Dental treatment and CLL

[Leo71]

My husband has been taking Acalabrutinib for nearly two years. His lymphocyte count is around 40 and other blood results normal. His dentist says he needs 4 teeth extracted over the next year or so - 3 teeth in 2 sessions in the Spring/Summer and one in the Winter. His main worries are having to stop the Acalabrutinib 3 times and problems with bleeding and infection and whether his system is strong enough to cope. How have others coped with dental treatment? It would be helpful to hear about others' experiences.

[CycleWonder]

Leo71 - The two of you could discuss it with your CLL Specialist. As long as there are no infections involved, this shouldn’t be an issue. But speak with your CLL Specialist to be sure.

[Sepsur]

I’ve come off medication 7days prior & taken a course of prophylactic antibiotics before & after wisdom tooth extraction.

[Wen_dy]

Hello Leo, I was due to start treatment for my CLL with Acalabrutinib about a month ago but sadly broke a tooth that now needs surgically removed. All x-rays done and ready to proceed except it needs the green light from my Consultant who has said no treatment until the tooth has been removed and up to two-three weeks afterwards. Risks of bleeding, infection and also had to stop taking Alendronic Acid which I take to reduce the risk of osteoporosis but taking this during the period of teeth extractions can increase the risk of necrosis of the jaw. Who would have thought needing an extraction would cause all this problems! …. As a postscript my CLL is very low level, I’ve been in ‘watch & wait’ since being diagnosed 4 years ago but unfortunately I have developed Auto Immune Haemolytic Anaemia which was triggered by the CLL, sadly this condition has had me admitted to hospital four times as an emergency this past year requiring blood transfusions, this condition is very serious for me so at the level you are at where you need treatment it is very concerning when treatment is paused or not even started , sadly we are in an unenviable situation, I just wish my Consultant & Oral Surgeon would hurry up with arranging my dental appointment, it has been 3 weeks since having the examination, I do know they have to discuss my treatment plan but there is such a thing as the phone or email! 🤷‍♀️…..The wait is just increasing my anxiety & worry.

I hope your dental treatment gets completed soon Leo 🙏

[Nucleusman]

best to consult haematologist on this

[Gampo]

Hi, I agree with CycleWonder, you need to get your CLL specialist's input on this. I had a tooth out about 6 months before I started treatment (Acalabrutinib) and it took a toll on my body , didn't feel better for a month. But I've reacted badly to tooth extractions in the past, so I wasn't that surprised - I didn't get any infections, just felt awful. I've tried to convince my dentist to let me have an implant and he's flat refused, saying it's an unnecessary risk and he's worried it would take me even longer to recover now that I'm on treatment. How your husband will fare is dependent on so many factors and your specialist should be able to advise you. Good luck.

[ChristyAnne_UK]

I have had two molars extracted in the past couple of years, but I am still on W&W.... 10 yrs & counting. Anyway, no problems with the extractions at all.

By the way, the Chief Dental Officer for England (interim) is Jason Wong. (Chris Whitty's equivalent for dental services). After an 'intense' exchange with my dentist regarding their (non) wearing of FFP3 respirators, I tweeted him, asking for a meeting, and was astonished to receive a reply a couple of hours later. accepting my request. He followed through, and got his office manager to set it up. Our zoom meeting took place a few weeks later, for a little over an hour. He was very pleasant and open to hearing my views and suggestions, and committed to taking it forward to Dame Jenny Harries at the UKHSA, where he gets his guidelines from for NHS dentistry..

All previous thoughts on the matter had been with a view to the protection of dental staff.. not patients. No thought had been raised at his level before regarding immunocompromised patients. (???!!!)

I have not heard anything further. Just thought that other Brits on here might like to know. His 'X'/Twitter handle is @jasonwong12 (It;s in the public domain, so I have no scruples about sharing that. Just don't contact him all at once!

[Dodger47]

I have had significant dental work done while having CLL and with the symptoms getting worse and moving toward treatment again. Thus, I was not being treated but my CLL was active. I had no problems (CLL related) , even with all the extractions, implants and all that goes with it. I was given antibiotics for two weeks before procedures. My CLL did not seem to be affected one way or another and, health-wise, I tolerated the experience pretty well. I agree with others that it would be good to discuss this with your CLL Specialist. Mine gave me the okay. I wish your husband well and the same good experience I had with the dental work.

[Pacificview]

I had two dental extractions and implants while on watch and wait without issue.Fast forward, nine months into Obin/Ven 1 year treatment. I needed 3 teeth extracted, as it was not an option to wait any longer.I took amoxclav 875 to beat back the infection prior to extraction, and a couple weeks after. I had developed a nasty infection that spread to my front sinus and lower jaw.

I am waiting till a few months after treatment ends before replacing missing teeth with implants.

On the extractions due to infection. My Hemo/Onco had no problem with the extraction as my ANC was normal at the time.

[xv750]

My Dr says I do not need to stop for tooth extraction.

[xv750]

Boy was he wrong!!!!

[Leo71 in reply to xv750]

That does not sound good! I send you our very best wishes.

[xv750]

Thank you! It was bad , took about a month to recover but I made it.

[Eucalyptus22]

I am on Acalabrutinib (4 years) and have had 2 teeth removed in that time, with one being surgically removed. My CLL team gave this as advice:

1. Stop Acalabrutinib 5 days before and after.

2. Dentist gave me prophylatic antibiotics as well as an antibiotic mouthwash before extraction

3. To rinse with saltwater several times a day post extraction and after all bleeding has stopped.

I didn't have any problems with healing. The surgical extraction of the tooth resulted in an incredibly bruised jaw . i.e. completely black! Not a pretty sight.

Hope that helps

Kate

[Leo71 in reply to Eucalyptus22]

thank you. H had one tooth out a few months ago and is due to have 2 more out next week. The antibiotic mouthwash sounds a good idea. His dentist is taking out the teeth because they are very loose so doesn't think there will be much bleeding. That remains to be seen.