Hi all I’m not sure if this is related to CLL but I’d thought I’d throw it out there.
Has anyone experienced loosing teeth as a side effect of treatment (V&R) or having CLL? It may be as I’m getting older (58) and not been the best at looking after them and be totally unrelated. Lost one last month with no tooth ache and 2 more seem to be on their way!
There have been some mentions of tooth problems, mostly chipping as I recall. IDK if blood flow to teeth is affected by any of our treatments. I know with my fatigue I am struggling with brushing mine properly, as well as not exercising optimally. My nutrition was affected for awhile when I had severe GI problems.
If it turns out that there *are* tooth related problems, I would think that people posting their thoughts and observations like you just did, might eventually point to any patterns that exist.
My initial thoughts are, if you have non specific inflammation in your body, or are diabetic/prediabetic, it's possible capillary blood flow can be affected. Especially if you vape or smoke cigarettes.
Additionally, if you have the "silver" fillings that contain mercury, a number of people think these can contribute to, if not cause, gum problems. My understanding is that even though dental silver amalgam has been widely used for decades, no one ever really tested it. Another case of "no acute toxicity" so not much thought about possible long term consequences. Granted, back then people weren't really thinking about long term toxicities to various compounds.
Gingivitis is a potential effect of mercury expose. Whether or not ones fillings are potentially releasing mercury, is another question.
ncbi.nlm.nih.gov/pmc/articl...
SofiaDeo thanks for your reply, thoughts and comments. Yes to a couple of your points. Ex smoker of 40+ years (3 years since I stopped) and a mouth full of “silver” fillings as these were the norm. I’ve had gingivitis in the past but this was only for short periods like a few days but not recently.
I think I’ll have to try and improve my cleaning and try to hang on to the ones I have left. Hopefully I’ll keep hold of my incisors and molars a bit longer.
I am glad you quit smoking, but know that the years of impaired blood flow from the effects of nicotine may finally be showing. So IMo it may be related more to that, than our disease or treatments per se. They may aggravate the condition, but is more probable that the toll from years of smoking is finally showing.
premierdentalohio.com/blog/...
Maybe a water pik type thing, to stimulate blood flow to the gums, will be helpful. I am reading about how there is one that integrates into a shower, you can do gum massage while showering! I am interested in this haha I dislike the water mess when doing it over the sink.
I have a friend who quit smoking after 40 years. It may be all mental, but he joined a health club that had a wet sauna and would go 3 times a week to just sit in the steam and deeply inhale. He swears that it flushed out his lungs over time (coughing up stuff out of his lungs.) and greatly improved his breathing. Maybe a steam inhaler would also speed up the cleansing process. I'm jest sayin'.......
I have had dental issues with teeth breaking. I take good care of my teeth brushing, dental flossing and regular dental visits. I was thinking all my thyroid issues as that can give brittle bones. Doctors of course said no. I had a crown under a bridge severed off. No decay perfecting healthy. I had the root extracted and replacing with implants instead of another bridge. $$$ I guess since I am stuck home with Covid I am spending vacation and fun money on teeth instead. Ugh no fun.
Since I was diagnosed with CLL 8 years ago (in my mid-50s), i have lost 2 teeth and have 2 other loose ones now.
My hematologist doesn’t believe it’s connected to CLL (I am treatment naive). My dentist suspects it was 15 years on Fosomax, which was supposed to prevent osteoporosis (though I ended up with that too, lol).
when I was on FCR four years ago I got mouth ulcers and three teeth dropped out. Difficult to say for sure if the two were connected, but my health system was generally very low. I’ve since had implants.
thanks for your reply, there seems to be a few people with dental issues with this damn illness, but mostly anecdotal. I feel implants if possible or dentures to follow😞
Yes to the tooth thing - whether CLL, my BTKI (Ibrutinib) or who knows . My dental Xrays now show bone loss in my jaw; and I have now had several extractions as a result. Am currently sitting with one back molar which has partly snapped off while eating a bread roll. Have to wait just over a week with a painfully sharp edge of tooth before I can get it treated !😒
While on W&W I got more frequent gum infections even though I brushed and flossed and did everything right. I had deep cleaning and still a tooth died. I blame the CLL.
The infection that killed the tooth got into the roots because I burnt my gum on some hot food and it went from there. Since then I’ve been super careful and thankfully have suffered no more losses.
I’ve been through FCR now and though I got mouth ulcers, nothing developed into an infection
I am still W&W, I have lost 4 teeth since diagnosis 5 years ago. They haven't just fallen out, it has been toothache and extraction - often an infection under the tooth. I do my best with tooth care but am not great 
Thankfully none of the gaps are visible. My dentist did say that if a teeth gets a bit loose, food gets stuck underneath of around the sides of the roof and causes abscess or decay.
If this keeps happening, it might be worth getting an appointment at your local dental hospital, if you live near a city which has one.
Liz in UK
Liz sorry to hear your tooth loss was a painful one which I have seemed to of avoid so far. I also try my best to maintain the teeth I’ve got but unfortunately it seems lifestyle choices have taken their toll. Like you I’m in the UK but where I am there are no NHS dentists only private which are not affordable. As my loss and potential further losses aren’t that painful (thankfully) the emergency treatment at the hospital isn’t viable. The hospitals have enough to cope with without me going there about my teeth. Jon
I am VERY lucky to have an NHS dentist - we moved here near 35 years ago, when it was the norm to have NHS dentists and ours has stayed NHS. We live close to Manchester, and Manchester Dental Hospital is easily accessible. I have never been, but I know that people start queueing out there very early, hoping to be there before the queue is closed. I had a tooth removed a few months ago - it started to hurt on a bank holiday weekend as these things so often do, but I was able to see an emergency dentist. She said that it would need to come out, and because of my CLL it would need to be taken out at the Dental Hospital. However, when I told her that I had CLL she asked her assistant to get me seated on the chair etc. And I could see her googling CLL on her laptop. I went to my dentist on the Tuesday, and she said that with permission from my GP and my haematologist she would be happy to take it out in the surgery. So they all liaised on the phone and I had it removed the following day. No problems at all. And easier than traipsing into Manchester.
The state of NHS dentistry really bothers me. Our younger daughter still goes to the same dentist, although she no longer lives with us. And our older daughter has been paying for some years, but a new practice has opened on the new housing development she has moved to, and they have taken her as an NHS patient.
Liz in UK
Liz the NHS dental system is a lottery for sure and not a new one. I’m in Gloucestershire and when we moved here 24 years ago it was a similar situation. We had to travel 30 miles for NHS treatment in Tetbury for our son but that, like many others, became a private practice. I too feel concern for the younger generations going forward and that the great NHS will soon be unavailable to most.
Private insurance for those who can afford will be the norm and for those not so financially secure……..😞
My husband got family health insurance with his job and then 2 days before they took spouses off the insurance I was diagnosed with CLL. Thankfully, I was able to get to the Christie. There is no way we could afford private insurance for me with cancer - it was about £700 a month they wanted!
Liz in UK
Liz that was great, glad you could get the coverage with the PHI. I too have health insurance with my employment but guess what, I was diagnosed with CLL 1 month before the plan started. To be honest the treatment and monitoring I have received via the LINC and at the Edward Jenner Unit has been good I think. The only thing I have a gripe about is the lack of info and a reluctance it seems to giving you your full blood count results. Small thing really.
However I have never looked at my BUPA cover, maybe dental work is covered? Thanks Liz for you reply and hopefully, inadvertently giving me an option to get my teeth sorted👍 Jon
I started having crowns falling off, fillings fall out and break off the remainder of the tooth, this all happened about 6 months after being diagnosed(5 Years ago), I'm in the process of having Oral surgery of all remaining teeth and getting a full set of Dentures, I dread it, but I need to get it done
I also had dental issues after starting treatment (V & O) six months ago. Diagnosed with CLL in March 2019, started treatment in May 2022. Had very few if any dental issues in the last 12 years and in the space of the last few months needed two crowns due to cracked teeth, a root canal, and an infection in by gum area that needed antibiotics. I take are of my teeth and I'm not very old - so no real explanation for all these dental issues.
Not lost tooth yet, still on watch & weight😁.
As we are all more prone to infections , we are all at risk of gingivitis at a minimum.
Oral hygiene must be top notch.
Personally I find ultrasonic toothbrush essential (have a look online for SURI, environmental , recyclable brush heads. Satisfied customer only),
Find the toothpaste that you need, for sensitive, for tartre etc etc.
Waterpiks blast water or mouthwash between teeth & help. (Brushed my teeth after some toast then used water pick Amazed at crumbs that came out.
Flossing - yes you should although watch you don't snap floss between tight teeth & damage gums.
I prefer interdental plastic rubber covered sticks which are easier to get into your tricky teeth.
Spit toothpaste out don't rinse, no drinking or eating for 30 minutes,
Then mouthwash (Listerine etc) takes time but worth it.
I am not a physician, but I can provide some general information that may be helpful. It is important to consult with your physician or dentist to properly evaluate and diagnose your specific situation. Chronic lymphocytic leukemia itself is not usually associated with tooth loss as a direct side effect. However, some factors associated with CHL or its treatment may indirectly contribute to dental problems that can lead to tooth loss. So I would advise you to contact your primary care physician or dentist first. I usually always do so, it is better not to put off treatment for later, I immediately order services here vipdentalny.com/ , they are great specialists
Paxlovid or not?
Watch & Wait. How do you cope?
Travel insurance for UK residents with CLL
Dental Implants and CLL
Female Issues ?
