CLL and recent TIA

[Mamouchi]

Hi..I ended up in Emergecy with a ministroke. The report indicates that given my CLL history, this could be related to a vascular phenomenon with subcritical stroke or infiltrates associated with CLL. Anybody experienced this.

[DebKat999]

Hi, I also had a TIA experience in 2018 and I'm still currently untreated for my CLL. I am not familiar with the vascular phenomenon you mention though, I'm sorry. I hope you are home and feeling much better now.

Debbie

[AussieNeil Partner Founder Admin]

Was this vascular phenomenon described as sludging, i.e. leukostatis, where leukaemia cells collect and block blood vessels? If so, was it actually confirmed by your cardiologist as the reason for your TIA or just a suggestion, given TIAs occur in those without CLL? How high is your lymphocyte count? (Note that we have members with counts well over 200 still in watch and wait.)

The reason I ask these questions is that while leukostatis is perhaps an under-recognised complication in other leukaemias, it is actually quite rare in CLL. That's because unlike other leukaemias, CLL cells don't clump together in blood vessels and are very small - just slightly larger than red blood cells, which normally outnumber B-cells by 1,000 to 1. It's also why there is no lymphocyte count trigger for starting CLL treatment, just doubling time under 6 months if your count is over 30 and even then other indications are looked for to confirm that treatment time has arrived.

Neil

[Mamouchi in reply to AussieNeil]

Neil: I am in watchful wait. What is exactly that I have to review on my blood count? I have SLL and the lymphnodes keep growing each time I have a new ultrasound. No treatment yet. This is news to me. Seeing my oncoligist next week while waiting for an app with Nerologist at the Stroke Prevention Clinic . I am my own case manager and if I dont pester nothing happens. Also, no mention is made in the ER report of extensive cardiovascular issues in my family. ie: my mother died of a stroke.

[AussieNeil Partner Founder Admin in reply to Mamouchi]

I'm glad you got back to me, because your experience shows how poorly understood CLL/SLL can be by those in the medical profession who don't regularly come across patients with this disease. That's often the case, as CLL/SLL is a relatively rare cancer and as such is designated an orphan disease to encourage pharmaceutical company research.

An SLL diagnosis requires a lymphocyte count of less than 5.0, with the reference lymphocyte range typically being 1.5 to 3.5. Some authorities even require a monoclonal B-lymphocyte count of over 5.0, which when you include healthy B lymphocytes and other lymphocyte types, means a total lymphocyte count typically around 7.0. If your SLL was thought to be behind your TIA, then I would expect that your lymphocyte count has progressed into 'CLL' territory, bearing in mind that the WHO considers CLL and SLL to be the same disease, which were historically separately diagnosed by haematologists reviewing differential white blood cell counts and pathologists reviewing lymph node biopsies respectively.

I'm not medically trained, but I would suggest that unless your lymphocyte count is now way, way up into CLL territory, your TIA has nothing at all to do with your SLL diagnosis and as you note, much more likely to be due to your presumably genetically inherited higher cardiovascular risk. It's great that this is now getting appropriate attention, so your CV risk will be well managed.

Neil

[cllady01 Former Volunteer]

This study is interesting, involving patients with "Hemological Disorders" including blood cancers.

williams.medicine.wisc.edu/...

[AussieNeil Partner Founder Admin in reply to cllady01]

Interesting overview from one practice. Quotes from the article:-

"In approximately 1% of all patients and 4% of young adults with cerebral infarctions, the major trigger of brain ischemia is a hematological or coagulation disorder that predisposes to thrombosis.

:

Our cohort includes 1220 consecutive patients, admitted for stroke or transient ischemic attack suspicion in our stroke unit, between June2007 and February 2010."

There was one CLL patient.

[morepork]

On Nov 25th I experienced double vision , some nausea and "jelly legs" . Have been on Ibrutinib 280mg about 3 1/2 years. Very transient symptoms though when finally seen by GP on 27th ended up in ED for checking . No signs or symptoms by then, CT Scan normal . ALC had been around 8 - fluctuates, but currently 13.5. So diagnosis was ? TIA - no admission, balance/focussing etc yielded nothing. A/Fib comes and goes, arrhythmia not rapid heart rates.

[barger1951]

If you took Ibrutinib AFIB is associated with that medicine, not sure if that be related. Barger

[virdieblue]

I had a minor stroke and a TIA this past summer. The neurologist said I had some narrow blood vessels that I may have been born with, but I am also having problems with Ibrutinib's affect on blood pressure. That's a fairly common side effect. Virginia

[schmitthj007]

Hi there

I believe it is a bit shortsighted to assume your TIA might be related to CLL/SLL unless there is a clear reason that points in this direction. In medicine we gain knowledge by excluding bad things and what is left over after we exclude everything else is the diagnosis. There are many reasons that can lead to a TIA including micro vascular disease that may come with advance age as well as cardiovascular disease like atrial fibrillation that is more prevalent with advanced age or in the younger population with a hole in your heart between the small chambers. In general TIAs and strokes warrant a neurological and cardiovascular work up and I would not assume that the CLL is the culprit of your TIA. All the best

Heiko