
You and your husband have certainly been through the mill, with so many problems. It must be really hard for you.
I agree that it is easier to deal with stuff, when you know the cause and I hope he doesn't have to wait too long for the appointment for the biopsy and other investigations.....waiting time is terrible.
Thinking of you and if you feel able, perhaps you can let us know how you get on.
Very best wishes
sparkler x
Thank you sparkler. we are now waiting to have an appointment for my husband to be given immunoglobulin which the Neurologist says should help a lot with the currant problems with walking and pain in his legs. so keeping fingers crossed it goes ahead soon as the past weeks have been rotten for him.
I've been trying to think of something, anything, positive to say about CLL and the only thing I can think of is it's the only context I'm described as 'young' in!
Diagnosed at 54 a year ago, I happily accept the 'young patient' label because it's the only thing it has going for it!
Some of the accounts on here are harrowing, humbling and probably hide a mass of suffering so I send my support and best wishes to all.
I agree that some GP's just can't get their clinical heads round the chronic nature of CLL and therefore relegate it's serious potential.
My well meaning GP said he didn't like to view it as leukaemia at this stage and preferred the term, 'lymphocytosis'. I said you can call it Athletes's foot if it makes you feel better but it will still kill me!
It's interesting that the poll result so far is in variance with the reported median age for diagnosis with CLL which I read is usually between 66-72. Or maybe this site attracts a predominently younger group?
Newdawn x
I was diagnosed by accident. As I have heart problems in my family I was advised to be tested due to high rate of heart attacks. I was so shocked and still coming to terms with it. On the bright side they have said I'm young (55) and other wise very health. I found this site by chance and its good to talk to others who know how your feeling. X
Hi Louiej
I think that it is a stroke of luck that you've found this site........naturally, I wish you hadn't need of it but you will find lots of support and reliable information here.
Many of us with CLL have been diagnosed by accident and we will all remember the shock at first and the difficulties of absorbing what we have been told. It does take a while to come to terms with. It is good to hear that you are otherwise healthy - that is very positive.
Take your time to have a good look around the site, as there is much written and it is all in the various categories. Feel free to ask any questions and someone will be along to help. This is also a good place to talk about things that you may find difficult elsewhere. It is a safe place and you are amongst people who understand.
Warm wishes and take care.
sparkler x
Glad it made you laugh Pitbull, it did me too probably because I have a dark sense of humour. But we have to find humour where we can to sustain us!
Regards to all,
Newdawn x
It's so refreshing to hear witty comments and bit of humour for a change. X
Hi Louie,
Extending my welcome to you too and thanks for your comments. Like you I'm 55 and was diagnosed last year. It must have been a bolt out of the blue for you to be told after totally unconnected tests especially as you will have been worried enough about the heart issues. Hope they worked out ok for you.
As Sparkler has said, we do understand and we are all on that roller-coster of emotions that it's difficult for non sufferers to fully appreciate. So glad you found the site and please drop in any time to give or receive support, ask questions or even for a rant or a laugh.
With kindest regards,
Newdawn x
Father in law diagnosed at 51, last week, stage IV. Looking back... He has been having night sweets for years that my mother in law used to joke about. Last year when I helped him with some surgeries he seemed to be having shortness of breath. Last year in January he had a persistent cough that took a month to disappear. This year the same cough came back and he presented an enlarged nodule on his neck... This was the reason for the blood test that lead to more tests and then diagnosis. For some odd reason I think that his being a doctor in some way postponed the diagnosis, as he prescribed his own medicines for coughs and never got a blood test.... wish the blood test had come sooner, before his platelet count had gone bellow 30.
Yesterday he started Chloambucil + Predistone. (I know I have posted somewhere else about this but am answering this post because some people may be looking for answers).
I was 30 when diagnosed with CLL 5 years ago...
Nine years ago
I was diagnosed in 2011 aged 52 and started FCR in April 2012 and finished the treatment after 6 sessions in October 2012. Regular blood tests have followed and so far so good.
