Hi I am Deedee, new here. I have had CLL since 2013. I am a 59 year old woman. My WBC has always risen and about 8 months ago when it reached 80,000 my Dr, said we would need to discuss treatment by the next visit as I have never went down in count only up. I have stayed at 80, 000 there about for the past few months , not going down or up. I have always had swollen nodes and am determined to survive I have two teeth that need root canals and I wear a flipper because I was told an implant would be too invasive. I felt it is best to get them extracted as the bacteria is on the inside . I am moving into a new home we bought and am putting off oral surgery until after Christmas. I know it will take time to heal and I am afraid I wont have the energy to move into our new home and that this extraction it is a non emergency , I am putting it off until January, Has anyone had teeth extracted and besides risk of infection is there anything I should know about extractions on us who have CLL?
CLL and Teeth Extractions: Hi I am Deedee, new... - CLL Support
CLL and Teeth Extractions
Hi DeeDee Welcome to the family. I have had dental work but not extractions. Best practise to discuss with your dentist and ensure that they are aware of your condition. Good luck.
Thank you so much , I am new but so grateful to have found this group . Thanks again Jacksc !
Hi DeeDee,
Welcome to the group - that no one wanted to join, but are very glad they found!
You say you have two teeth that need root canals, but you want to get them extracted “as the bacteria is on the inside”.
Is that what your dentist suggests? Have you talked to your haematologist about it? I say that because it might be possible to have root canal treatments (with antibiotic cover) and save the teeth. You don’t want to lose any teeth unless you really have to.
I had a root canal done while on “Watch and wait” and it was OK. I also had an extraction done in between CLL treatments, but I would have gone for a root canal for that one if it had been possible. I only had it out because a root canal would not have worked for that tooth. The extraction was relatively easy and I had no problems. My platelet count was OK and I had no problems with bleeding afterwards. I had antibiotic cover for both the root canal, and the extraction.
Re the timing of your treatment - if your WBC has stayed around 80,000 for a few months, are you sure that treatment is really necessary at the moment? Are your swollen nodes becoming more troublesome? Do you know what your other blood counts are (eg haemoglobin, neutrophils and platetets).
It would certainly be good to discuss the possibility of treatment at your next appointment, but don’t assume you need treatment just because your WBC has reached 80,000.
The decision of when to start treatment is not always straightforward, and if your doctor is NOT a CLL specialist, I think this would be the time to see a specialist, and get a second opinion.
Wishing you all the best as you move into your new home.
Paula (in Sheffield, England)
Thank you Paula. I do see an Oncologist every 3/ 4 months. I made the decision to take the teeth out as a root canal is not affordable as one reason and I can work with a partial denture. I do take good care of my mouth and teeth in it. I had a saliva gland infection recently. I was treated with antibiotics, I go to University of Michigan dental school and they are good .I am on an upswing in a way with my CLl as far as having more energy . I take care of myself best I can . My husband has been vegan for 30 years and I eat well. I am new here and did not expect much response . I have been dealing with my illness and alone and it has been difficult. I am glad I came across the page. thank you ever so much Sincerely , dee dee
welcome, these guys are THE BEST.
yes, my wbc was double that and the hematologist wanted to start for a year before that! finally i said maybe but specialist first... who said he would have sent me home (no treatment)... except i also had CML (different treatment/start upon dx), ... which the hematologist missed in his own report — i don’t see him anymore, i see the specialist.
i’ve had teeth extracted, etc, no problem.
i’m supposed to have Mohs surgery any day now. Just had a big tooth worked on, she gave me an antiboitic just in case because it was close to nerve, she said. Never got it filled, don’t need it.
on the Mohs, a friend who DOESN’T have these diseases said be sure to get an antibiotic up front, he got infected (lip).
my wbc is way down now...
my other numbers were always ok... except the differential stuff(?)... ___phils, but they're better now, i guess.
Wow, that is really helpful. Here my Hematologist and Oncologist are the same Dr. I am thinking of getting a second opinion just for peace of mind and just that, another opinion. My husband passed of Liver Cancer in 2001. I was so strong ,younger then and so on top of it dealing with all the systems. I am learning so much here from you and everyone. It has been something I have been dealing with alone, I just want these teeth out yet am in the process of getting out of the very small place I have lived for 5 years and this house I will be moving into will give me room to move my blood. I so want to live and have more time.. Thank you so much , Sincerely
, dee dee
Hematologist/Oncologist is what i meant. it’s quite OK (i got “petmission” right here from this forum) to ask mine (Florida Cancer Specislist) ARE YOU OR DOES YOUR GROUP HAVE A CLL SPECIALIST?
he told me he would do the SAME THING. so off to Moffitt’s Dr Pinilla i went, just for a consult. — Where he asked why I was there because the CLL wasn’t going to be discussed (much), that i also had CML and that that is treat upon dx.
i had never given a bmb and said he could have ONE. —i had been going W&W to that other place for 3.5 years.
the first hema/onc i had there, older guy, said i might outlive it. then he retired and i got a new young guy. i KNEW immediately he was trying to get me to take Imbruvica. he tried twice and last time i believe he was going to “let me go” if i declined. so i asked if he was a CLL specialist. because friends HERE, told me to!
the hema/onc TOTALLY agreed, but seems I HAD TO ASK.
damn good thing i did, it’s a different medication. Imbruvica is not for CML!
My CLL is not being treated.
my wbc is 20 something. it was almost 10x higher. but again, that isn’t key to treatment.
i think it depends much more on your markers. i do have a few markers (11q/13q/cd38-/zap70+/umutated/21%) but not the (CLL) worst one(s). (CML is BCR-ABL.)
Best to get your teeth in to good shape before treatment. Have you told your dentist about your CLL? The dentist needs to know to avoid infection after treatment.
With CLL good mouth hygiene is important so regular hygienist sessions are needed.
Best wishes
Thank you and best wishes to you. I go to UOM Dental school regularly , healthy mouth Just concerned and wondering if anyone who has had teeth removed have had any issues with CLL. and infection. I have bouts of fatigue and have been doing well lately . Thank you so much dee dee
I had in September open shoulder surgery and no problems with infection at all. I know it’s a different scenario but it proves we with CLL are quite resilient if all know we have CLL. Obviously the antibiotics given during the operation worked. Your dentist may decide to give you antibiotics also either before or after dental work.
That is good to know ,
Welcome, deedee,
Do ASK for antibiotics, since the root canal means infection, it might be preferable to have antibiotic before and after. Talk with your hematology oncologist also, to help with the possibility the dentist doesn't think you need antibiotics.
Our poor immune systems are part of CLL disease.
Thank you Clllady, my primary Dr. has given me antibiotics to take in a large dose right before the oral surgery and they said they will give me them after at the dentist. I sure appreciate you and everyone great advice Thanks again!
Welcome DeeDee. You’ve been given good advice here. Most importantly getting a second opinion from a CLL specialist is a must! Good luck with your move.
Pam
Thank you to welcome me, Pam . I like the idea of a second opinion. Thank you. The move I have been waiting for all my life Thank you. dee dee
Which cancer center do you go to? I live in Michigan and go to Beaumont Cancer Center but consult with Dr. Malik at U of M. He does research and only sees patients on Fridays. You might consider calling for an appointment and ask to see an associate in order to get in quicker. Since you are in the system, you may have a medical number to give them. Clinic: 734-647-8901.
I have had some dental work and my dentist is aware of the CLL. He always has me take 4 amoxillin pills before any dental work.
When I was diagnosed in 2007 doing chemo I swore I could tase it in my mouth (the chemo) and reading the side effects the teeth situation is up there so anyway after being in remission For three years I began having problems with my teeth I remember running my tongue across the the back of my teeth and it was smooth like melted or something I went to the dentist first question after examining my mouth was are you/have you had chemo... I said yes he could move my teeth with his fingers so it was let them fall out one by one or come up with a game plan... I was 35 at this time so 22 extraction and partials is what I choose sounds crazy but I had no problems with infection
Deedee, I also live in Michigan and we have had fantastic experiences at the University of Michigan. Your case is being monitored by world-class dental professionals. Being at a teaching hospitaI is such a positive thing and your case will help dental students learn more about taking care of the teeth of people like us. I wish you well. Go Blue!
Hi Dee Dee - I had two back molars extracted two weeks before starting my treatment (targeted meds) with antibiotics prior to the extractions. Had no issues at all. Best to take care of it before you've started treatment....I would have had to go off my meds for a while before and after the surgery had I waited.
A couple things to consider with CLL and dental extractions: are you otherwise a good candidate for extractions? If you’re taking bisphosphonate meds (e.g. for osteoporosis), you may not be. Your neutrophils, red cell and platelet count are important because with extractions the three main concerns are bleeding, post operative infection and ability to heal. A med consult with your physician and recent bloodwork are essential. Antibiotics and an antiseptic irrigation (e.g. chlorhexidine 0.12%) should be used as directed by your dental student and their attending faculty. If the teeth are save able with root canal treatment I’d strongly consider it. Extractions can have a domino effect because the teeth that remain are more highly loaded. It could be that the teeth you describe are mobile and would be easily removed; it could also be that they’d be difficult to remove depending on several factors. I’ve been a dentist for 22 years and am also a CLL patient now. Ask a lot of questions, be sure and have a med consult and know that whatever you choose the risks of dental extractions are generally manageable. Be well. Tom
hi Dee Dee,
just another point that came to my mind,
Occasionally there is excess bleeding after tooth extractions, especially if the teeth are a bit hard to get out. Your dentist might consider checking your blood clotting times and platelet levels, to make sure there is no problem that might increase your risk of bleeding.
It sounds like you're going to a very good dental school and I'm sure you've told them you've got CLL, so hopefully there will be no problems. Remember to get antibiotic cover and follow the standard instructions afterwards. (eg No mouth rinses for first 24 hours, to let a clot form in the socket, then frequent warm salty mouth rinses afterwards, to reduce chances of infection).
Paula
I had a tooth extraction before starting FCR. Went well. They gave me antibiotics pre extraction I also received a bone graft for eventual dental inplant but never went through with that procedure as I started FCR treatment and presently on Imbruvica. It’s a back tooth fortunately.
Interesting, I was diagnosed in March 2016 and at the time was enquiring about an implant, as I had a post crown on one of my front teeth which was failing and a replacement was unlikely to be successful.
My dentist was aware of my condition and was happy to proceed with an implant in late 2016. He extracted the remains of the tooth. After allowing adequate time to heal, he fitted the implant and gave me antibiotics as a precaution. He carried out a root canal with antibiotic on the adjacent tooth as it was causing me pain, there have been no subsequent issues.
I had my check up in March, a year after the implant procedure was completed and all was well. This was just prior to starting FCR chemo this April, my dentist prescribed a Gingival gel again as a precaution for use during my chemo.
Post chemo I have not had any issues with the implant.
Hi DeeDee (That is also my wife's nickname). Welcome to our world. Once you are on a treatment schedule you may find that the meds you are on change your blood clotting ability. Make sure your Dentists, AND you Hemo/Onc specialists are all in agreement as to whether you should temporarily stop you treatment until after you heal from the teeth being removed. Perhaps they would prefer to work on your teeth before starting blood treatments. Some treatments thin the blood, and make clotting more challenging.
Everyone on your "team" needs to work together for you best results. Keep us informed.
I recently had an emergency root canal. I was given a strong antibiotic to take for several days. I agree to try to save the tooth or teeth if possible. I always tell any physician that I have CLL.
I am a retired Oral and Maxillofacial Surgeon. Seriously consider the root canal treatment at the dental school as that should be within reason financially. Discuss with the surgical department your diagnosis of CLL. they will know how to treat the dental problems and whether or not supplemental antibiotics are indicated. I wish you well.
I have just had minor fillings. Hematologist stated if i had a port catheter, I would need antibiotics. I would for sure want antibiotics for a extraction. The mouth is way to close to the heart and large blood vessels.. With CLL I wouldn’t want to be septic. Welcome to this site, I have learned so much. It’s like having a bunch of friends that offer knowledge and love.
I've just passed my 12 year anniversary on W and W. Had a wisdom tooth extracted earlier this year without problem but three weeks ago had a large molar extracted. It had been crowned many years ago and when the crown came off a second time, there was really no tooth left to put it back on, so it was deemed best to extract it. I'm afraid it then became a horror story as that was a difficult extraction. Went back after 5 days due to excruciating continual pain and was advised I had dry socket. This was treated but two days later it started to bleed again profusely and I had to go to an emergency dentist. It took them 55 minutes to stop the bleeding, remove the packing for dry socket and stitch the wound. They called my husband in and said if it started to bleed like that again I must go straight to hospital. Five hours later it started to bleed again and I had to go to hospital. Blood test showed that my haemoglobin, platelets and neurophils had all dropped in the last three months. I really have been extremely ill and I'm having weekly blood tests to make sure neurophil count is improving (had dropped to 0.6). This has taught me to make sure in future that I have a blood test a few days prior to ANY dental work. My dentist is fully aware of my condition and always checks how I am but of course I have been fine for virtually 12 years and had no reason to think that there would be a problem when we decided on this extraction . I have learnt my lesson and would not want my worst enemy to go through the pain I have experienced!
I've had CLL for about 5 years. Routine blood test showed my white count at 14. Was sent to an oncologist who had more blood tests done and told me I had CLL. What's on watch and wait until it got to 132. At no point was I showing symptoms but I was put on Ibrutinib. Became severely ill and ended up in the hospital. White count had gone up to 302,000. During the past year it has consistently gone down as of about two weeks ago it's down to 18. I have a bad tooth that needs pulled and I've been to three Dentist and they won't pull it because of leukemia. And this is in spite of my oncologist said yes I can get it pulled and gave me an antibiotic to take for 7 days during whenever I get it pulled. The moral of the story is if the oncologist says it's okay then as I'm trying to do go ahead and get it done. And it's encouraging to read on hear other people saying that it's not a problem to be worried about.
Thank you for bringing up this topic. I have developed 2 cysts on my back upper teeth. Has anyone else had this problem.My dentist wants to remove both teeth but is consulting with my haemotogist first.
CLL and CFS
CoVid 19 and CLL
CLL and Dizzy spells
Teeth! 
Causal Link with Pesticide Exposure and CLL
