Blood Clots

[Ronreebok]

Hi all,

First post and apologies if topic has been covered before. My name is Tony and I am 50 year's old and from Australia and diagnosed with CLL in April of this year from a routine health monitoring at work.

I am a professional Firefighter and have been for the last 8 years. I am in the watch and wait stage with very stable numbers since diagnoses. Recently I suffered a blood clot in my left leg and up into my stomach I am now on blood thinners and will be for possibly for the rest of my life in some form.

I had a blood clot 18 years ago due to some trauma at work which ended up breaking off and into my lungs forming a PE. My haematologist is not 100% convinced that the CLL and clots are linked.

My question is to others out there is, have others had a similar experience ?

Regards,

Tony (Ronreebok)

[AussieNeil Administrator]

Welcome to our community Tony!

I agree with your haematologist, based on what I've read from other CLL specialists. There's some understandable concern that higher lymphocyte counts with CLL might make one more susceptible to clots, but CLL cells are not sticky and are very small cells, hardly larger than red blood cells. We have members in our community with lymphocyte counts above 500, by the way.

Do keep in mind that if you receive some replies sharing similar clot experiences from our 20,000+ members, you also need to show that the incidence is higher than in those without CLL in a large population. Something like Venous thromboembolism in chronic lymphocytic leukemia: a Danish nationwide cohort study

pubmed.ncbi.nlm.nih.gov/304...

Which concluded, with direct relevance to you (underlined);

Our findings suggest that markers of unfavorable CLL prognosis contribute to an increased risk of VTE; however, previous VTE or a second primary cancer is more strongly associated with the risk of VTE than any CLL-specific marker. Focusing attention on this preventable complication may improve survival in young CLL patients.

Neil

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I have Had CLL since September 9th 2011 no issues as of yet with Blood clots...just got a Blood test back that says very High white count and Low platelets Googled And have to watch for Blood clots now tho ...

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my white count is 80,000

[Livingwith67]

Hi Tony, sorry to hear about the recent blood clot. I was diagnosed with CLL 3.5 yrs ago and on watch and wait. Age 45. WBC 121,000. I had a PE two years ago and conclusion was that CLL likely caused it as nothing else seemed to be an issue for me. Therefore I have to take blood thinners most likely forever as a preventative of further. I have managed to persuade them to give me the lowest dose, (they wouldn’t agree to me stopping them completely) purely because at my check up a few months later my oxygen levels were 100%, better than the consultant treating me. Sending you lots of thoughts for a quick recovery.