So I have been confirmed with CLL a week ago. I already had my first ever "deep" dental cleaning scheduled for mid April. I told my hematologist/oncologist about this and she said it's fine for me to a have it done and no need for antibiotics before or after since I'm not yet immunocompromised. Have any of you CLL patients had this procedure done before ? If so any special things I should be aware of or plan to do on my own before or after? It will be done in 2 appointments a week a part. Thanks!
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NancyJ4
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You are immunocompromised with CLL, but to what extent you will figure out with time.
Unless you have low neutrophils and/or a history of frequent infections you will be fine.
I finally made it to the dentist a few weeks ago after not going since 2019. I hid away from the world during covid and didn’t want to do any procedures during my CLL treatment.
The cleaning was unpleasant, but went well. The only reason I ended up on antibiotics is that it turned out a molar was broken clean in half so they had to extract it and put in a bone graft.
I am trying to get as much dental work possible done before I start treatment again. I hate the idea of needing to pause CLL drugs for an implant or something invasive.
Thank you for the response. I have had several normal dental appointments in the last several years, (always twice a year for normal cleanings and a few times for small fillings), but never the deep cleaning. I just found out last week that I have CLL. My Hematologist/Oncologist thinks things have been brewing for maybe 5 or 6 years but for sure at least 3 years. I have never had any symptoms and no one brought my elevated WBC to my attention until this last October after I had a pacemaker surgery so I had no idea that I possibly had a serious issue. All I can say is that my H/O doctor said that because I am "not currently immunocompromised" that I do not need antibiotics for the deep cleaning. A flow cytometry confirmed the CLL but pretty much all the other many tests (except my WBC of course) and blood counts they did on Feb. 4th came back normal so I'm just in W &W for now. My glucose was also elevated. I'm also wondering if things might improve a bit with my WBC after the deep cleaning.
Your haematologist-oncologist is incorrect in stating that you are "not currently immunocompromised". Immunocompromise begins with the precursor to CLL/SLL, Monoclonal B-cell Lymphocytosis. It would presumably be more accurate to state that your degree of immunocompromise is unlikely to be an issue. See: healthunlocked.com/cllsuppo...
It's good that you are proactively looking after your gums.
Thank you, I tend to agree with you about the comment about me not being immunocompromised at this time and was surprised by that. I will bring it up again the next time I see her for a further explanation as to what she actually meant.
I just recently had gum surgery (not fun at all!) for receding gums on my front bottom teeth and prior to this I did have a deep cleaning, I had no issues at all. Some problems can arise with healing times, I do find everything takes a bit longer to heal than it use to, but nothing my body couldn't handle.
I think you'll be fine! Deep cleanings are no fun, but you also don't want to have to do the gum surgery! I wish you good luck! 💕
Thanks. No I don't want the gum surgery that's for sure. Sounds dreadful. I had braces as a teenager and that did cause some gum recession. The gum surgery has been touched upon but I have said no, so that's part of the reason for the deep cleaning at 75 years. Thanks again for your response.🙂
For at least 20 years I have been getting a regular cleaning at my dentist’s office twice a year, and deep cleaning at my periodontist’s twice a year. The first time was the worst, but call me crazy, I actually look forward to the deep cleaning now. I’ve never taken antibiotics for it and have never had an infection (on W&W for 8 or so years). I’ve also had gum surgery for one receding tooth for which I believe I did take antibiotics but it was no big deal, either pain wise or in healing time.
Whether you need prophylactic antibiotic coverage depends on your degree of immunocompromise and your specialist's and dentist's personal position on this. Some dentists are concerned at the overuse of antibiotics, others won't allow dental cleaning unless your have a healthy neutrophil count or take a high prophylactic dose of antibiotics prior to cleaning.
I've attended 3 different dentists since I was diagnosed with CLL/SLL following an investigation into what was causing my severe, chronic neutropenia. The dental practice I attended when I was diagnosed stopped my dental cleaning appointments, concerned at my risk of sepsis from septicemia (bacteria entering the blood stream during cleaning) because of my neutropenia. When I eventually needed dental work, my CLL haematologist recommended I take one high dose of amoxicillin prior to any dental work, including cleaning. My current dentist insists I still have antibiotic prophylaxis if I have neutropenia, but thankfully treatment pretty well cured that
Thank you. So my Neutrophils a week ago were slightly high at 7.09, my Lymphocytes were high at 8.61, Eosinophils' slightly high at 0.51 and Monocytes were normal a 0.00. My hemo/oncologist doctor said I don't need antibiotics and my dentist has accepted that idea so unless something changes between now and the dental appointment I will be having it. I don't go back until early May for my next blood draw.
Hi Nancy, Those are enviable numbers. I realize you're new to this diagnosis (dx), so I completely understand your concern and diligence. I'd be thrilled to have those numbers, especially the robust neutrophils. Personally, I'd be more concerned about making sure my vaccines were up to date (covid & flu), and would ask the dentist & assistant to wear masks. (I got switched to a new dentist and was surprised that I had to request he wear a mask during the exam.)
Doing what makes you feel comfortable & safe will always be the best way to go. CLL specialists (and HU members) remind us often that gum disease is one of the insidious ways that infections can infiltrate our immune systems. I had to have a deep cleaning in 1997 and have been a serious flosser ever since!
Re dental cleanings you may want to check out Dr. Ellie Phillips and her videos on YouTube. She has interesting things to say about it. She's a very likeable dentist . My own experience says she's right about it all. I haven't needed any cleaning since following her advice. No plaque buildup whatsoever. My dentist was surprised.
LeoPa, I note you've referenced yet another YouTube influencer. They have half a million followers, so will benefit from significant advertising revenue in addition to sales of their advertised books and supplements. Of concern is their belief that dental caries (cavities) can be naturally healed. That may be possible with small cavities, but not if they progress too far.
It's very important to maintain good dental health when we have CLL - we don't want bacteria getting into our bloodstream as Jm954 stated. Living with CLL, puts us at increased risk of sepsis (e.g. from a tooth infection), which can be quickly fatal. From, with my emphasis, Outcomes of Patients with Chronic Lymphocytic Leukemia Admitted with Sepsis: An Analysis of National Inpatient Sample Database ashpublications.org/blood/a...
"Among patients with CLL who were admitted, the most common principal diagnosis (reason for admission) was sepsis, accounting for 12.9% of all CLL admissions. Other common reasons for admissions were pneumonia (5.4%), acute kidney injury (2.3%), NSTEMI (1.8%) and COPD exacerbation (1.8%). A total of 9,315 admissions with sepsis in CLL patients were identified (780 in remission, 8280 had not achieved remission and 255 had relapse)."
The challenge with dentistry, is that it is very difficult to know for ourselves whether we have healthy teeth and gums. Australia has a consumer advocacy group that occasionally reports findings from a group of people who conduct a survey a random selection of dentists for a report on their dental health. The estimates of what, if anything needs to be done, typically vary widely per patient, as does the estimated cost. That accentuates the importance of having a second opinion if your dentist recommends expensive dental treatment.
My personal anecdote; I had a trusted dentist, who suggested I see his new, young partner. That dentist recommended I have a crown and filling replaced. I had an appointment arranged, but was advised to cancel, because it was scheduled the day after I'd been released from hospital, following emergency IV antibiotic treatment for cellulitis. Due to moving, over the next 10 years I've attended two other dentists. I ended up getting a filling replaced (might have been the same one), around 4 years later and my current dentist doesn't see the need to replace my crown, 11 years on. (I actually saw that dentist in an emergency visit from hospital, when I was again on IV antibiotics for febrile neutropenia, wondering if it was due to a tooth infection. He found nothing wrong.
Can we differentiate between influencers and professionals? A dentist with 4 decades of practice is not an influencer when it comes to dentistry. Would you call Eric Topol an influencer if he was trying to educate laypeople through a YT channel? Not everyone is capable of reading research papers.
As for the monetization argument - I wish everybody worked for free, but does anybody? Does or did any of us? As long as someone is providing a useful service, I see nothing wrong with him making some money off it. It's a service. Making good quality YT educational videos costs a lot. Teams of people work on it.
As for the risk of infections - is it more risky to have a deep cleaning or not needing to have one? I didn't say people should not have their teeth checked and let a gum infection fester. I pointed out a tried and tested way of keeping the teeth and gums healthy so that we don't need them deep cleaned. But they still need to be regularly checked. I have mine checked every year and the last 2 years my dentist said I don't have any plaque, so no need to remove any.
And most importantly, I don't make money off of sharing my experience.
Am I or am I not an influencer in your view then? After all I'm not a dentist, just a guy with teeth who knows something most people don't, and learned it from someone smarter than himself. A dentist, no less. Just the way you learn from Topol and then sometimes share what you learned.
Approach YouTube with caution? Yes. Is there only worthless junk? No. Depends from the content creator. It's just a platform. Like TV or newspapers or research papers are. Some info presented on these platforms is valid, some is nonsense.
LeoPa, as you say, "Some info presented on these platforms is valid, some is nonsense." So it's not a question about differentiating between influencers and professionals, but determining what is reliable advice for someone with CLL to take to their doctor or dentist for concurrence before they adopt it, or at least appropriate monitoring when they decided to do so, when professionally advised that doing so may not provide the hoped for benefits. Medical science isn't built on just what one person claims works, but by independent verification! Reading research papers is a learned skill and isn't easy, but when someone recommends doing something, claiming very impressive results - well that deserves closer scrutiny. Searching out meta-analyses is a very good way of seeing whether what is promoted and the claimed results are likely, or whether there's probably some other reason for the claimed results.
As for the monetization argument, if you haven't already done so, do a google search for the expected income from some of those you follow on YouTube for what they derive from YouTube advertising. You may be in for a surprise! Also, as to why people chose to set up YouTube channels, some do it for free, counting the income as a bonus, particularly if they are retired. With regard to selling supplements, I've had a couple of decades of experience in observing people offering alternative medical services to close relatives with poor health who were not helped by standard medical care. Those experiences have made me very wary of anyone diagnosing a condition for which they also sell the recommended remedy. We've recently seen this with ivermectin and COVID-19 - from medical professionals, non the less. Some of them were accordingly struck of medical boards.
Many of us here are freely supporting other community members, including all our volunteers and admins. People choose a medical career for a variety of reasons, often stemming from a deep desire to help others and make a positive impact on their lives while some are more attracted to the financial and community respect aspects of a medical career.
Professionals often are required to engage in continuing professional development activities. For example, see the Australian Health Practitioner Regulation Agency website
Continuing professional development (CPD) is how health practitioners maintain, improve and broaden their knowledge, expertise and competence, and develop the personal and professional qualities required throughout their professional lives.
Health practitioners who are engaged in any form of practice are required to participate regularly in CPD that is relevant to their scope of practice in order to maintain, develop, update and enhance their knowledge, skills and performance to help them deliver appropriate and safe care.
Studying and providing lectures is one way health practitioners can gain CPD credits, without which they may risk losing their accreditation.
When you state that "Making good quality YT educational videos costs a lot. Teams of people work on it.", yes, there's the investment of several hours of time, but having teams working on it would be the exception and would likely be when there's a business involved, with the associated income and taxes.
With respect to dental health, you are correct that we need to have that regularly checked. This was considered important enough to make it into our list of30 tips for living well with CLL
21) Tell your dentist you have CLL and have regular DENTAL CHECKUPS – don’t leave pockets of infection in teeth or gums.. Regular dental check ups can almost halve the risk of pneumonia in the general population.
All of us posting need to be aware that what we post may influence other members - hopefully for the better. We do however need to appreciate that everyone's circumstances are different, so what works for us, may not be relevant or even dangerous for someone else to do. Importantly, there's a big difference in our risk of infection from when we are an early stage to when we are in treatment, neutropenic or have hypogammaglobulinemia - and that's before considering co-morbidities. That's why the HU warning in their Terms of Usesupport.healthunlocked.com/...
3. Medical advice
Our Site’s Content as well as any content on other sites linked to from Our Site, including in any community is not to be construed as medical advice or professional medical opinion and is never a substitute for professional medical advice. Even if another user appears to be a medical professional they are not in a position to undertake a physical examination or understand your full medical history. Therefore, you should always speak to a doctor or other health professional about your condition and/or treatment or changes to your condition and/or treatment.
"So it's not a question about differentiating between influencers and professionals, but determining what is reliable advice for someone with CLL to take to their doctor or dentist for concurrence " - Neil, in this particular case I disagree. Professionalism and reliable advice are very much tied at the hip. What I referenced is a zero risk intervention. There is nothing to lose but everything to win. One does not need to be a dentist to appreciate this. Everybody can wash their teeth twice a day and chew a xylitol gum after. Where is the danger in that? Plus, no cleaning needed (since no plaque) means no risk of infection and no expenses at the dentist's office. Our US members can compare the price of xylitol gums to what they pay for a deep cleaning and do the calculation for themselves.
Producing YouTube content makes money for the content creators. I have zero problems with that. I'm not envious. The ads pay for what I get for free. And I get a lot out of the good content. Deciding what is good content and what is bad content is a learned skill too. I only reference good content 🙂.
Regarding anti parasitics - Ivermectin, Mebendazole, Fenbendazole and the like. They are also glutamine blockers. Since it was often not Covid that killed patients but the cytokine storm caused by overreaction of the body to the virus, and glutamine blockers have a tendency to weaken the immune system (glutamine is important for a strong immune system), I believe that in some of the cases, perhaps many cases, the immune suppression caused by ivermectin could have tipped the scales towards not having an extreme overreaction and cytokine storm in reaction to the virus, thus helping patients to survive. Back then there were no vaccines or medication available. We were grasping for straws. I know people who swear that they got better once they started to take ivermectin. So it wasn't all just noise about ivermectin being helpful.
LeoPa, I omitted to include that professional bodies typically include a requirement that their members agree to ethical marketing endeavours. I haven't viewed the YouTube video, but I did see that the dentist concerned has started her own association. If she encouraged people following her protocol to still maintain regularly dental check ups, which also verify the lack of plaque, then fine.
Your final paragraph again stresses the value of checking meta-analyses. Yes, early in the pandemic the world was investigating everything they could and repurposing medications with a known safety profile with a promise of helping was an excellent strategy. The challenge with COVID-19, was that how sick people became varied from being asymptomatic to dying from the illness. How ill people felt considerably overlapped with factors also strongly influenced by the placebo effect. So people could report feeling better while blood tests and x-rays, etc., told a different story - no statistically significant difference between those taking ivermectin and those not. See: healthunlocked.com/cllsuppo...
Back when I was at college we had a philosophically inclined prof. He used to say that there are lies, damned lies and then statistics 🙂. I approach them with caution. There are always way too many variables in statistical groups. My hemato oncologist told me that CLL statistics are important for the insurance companies but they are not necessarily useful in my individual case. I have nothing against meta-analyses but unless they prove cause and effect they are not very useful.
LeoPa, with respect to your final sentence, "I have nothing against meta-analyses but unless they prove cause and effect they are not very useful.", what's the logic of passing on what you hear on YouTube, if cause and effect aren't proven?
Neil, In this particular case cause and effect are proven. And well explained by Dr. Phillips. A single step intervention with a defined outcome. Hundreds of patients including me can attest to that.
As I said above, "Medical science isn't built on just what one person claims works, but by independent verification!", which in this case should include our dentist, given we can't easily check for plaque, let alone cavities, particularly between our teeth.
Sure. Not 1 person. Hundreds of persons. One only needs to read the comments under the explanatory videos. I tried it, it works, I don't need a scientist to tell me whether it works. I already know it does.
This deep cleaning sounds like dentists rather too keen on income. I am approaching 79 and have never been told I need this. In addition, taking antibiotics for what seems like a non-hazardous procedure is destroying the efficacy of this medication. Since I moved away from the city, my dentists have been far more relaxed. In five years I have never had sore gums, unlike when I was in the city.
The issue with deep cleaning is that it's quite invasive and this can release large number of bacteria into the blood stream.
That can lead to endocarditis which can be serious especially if you have problems with your heart valves already. Symptoms of endocarditis usually start within 2 weeks of the procedure and are typical flu like.
I had endocarditis in 1974 after dental work. I always had antibiotics before and after dental work. Now the AMA does not require. With my CLL/SLL I do not have antibiotics except when I had 2 grafts and a deep cleaning several years ago.
I have not had deep cleaning. However, I did have 18 teeth extracted and dentures put right in. The gums healed quickly and I had no infections without taking an antibiotic. I've been on targeted treatment for 10 years. I hope that this helps.
I should have explained that all my teeth were infected below the gumline. This was caused from all my different meds. My teeth above the gumline were yet to get infected.
HI Nancy - I also do periodontal deep cleans (that usually involve some bleeding) every 9 months. I started ibrutinib treatment for CLL 4 months ago and have postponed my scheduled appt a few times because I haven't been feeling well. My hematologist had told me to stop the drug for 3 days before the cleaning and resume it the day after. My CLL specialist told me that I do not have to stop the chemo and that it was safe for me to proceed. I want to talk to my periodontist before rescheduling. I always take antibiotics for dental work due to a joint replacement. Wish I could be of more help, but wanted you to know that there seems to be some inconsistency in the approach.
my dentist won't work on me if I don't take the antibiotic. we are immunocompromoised so its not difficult to take two antibiotics before a procedure--a lot of germs in the mouth!!!
Hi Nancy. I will make part of my story short. Lost husband in 2010 after long battle with cancer. Two years after (2012), I was diagnosed with Waldenstroms Macroglobulemia. I had many rounds of chemo (Bendamustine, Rituxan, etc). In 2016, I had congestive heart failure. I have asthma, so I thought it was my asthma when I was wheezing at bedtime. I had my arotic valve replaced with an Edwards Sapien Pig Valve via TAVR.. Due to all my blood issues, TAVR was highly recommended. I have my teeth deep cleaned twice per year. My cardiologist told me IF I get just the smallest infection in my mouth, he can almost guarantee me, I will die. I must take 4 (500mg) of Amoxicillin before my dental appointments. I am very conscious about how important flossing, etc is and practice good dental hygiene. I was diagnosed in 2023 with CLL (on watch and wait). I also have Stage IIIA kidney failure. Hematologist/Oncologist, seems to be very reluctant for treatment even though bloodwork changes and fatigue worsens. I imagine I would need a treatment that would not further damage my kidneys, etc. I recently turned 79. My husband, Tom, was the BEST THING in my entire life. He truly was a gift to me and his sister, continues to be in my life...thanking me for loving her brother. I know I have mentioned this prior to in replies, BUT what KEEPS ME GOING....are those little faces we see during the St. Jude tv commercials. One out of five of those little ones will NOT win the fight. I have had a chance at life. The little faces we see may NOT have that opportunity. So.....what right do I have to feel sad for myself or put my head in a depressed state? One day at a time....and make the very most of each day. Have a wonderful weekend.
I just had a cleaning and 2 cavities repaired in the last 2 weeks. My face ballooned up significantly from having a deep cavity fixed so I had prescription for antibiotics filled. I'm 100% fine now. I'm been on Imbruvica for almost 5 years.
Although our situations are different (I have had CLL and have been on treatment for years),I believe since you do have CLL you are considered immunocompromised. Please check with your hematologist before your deep cleaning, you may very well need antibiotics.
I did have a deep cleaning and laser surgery in mid 2024 and did need to take antibiotics before the cleaning/surgery.
Yes, I asked my hematologist/oncologist about the deep dental cleaning the day she called to confirm the CLL and she said I don't need antibiotics. That said, I think I'm going to ask my dentist to prescribe one anyway if she will, just to be safe. Thanks for your input.
I'd draw the line in the sand on it if you're convinced it would be to your detriment. It's not fun to look at your relative in a coma from sepsis, knowing your aunt died from sepsis the month before.
Unless you absolutely positively without a doubt have teeth and gums in really bad shape (multiple deep pockets, 5mm or greater)
and haven't followed a regular schedule of "normal" dental cleanings over the years, I'd be very wary of going the deep cleaning invasive route.
There's quite a lot of information that dentists have latched onto this money maker, especially corporate dental chains out to maximize profits and pushing what amounts to an unnecessary procedure that some believe causes scar tissue formation that makes future healing difficult and opens the immuno compromised susceptible to problems.
I go twice annually for regular dental cleanings and yes I do have a few deeper pockets as well as some gum recession and that's why they recommended the deep cleaning last time I was there. (never had one before) That was before I had any clue about having CLL I have been going to the same dental office for well over 40 years (3 different dentists) so I trust them but I am having some second thoughts about doing anything more than a traditional cleaning. I'm on W & W, so no treatment at this time. I go back in May for my next (second) blood draw/check up with my hematologist/oncologist and my deep cleaning dental appointments are in mid April. Before the dental I head to So. California for week of vacation. Busy and somewhat confusing times for sure. Thanks for your response.
Everyone's experience is different. I agree that the "deep cleaning" route is a revenue stream for many practioners, but some of us end up (as we age in particular) with some serious gum issues that need more than a routine dental cleaning. So the issue becomes, do we neglect our vulnerable gums (risking infection) or find a way to treat them while in CLL treatment.
I agree with you 100%. It seemed important to point out that this, unlike a standard cleaning, is a major personal decision concerning an invasive procedure. I am not against this procedure. And it's not uncommon for some dental practices to push patients towards having this done when a standard cleaning will suffice.
Hi Nancy, I have similar concerns about my CLL and immunocompromised status. I brush at least 2x day, and floss afterwards. I use Peridex (chlorohexadine) mouthwash when my gums are sensitive, and each time after a teeth cleaning. I have found a dental hygienist who is fastidiously cleans my teeth with the least amount of trauma to my gums.
I'm in Canada so not 100% certain that what you call deep cleaning is what my dentist called a scaling and root planing?
I was having a regular scale every 3 months. A deep clean meant my dentist cleaned the teeth below the gum line and applied antibiotics in dental form. I had receding gums, that created some deep pockets around the tooth & gums. The deep plaque removal was to halt further erosion & allow the gums to heal
I also have bone loss. In one area on my upper jaw the level of bone loss means a sinus lift & bone transplant isn't possible. I wanted a dental implant to anchor a bridge or worst case scenario a denture as I have no tooth there. It's also noteworthy there's evidence that CLL can play a role in reducing bone density but the mechanisms aren't fully understood yet. This is speculation on my part but could possibly explain why I've read a lot of posts where people ask about dental implants or the failure of crowns, implants or loosing teeth.
In my humble, non medical opinion, immunocompromised status in early stage, treatment naive people is subjective, due to the heterogeneous nature of CLL. I would always recommend speaking to your health care advisors as there are times when prophylactic antibiotics are medically necessary, I also know increasing antibiotic resistance is a reality too. I am biased though! I was told I was allergic to penicillin as a kid. That limited the antibiotics I could take and my immune system hates erythromycin with a passion, orally and intravenously! You're the expert on your body, you've asked your doctor's, & there's a ton of evidence in this thread. When there's no definitive answer, I learnt to trust my instincts.
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