Diagnosed with CLL in August 2016

[Yelverton]

I was diagnosed with CLL in August with W&W. thank goodness I found this wonderful, informative site. I have learnt so much which makes me far less stressed. My Haematologist said she follows WHO protocol/diagnosis guidelines of over a 5 Lymphocyte count is CLL. Mine was 5.21. I went for my three month check out and was told I now do not have CLL but MBL as Lymphocyte count now 4.23. I realise MBL is a pre-cursor for CLL.

I was never told another blood test on another day could have a different meaning. And was told at this initial visit people do not become better but can remain the same for years.

I am not complaining but would be grateful for an explanation which I can understand! It has been a bit of a roller coaster ride.

Thank you.

[AussieNeil Partner Administrator]

This article by Dr Jeff Sharman is probably the most helpful in clearly explaining MBL: cll-nhl.com/2013/07/monoclo...

The lymphocyte count of 5 was arbitrarily chosen by a few CLL specialists quite a few years ago, but works fairly well in practice. Importantly for you, if you don't develop CLL symptoms or have clonal lymphocytes infiltrate your bone marrow, spleen, etc or see any of your nodes swell, you could well stay unaffected for the rest of your life.

Neil

[Jakey16]

I too have been given a diagnosis of MBL although my alc is 20. I had an ultrasound on my neck which found lymph nodes which are below 1cm. I am on watch and wait with yearly appointments with haematologist. I have no symptoms apart from suffering from swollen glands if I get an infection.

Jakey

[MsLockYourPosts Passed Volunteer]

Your ALC can jump around. It is the pattern over time that is important. As Neil said, the 5 was just a number chosen by a group of specialists years ago and it works as a guideline. I suppose some hematologists go by the letter of the law, while others would have considered your .21 as putting you in a grey area. Either way you number is very low. Hopefully your ALC will essentially show a flat line over time. The time post diagnosis is a roller coaster ride while we figure out how to live with this news. Start charting your numbers now, if you haven't already. You will begin to see your patterns after a few labs have come back.

[Yelverton in reply to MsLockYourPosts]

Thank you. My Haematologist said after first visit you can't get better bad cells are bad cells so had not realised/understood that it would "jump around"! I feel my Haematologist should perhaps look at blood tests over a set time rather than once and giving diagnosis. I will start charting my results.

[MsLockYourPosts Passed Volunteer in reply to Yelverton]

Bad cells are bad cells. I assume by that your hematologist meant that your Flow cytometry test showed CLL cells. You can't change that, but your counts can jump around quite a bit under 30,000 and not mean much. I think a more patient focused explanation of the test might have been good and an explanation about how the magic 5 was arrived at. It's just a number. Somewhere I read the story about who was sitting around, maybe over drinks, when they came up with 5. It might be in the old ACOR files. I'll look.

[Yelverton]

Thank you for very informative article.

[Bubnojay]

Welcome Yelverton to the club we did not want to join, but have learned so much by doing so. Very many of us were not told at your very early stage but only later found that our ALC had been elevated quite some time before, but the doctor thought it was most probably due to an undiagnosed infection so ignored it.

So ignorance was bliss for a number of years,until a new blood test was taken that finally raised a red flag, though it did explain some symptoms like the tiredness and headaches. In my case giving blood raised a large node in the nape of my neck. Many had their diagnosis as a result of a routine blood test.

What led to your diagnosis?

If you have no symptoms I would just get on with enjoying your life and do all you can to stay as fit as possible presuming you have no other debilitating illnesses.

Best wishes

Bubnjay1

[Yelverton]

I have an annual blood test for overactive thyroid which has behaved now for a number of years. My GP didn't like something on the test so I had a different type of blood test and was sent to a Haematologist. I think the previous test must have been higher as GP thought it was just an ananomoly. I had had an infection too which must have affected result. So without annual blood test it could have been years before diagnosis. I was shocked by the amount of travel insurance I had to pay but told it will come down if no treatment six months after diagnosis.

Great supportive site thank you all for your input very much appreciated.

[janet803]

I was diagnosed with MBL 8 years ago with an ALC of 5.7 although apparently I had been monitored before that but not informed. My ALC at the moment is pretty stable at 6.5 but has been as high as 7.45 and as low as 2.65 (after a hip replacement op) so the counts do go up and down. I now have six monthly check ups and apart from a problem three years ago I previously posted about, I keep pretty well. On my last check up I was informed that my IGM was low at 0.2 luckily I do not have many infections but when I do it takes a long time to clear, a recent chest infection (the first for 12 months) it took nearly 6 weeks to fully recover even though I had a dual action antibiotic as advised by my Specialist. I too get confused at my diagnosis as all information I read on MBL states an ALC above 5 is CLL but I am grateful that I still have a diagnosis of MBL and not CLL and remain fit and active.