One well known US CLL specialist has a different view, as posted in the CLL/SLL Groups.io community a few years ago.
Re: Are DVT and Pulmonary Edema Common with CLL/SLL?From: Rick Furman
Date: Wed, 17 Apr 2019 08:13:34 ACST
CLL patients are typically at a lower risk of blood clots than other patients. Having a high WBC or having a malignancy does not always result in increased inflammation. Additionally, some people have published that there is a protein on the surface of CLL cells (CD39) that might inhibit platelet function and be protective.
I am not aware of any specific risk of clots/thrombosis with CLL however, all active cancer carries an increased risk of thrombosis with some cancers such as pancreatic, lung and bread having a further increased risk. The emphasis is on active cancer and as CLL is a fairly indolent cancer with the possibility of lower than average platelet counts the published rates in CLL vary significantly.
Remember that patient-related risk factors such as presence of cardiovascular disease or cardiovascular risk factors (i.e. diabetes, hypertension, obesity, dyslipidaemia) will have a significant impact on the risk. A previous history of thrombosis prior to CLL and or the diagnosis of an additional cancer increases the risk. The risk of death is increased in the years following a thrombosis.
The so-called Key Point, that "The incidence rate of venous thromboembolism in patients with chronic lymphocytic leukemia was 8.2 per 1000 person-years" is a bit misleading, as people might be tempted to compare it with VTE incidence in the general population. In fact, 8.2 is just the number of all VTEs (blood clots) seen in follow-up =92, multiplied by 1000 divided by the sum of all 3609 individual follow-up intervals in years.
FWIW, the cumulative incidence of VTEs in the Danish population at age 70 is 4.3 % for females and 4.4 % for males link.springer.com/article/1... These figures are not comparable with the above.
For my money, the takeaway points are contained within the final paragraph of Discussion:
In conclusion, our study showed that CLL patients with a second primary cancer following CLL diagnosis and those with a history of previous VTE have a considerable risk of VTE. CLL-specific markers were also correlated to VTE, but to a lesser extent.
I’m no doctor but I have been fighting CLL for 16 years and have been on five different chemos, for 6 seasons of chemo. I have one of the top CLL Doctors in the USA, and I’ve never heard that or read anything in this support group blood clot issues. But maybe you have some other issue that made the doctor think this was an issue. If you are not working with a CLL specialist, I would highly encourage you to get one , at least as a consultant. Good luck.
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