2 questions 😊: Q1. Is there a connection... - CLL Support

CLL Support

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2 questions 😊

Sepsur
Sepsur

Q1. Is there a connection between EBV & likelihood of RT?

Q2. Anyone got dental fragility & chipping on Venetoclax & Ibrutinib?

40 Replies

🤣🤣🤣🤣

What is EBV?

RZ8983DV
RZ8983DV in reply to Sushibruno

I think it is Epstein Barr virus

mantana
mantana in reply to Sushibruno

EBV, Epstein–Barr virus?

One of oncoviruses (viruses causing cancer): en.wikipedia.org/wiki/Oncov...

I can't answer either of your questions, but I have to say I 🤣🤣 at your picture!Cx

JigFettler
JigFettlerVolunteer

Had EBV age 26.Have dental fragility since FCR! While retaining excellent gum health.

Jig

JigFettler
JigFettlerVolunteer

PS(!) How are you? Jig

Sepsur
Sepsur in reply to JigFettler

Ok thank you - full body CT scan yesterday - I’ll know results in 10 days - then the dreaded BMB😱 how about you?

JigFettler
JigFettlerVolunteer in reply to Sepsur

Yeh! I'm v good Ta!

I am a ton more lucky than many.

CT results 🙏

Jig

What is RT? I had EBV when I was 17, lasted a while, and was at least 12 months before I felt human again.

Richters Transformation- sorry you forget the abbrevi

Thanks for that. It is nearly 50 years since I had EBV. And my consultant told me yesterday that my CLL is very stable, although I am losing weight. He isn't happy about that - I am not intentionally dieting, I just have less appetite. And it is there to lose - I am still overweight despite dropping 5 stone. I will be having a scan. I hope BMB goes ok, I haven't had one yet.

I’ve had 2 & 2 x lumber punctures. Not my favourite experience. Biopsies are a doddle in comparison now had 5 x3 of those.

Hi. I have quite a bit of trouble with chunks breaking off my teeth. I am on Ibrutinib. This is not good as I hate going to the dentist. I hope your scan results are good. All the best

June

Sepsur
Sepsur in reply to june65

I wondered if it was down to treatment or a legacy of ICU - I’ve not had issue with my teeth at all up until now.

Sepsur, that is brilliant, now we know why the world is overpopulated!! But that is another issue!I don't know if there is any connection between EBV and RT but in my experience I may shed some light on the dental question. In 30 years of dental practice I found that the older and sicker people become, the more likely are the teeth to become fragile and chip or (as in my case) just snap off at gum level. I can't envisage how Venetoclax & Ibrutinib could affect the fragility of teeth but without proper research into your question, no-one can say. It could be an interesting topic for a budding DDS!

Best wishes. Jeff

JigFettler
JigFettlerVolunteer in reply to jaypax

Interested. If chronic illness changes the strength structure of teeth, do we know? My problems started with FCR. Avoiding nuts, seeds, anything crunchy... baby food🙈Jig

jaypax
jaypax in reply to JigFettler

It's an interesting thought, I'm sure there has been some research done in the past. I'll check the dental journals.

Sepsur
Sepsur in reply to jaypax

Thank you for your reply - I think sepsis & critical illness is more likely the culprit - some people have hairline fractures caused by biting down on the apparatus in ICU - a delayed response - often people notice it 2/ 3 yrs later. Could it also be oxygen deprivation ? I had hypoxia

Not sure about relationship between EBV and Richters Transformation. I would more generally be interested to know of others who had EBV prior to diagnosis. Although I was unaware of having EBV, a blood test less than a year before my CLL/SLL was diagnosed showed that I had had it. As I’d been generally feeling unwell for 2 years before diagnosis I’m guessing EBV could have been part of the general malaise. Evidence of EBV was given no regard to when I mentioned it at my first haemo appointment but it’s “niggled” ever since with me as being a causal factor.

mantana
mantana in reply to FeistyGirl

> I would more generally be interested to know of others who had EBV prior to diagnosis.

Who didn't have? Most of us did have EBV (and, CMV, and some other herpes viruses, also causing cancer). Most of them stay with us for life.

From Wikipedia article:

en.wikipedia.org/wiki/Epste...

"In the United States, about half of all five-year-old children and about 90% of adults have evidence of previous infection."

Although under active research, an Epstein–Barr virus vaccine is not yet available. The development of an effective vaccine could prevent up to 200,000 cancers globally per year.

Jm954
Jm954Administrator

Interesting subject and Richter transformation to DLBCL driven by Epstein-Barr virus reactivation in chronic lymphocytic leukaemia is perhaps more common that we think but much of the published papers are a few years old.

EBV is, of course, known to be implicated in Burkitts lymphoma, a very fast and aggressive disease in adults but mostly the African version which affects mostly children.

It seems that the presence of EBV mRNA in persons with CLL is associated with briefer time to treatment from diagnosis, increased risk of Richter transformation and worse survival in several studies."The explanation for the association between EBV-DNA and-infection and/or re-activation and Richter transformation is complex. EBV-infection and/or reactivation might cause Richter transformation as it does Burkitt lymphoma. Alternatively, development of Richter syndrome might activate EBV-infection. These interactions are not mutually-exclusive and one, both or neither might operate in different persons."

Here are a few papers on EBV in Richter's

link.springer.com/article/1...

sciencedirect.com/science/a...

europepmc.org/article/pmc/p...

Jackie

Sushibruno
Sushibruno in reply to Jm954

Most people get infected with EBV And allot of them don't even know it. I would think that the percentage of transformation would be even higher in people with cll. Someone please shed some light.

bennevisplace
bennevisplace in reply to Jm954

Excellent research Jackie!

Sepsur
Sepsur in reply to Jm954

Thank you - a bit of reading & research xx

Abstract of a paper on RT driven by EBV reactivated by immunosuppression due to CLL treatment pubmed.ncbi.nlm.nih.gov/294...

In passing, I was recently PCR-tested for active EBV, CMV and adenovirus because of ongoing cold-like symptoms since finishing treatment with FCR. The only finding was EBV antibodies indicating a past infection (as Sushibruno indicated most people have EBV, usually latent but it can reactivate in immune-suppressed). As no viral DNA was detected my symptoms remain unexplained.

Best wishes to you Sepsur.

Sepsur
Sepsur in reply to bennevisplace

Thank you

Wishing the best results for you Sepsur🙏🙏🙏🙏.

Great post Sepsur 🤣. Praying for good results for you 🙏🏻Dana

Interesting. I had a nasty bout of EBV about three years ago (a reactivation since I had it in my 20’s.) Now I know why my hem/onc was so concerned. I am still watch and wait, no problems since.Kathy

Sepsur,

Because there are some pre-2015 studies that show indications for EBV in Richter's, I too asked this question in a conversation with a highly credible CLL research specialist in 2019.

To my surprise the specialist replied with enthusiasm, that this was a primary focus study for them prior to them entering specialized CLL research and the medical oncology practice.

The pointed response was that although EBV shows a measured presence in Richter's, " With continued research it will more than likely be deemed a passenger, rather than a driver". In the conversation it was also pointed out that the presence of EBV in the overall population having CLL or not, and whether diagnosed, or hosted by a carrier is suspected to be much higher than the actual measured data available.

EBV is one of the most common viruses in the world.

cdc.gov/epstein-barr/index....

JM

Sepsur
Sepsur in reply to Smakwater

That’s very interesting too.

I must have been one of the few people on this earth who didn’t have EBV - I caught mine in ICU. The infectious diseases team confirmed what I came in with ( & what I left with - which was much much more) the irony is that I grew up on the fringes on the entertainment industry where a clean Sunday school upbringing was rare and yet I had missed any hepatitis, stds, hiv, herpes etc etc but caught HHV6, EBV, MSSA, cmv, VRE & glandular fever in ICU

Smakwater
Smakwater in reply to Sepsur

I caught it back in 1969 when I was 9 years old. At that time the hillbillies called it the kissing disease, and our Doc's called it infectious mononucleosis.

I don't recall kissing that much back then.

Smakwater
Smakwater in reply to Sepsur

Forgot to ask who you were kissing in ICU?

Sepsur
Sepsur in reply to Smakwater

As I said to Jack - it was obviously the nurses

Just wanted to add my good wishes for excellent results with your CT scan.Take good care :)

Nan

Sepsur
Sepsur in reply to nvp815

🙏😊

I thought this website was about CLL, I guess I cannot get answers here any more.

Sepsur
Sepsur in reply to LovecuresCLL

🤣🤣

Thanks everyone with their replies. It would appear from anecdotal evidence that my teeth have been weakened by icu and the body trauma of ICU. Maybe linked to hypoxia but more likely down to sepsis and the regime of antibiotics used to treat it. It would also appear to be a delayed response, rather like telagon effluvium.

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