Enquiry

[sweetromeet]

My dad is a cll patient which was detected in dec last yr.He is now on ibrutinib tablet 1 everyday .His readings of WBC has come dwn from 500000 to 30000.But as he has to undergo tooth extraction ,he is off ibrutinib for 9 days .bt his lymph nodes on the neck has increased.Pl suggest.

[AnneHill]

Hi, I have been taking ibrutinib for exactly 1 year. I also had to stop for a couple of weeks whilst I had a small procedure. It didnt make any difference to my numbers and I felt fine.

Is it possible your Dad could have an infection? Maybe in his gum or elsewhere? This would explain why his glands are enlarged.

Seems he is responding well to the ibrutinib and will soon be back on it. Many of us have had to interupt the treatment and if there is a problem it will show on his next bloodtest.

I hope all goes well, Anne uk

[cllady01 Former Volunteer]

sweetromeet, As Anne has said, infection can cause the enlarged nodes in neck. With tooth extraction, there may be an infection, so hopefully he will get an antibiotic for that procedure. Actually, he should be given one before the dental procedure to start it working . If you can do so call the Dr. to let him know of the neck nodes swelling and the dental situation. Ask for antibiotics.

I hope all goes well and you get the assistance you need. Your devotion and care for your father in this struggle is admirable. Thank you for that care and keep us posted on how it goes.

[sweetromeet in reply to cllady01]

Hi..he had been on antibiotics for 5 days..and out of ibrutinib for 5 days..bt still his nodes on the neck is increasing and severe back pain.We have done the required tests also before the extraction,PT,BLEEDING TIME,Inr and appt.Everytg is fine.But severe pain in the back

[AnneHill in reply to sweetromeet]

Your Dad needs to see a doctor to see if the back pain is connected to the cll. Not having medical knowledge I know that back pain is agony from my own experience. It needs investigating to make sure its not an infection. Kidneys? Anne uk

[Jm954 Administrator]

Hi there,

It's not uncommon for the lymph nodes to increase when you come off Ibrutinib, especially if you haven't been taking it for very long, as in your father's case.

I'm not sure what dose 1 tablet is as there are various strengths but he appears to have had a good response and when he restarts I think we can be pretty sure his nodes will go down again as he continues his treatment.

All the best

Jackie