CLL Blood count trends BEFORE your Diagnosis and how long it took to develop your Dx of CLL. Please Help!

[portaa20]

Hi All, I am new here. I have noticed a gradual decrease in platelets since 2010 ( being 181) and most recent blood work December 2017 (being 127.)

WBC's 2010 were 7.2 and noticing a decrease there as well being 4.0 in December 2017.

I am wondering if others have had chronically low platelets and low WBC's for years following their diagnosis and if so can you please share some of your blood counts and symptoms that you experienced and also generally about how long it took for your CLL diagnosis from when you first noticed your decrease in blood count.

I have been to a oncologist in 2016 and when platelet count jumped up to 150 and WBC count up to just about the bottom end of normal but THE OVERALL TREND has a decrease in platelet with the most recent at 127 as mentioned above and WBC at 4.0 again mentioned above so I am somewhat concerned and curious how long it took to get your diagnosis and also wondering if people out there were wondering if they had CLL and noticed a similar trend in their blood work. I have not had a Bone marrow biopsy yet nor do I want one but will likely just monitor the counts.

[AussieNeil Partner Administrator]

You need to monitor your lymphocyte count, not your WBC. Do you know how that changed over time before your diagnosis?

I would suggest that it is extremely rare for a WBC to decrease over time with CLL. It almost happened to me, because CLL bone marrow infiltration reduced my ability to make the most common form of white blood cells - neutrophils and I initially had the SLL form of CLL/SLL. From what I have read of how people are diagnosed with CLL, it is an extremely rare situation to have both SLL and neutropenia from the CLL/SLL. Having anaemia or low platelets is far more common.

Neil

[Indolent]

I was dx early this year. At dx my platelets were 150, with all other blood numbers normal. I was presenting enlarged lymph node and it turned out to be SLL. My latest platelet number is 120. The downward trend for my platelets began in 2014. I typically was in the low 200's for years prior. So something was happening 2-3 years prior to dx.

[Judyanne]

Hi,

I have had the same downward trend of platelets and wbc since 2010. In 2010 platelets 297, wbc 5.9. 2017 my platelets are 94 and wbc 2.21. ANC now .84. I have Sll. I was not given diagnosis until 2016 when felt enlarged spleen. Still on wait and watch. Bone marrow 20% infiltrated. Appears spleen is causing downward trend. My lymphocyte count has barely changed because very little in blood. Guess I have the rare presentation.

[AussieNeil Partner Administrator in reply to Judyanne]

With an ANC of 0.84, how are you going avoiding infections? According to Dr Susan Leclair, if your ANC is below 1.0, you need to follow a 'Neutropenic lifestyle'. Skin infections resulted in me being hospitalised twice, but thankfully I have been able to avoid a further hospital stay since starting on IgG infusions. These understandably haven't helped the neutropenia, but thankfully now infections don't seem to hit me so hard...

[Judyanne in reply to AussieNeil]

Hi Aussieneil, Thanks for catching my typo. My alc is .84. Neutrophils are 1.11, almost at the point of neutropenic diet. So far no infections. Only couple of UTI.

In a previous post, I believe you had mentioned your spleen hasn’t grown anymore. Are you doing anything special? My spleen keeps growing and will probably be reason for treatment. Blood counts have been stable low for few years. Thanks for all the help you provide.

[AussieNeil Partner Administrator in reply to Judyanne]

Good to hear your ANC is still above 1.0 - I hope it stays there. Certainly an enlarging spleen filters out platelets and red blood cells before their true end of life, making our bone marrow work harder, which is not easy when it becomes increasingly infiltrated with CLL, so we see falling platelet and red blood cell counts and sometimes falling neutrophil counts. Neutropenia can also be caused by auto-immunity, but that's a more rare situation.

I've been taking 2 grams of EGCG daily which may or may not be responsible for my spleen and nodes not noticeably changing in 9 years. It hasn't stopped bone marrow infiltration, so I'm seeing my platelet and red blood cell counts continuing to fall, with low platelets probably likely to trigger treatment. Thankfully both these counts seem to have stabilised since I've been on IgG, which is a bit of a (welcome) mystery, because I didn't show up as having an auto-immune factor behind the anaemia. CLL/SLL is so extremely heterogeneous in presentation.

PS You can edit anything you post by selecting the 'v' below your submission and selecting 'Edit'.

[Judyanne in reply to AussieNeil]

So glad the IgG has helped you lessen the effects on infections.

[MsLockYourPosts Passed Volunteer]

Portaa20 - Have you been diagnosed with CLL. or are you looking for reasons behind symptoms you are experiencing?

[CADreamer]

Dx SLL in January 2016 due to low platelets and slightly enlarged spleen and lymph nodes. Convinced had SLL long ago since my platelets always been around 170 since 2010. Currently platelets 105. WBC dropping slowly from normal 4.0 since 2010 to current 3.1. ANC dropped to now 1.6. All other numbers good. Feel great. On W & W. Don’t get sick very often. My biggest problem seems to be skin cancer, probably unrelated since I played a lot of tennis in my 70 years of life.