recently blacked out twice. The second time i was stood up and i've some facial and dental injuries from the fall over the weekend. Diagnosed lung blood clots (pulmonary embolism) via CT scan. I'm fit, 52, take no other meds and post V&O treatment Nov 22 have been back on the treadmill and felt great.
Not to go too much into that detail but i wondered if anyone knew if CLL increases the likelihood of PE? I can't think of any other DVT like symptoms that i've had that would cause this?
Devastated to have just got through treatment to start another medical chapter. Broken teeth and nose are next on the list to fix.
Thanks
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C0llin
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I don’t have an answer to your question, but I did want to say how sorry I am that you’re dealing with this, just when you thought you were getting back to normal. I hope things get better soon. Lisa
Me too! Apparently i am one lucky boy to have been diagnosed. My first bloods post finishing O&V treatment are next month at my first check up so i'm a bit blind on my bloods. Maybe my consultant can make some sense of it all. I've read that the anti-coagulants (rivaroxaban) that i'm now on can cause anemia.
Hi. I had my first pulmonary embolism in 2014. That’s how my CLL was diagnosed. In January I had my second one which lead to many complications with fluid in my lungs.
My oncologist and pulmonologist both agreed the embolism was due to CLL. Even though my values were fine, I did start the O and V treatments. I’m finished with the O and 4 months with V but only tolerate up to 100 mg. We will see if lungs will continue to fill or , as is the case for the moment , it has stopped. I wish you all the best.
I'm sorry to hear that you went through this frightening experience, which has resulted in some damage to your face and teeth. However I would like to reassure you that as might be deduced from the lack of related posts accompanying your post, that there doesn't appear to be an increased risk of blood clots with CLL. Everyone is at some risk, hence your very unfortunate experience, but the risk with CLL might even be slightly lower than for the general population, according to Dr Rick Furman from Weill Cornell Medicine in New York city. The following quotes are from Dr Furman's answers to the CLL/SLL groups.io community.
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.
Rick Furman
Thromboembolism and CLL
From: Rick Furman
Date: Tue, 05 Jan 2021 05:38:58 ACDT
Cancers, in general, are associated with an increased risk of blood clots. The data for CLL specifically suggests it is not. There may even be a protection afforded by the CLL due to the CD39 expression on CLL cells acting to help prevent platelet activation. Many of the studies in the literature are complicated by poor control populations.
Rick Furman, MD
Re: SCUBA at 100 ft with high WBC.....helpful hints???
From: Rick Furman <rrfurman@med.cornell.edu>
Date: Wed, 13 Jan 2016 19:05:27 PST
It is an interesting biologic distinction between viscosity and leucostasis. When we discuss viscosity of blood, we usually refer to serum viscosity, which is mostly due to the proteins in the serum (usually immunoglobulins). Increased WBCs result in leucostasis, which is more the result of the WBCs interacting with the blood vessel walls and sticking, leading to blockage of flow.
We do not see leucostasis with CLL under normal situations. The WBCs in CLL are small and "not sticky". The highest WBC I have seen in a CLL patient is 762,000. The WBCs in acute leukemias are different. They are larger and tend to be sticky, and there we do see leucostasis when the blast count rises to approximately 75-100,000.
There should be no problem with diving just based upon an elevated WBC.
Rick Furman
angelikab please note that your oncologist and pulmologist may not see as many CLL patients as Dr Furman.
You are THE font of knowledge Neil and I do appreciate the reply. In hindsight, I guess that I’m currently in deep remission with my last recorded ALC at 0.4 leaves me ‘normal’ with very few CLL cells circulating so it would be logical to conclude that I have fallen foul of a low statistical probability of developing PE. I think it’s time to put a lottery ticket on this weekend! BTW I did smile reading what I assume was advice on scuba diving with CLL and a lesson in plumbing 😃.
hypoxia. I was coughing both times I blacked out. I just wasn’t aware of my low blood oxygen levels. I’ve had a cold for 6 weeks or so which hasn’t helped. The clot may take months to flush through apparently.
hi, sorry you’ve had this new condition thrown your way.
I too had a PE, approx 2 years ago now, two years after CLL diagnosis.
It went back and forth between consultants on what the cause was, and like everything else the CLL was given the blame.
My CLL consultants view it as an unknown cause.
I believe I had covid a year before (right at the very beginning of the pandemic dec 19, when no one was up on it) I always wonder if this is what did the damage in me? Resulting in the PE a year later.
I was pretty healthy otherwise and took no other medication.
I am anemic but I’m sure that is the CLL and not the rivaroxaban.
Hi Colin, I don't know about CLL being a risk factor for PE. However, my cousin, 51 at the time, was diagnosed with breast cancer, had had surgery and was a few weeks into chemo for it. At this point I must mention that my cousin never exercised, lacked common sense, and refused to do anything her aunt (my mother) told her to do. Her behaviour was different from yours. She had had a pain in her leg, which she refused to do anything about because mother said it sounded like a DVT - she had had several herself. The pain went and breathlessness arrived literally within minutes. But she refused to go to A&E, and got a stronger inhaler from her GP - she had asthmatic tendencies. The undiagnosed PE moved and she died. It was a needless death, she didnt accept available help.
My mother - the queen of pester power - drove everyone, especially the hospital and breast cancer charities - asking if this had happened because of the cancer. She was told that there is "an increased risk" of DVT/PE in people undergoing chemo.
So yes, I have heard about a link between cancer generally and DVT/PE. BUT there was no need to for my cousin to die, she just stubbornly refused to go back to the breast cancer unit to discuss the symptoms.
So yes - a possible link - your consultant would give a better answer. But you are sensible did the right thing etc, and it can be dealt with safely if it happens again.
Please don't send me lots of condolences about my cousin - it was a long long time ago, and I wasn't close to her at all.
2001 - 1st DVT - left leg --- began treatment with coumadin for the next 5 years or so
2013 - Aug - 2nd DVT - right leg - resume treatment with coumadin
2013 - Oct - diagnosed with SLL
I've seen several hematologists, & they generally agree that I need to be on a blood thinner because of past history of DVTs. I have been confirmed to have Factor V Leiden mutation which is a blood clotting disorder that usually doesn't lead to DVTs.
I have been on ibrutinib & coumadin since 2014 & recently, my CLL/SLL specialist has agreed to give me a drug holiday from ibrutinib. I am continuing on coumadin.
Fortunately, I never progressed to a PE but I'm sure it could've happened. Wishing you the best.
I was diagnosed with an extensive saddle Pulmonary Embolism in 2017. The A&E medics commented at the time, it was due to ‘sticky blood’ being a CLL Patient. The Haematology Team later disagreed, so I concluded there appeared to be differing opinions. A daily dose of 5mg Apixaban dispersed the PE successfully.
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Ibrutinib / Imbruvica?
Treatment starting 4th February 
Peripheral Neuropathy 
New to the group and New to CLL
