CLL/SLL and ischemic bowel death

[prichman]

My brother had untreated SLL. He died March 2022, after a week of omicron Covid infection that seemed to pass mid January of that year. We have heard rumors that many with CLL/SLL die of blood clot/ischemia, but I have been unable to confirm. Are there data to confirm this? I myself have CLL, which is essentially the same disease.

[mdsp7]

How very sad! I am awfully sorry for your loss. I wonder whether we should take aspirin. Did he have any unusual discomfort?

[lankisterguy Volunteer]

Hi prichman,

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I checked our past postings for ischemic and found this list of 13 (out of 37,269 postings): healthunlocked.com/cllsuppo...

nearly all are about heart conditions, only one mentioned a bowel issue:

healthunlocked.com/cllsuppo...

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Len

[AussieNeil Partner Administrator]

I'm sorry to hear that you lost your brother, particularly after he survived a COVID-19 infection. While the clot causing loss of blood supply could have happened independent of his SLL or COVID-19 infection, it's sadly much more likely to be due to the COVID-19 infection than his SLL. According to this article from Australia's Heart Foundation, Blood clot risk remains elevated nearly a year after COVID-19

heart.org/en/news/2022/09/1...

"Researchers found that the first week after a COVID-19 diagnosis, the risk of an arterial blood clot – the kind that could cause a heart attack or ischemic stroke by blocking blood flow to the heart or brain – was nearly 22 times higher than in someone without COVID-19. That risk dropped sharply, to less than four times higher, in the second week.

"Between 27 and 49 weeks, there is an approximately 30% increased risk for arterial clots, Sterne said. "But the elevation is greater for longer" for clots in veins, which include deep vein thrombosis and pulmonary embolism, when a clot travels to the lungs."

There is other research reporting the risk of blood clots with a COVID-19 infection is about ten times the risk associated with COVID-19 vaccination. In contrast, the risk of blood clotting associated with having CLL/SLL is typically lower, according to Dr Rick Furman of Weill Cornell/ New York Presbyterian, per his reply 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"

[Yuck in reply to AussieNeil]

Thank you so much for posting Dr. Furman’s remarks that CLL patients are typically at a lower risk of blood clots than other patients. (I have heard the opposite.)

Also, I keep thinking I should post about elevated Lipoprotein(a) which 20% of people unknowingly have, putting them at risk for heart attack, stroke, and aortic stenosis. Those with elevated Lp(a) need to be treated aggressively with medications like statins to severely reduce their LDL. No LDL is too low and heart disease is the number one cause of death.

Primary care doctors can easily add in the Lipoprotein(a) test to the annual cholesterol test or it can be done by simply going to a Quest lab and paying privately for a complete cholesterol test, plus the test for Lipoprotein(a), all for under $100. The lipoprotein(a) test only needs to be done once in a lifetime. Lp(a) is a very evil substance within the regular LDL result.

Such testing should be standard practice, yet it isn’t in the U.S., unlike elsewhere. I hope those who happen to read these remarks will get themselves tested, especially if a family history of premature cardiac disease calls for it. It might require insisting, since many primary care doctors are unaware. Since it is genetic, it is inherited. Exercise and diet do not reduce elevated Lipoprotein(a), but they help with the management of common LDL which is the best straightforward treatment course for now.

Those with elevated Lipoprotein(a) would be better off with an LDL result of under 55 which are the newest published guidelines for those who have diabetes and heart disease.

~ Yuck