I hope you are keeping safe and well?
I have Waldenstroms Macroglobuleamia and post chemo treatment of 3.5 years.
I’ve recently had a dental check up to find I have the onset of periodontal disease. It’s been mentioned this can be triggered by having lymphoma and following chemotherapy treatment. Has anyone else heard of this or suffered with it? I am to have hygienist appointments - the first is a deep and through gum clean followed by a through tooth clean and polish. The first apparently is quite uncomfortable so may need local anaesthetic. I’m quite concerned whether it’s ok for me to have this treatment so am thinking of contacting my consultant for further advise. Any suggestions or knowledge of this would be most grateful xx
Hi @sajdee great to hear from you and I am so sorry you are having such horrible dental problems.
It is not quite the same, but I was diagnosed with CLL and put on watch and wait, I had frequent teeth infections and antibiotics over the next 3 yrs.
My dentist referred me to a specialist dentist and I ended up having about 8 teeth out and dentures fitted. Not implants as they were said to be invasive and could cause infections.
The procedure was coordinated by me with my consultant, doctor and dentist and involved a course of antibiotics before, during and after. That was 15 yrs ago and I haven’t had a tooth infection since and providing I have good dental hygiene I am exempt from going to the hygienist. The extractions were done under local anaesthetic, which worked well and the dentist was covered in blood when he had finished, I think he had his foot on my chest for leverage at one point but that just might have been my imagination !!!
It’s interesting when I went back to work my lower face was black and blue and I got so much sympathy, far more than for my CLL that nobody can see.
Hello @sajdee hope you’re doing okay. We would really encourage you to get in touch with your consultant about this, as they would be best placed to offer you advice and might be able to also liaise with your dentist to talk this through with them. Don’t be afraid to contact your consultant about this as it’s really important you get the right advice for your individual circumstances.
We’re only at the end of the phone if you want to talk things through further.
Have MM. In remission 15 months. Need dental work. Either extraction or root canal. Have regular Zometa infusions. Can I have this done safely?
Morning @Olliet and welcome to the forum. It’s good to have you here. Unfortunately, I can’t help you with your medical questions - this is definitely one for your medical team or your dentist. Have you managed to discuss this with either of them?
It might be worth giving the support line ( Blood cancer information and support by phone and email | Blood Cancer UK ) a call and talking things through?
It’s frustrating, all the things you have to consider following treatment isn’t it!
How are things for you at the moment?
Hi @Olliet I am so glad that you have found us and you can see @sajdee’s post above and my response.
I realise it is not quite the question you are asking but perhaps what comes out of it is it is worth perhaps discussing this issue with a member of your treatment team. Also I think this might be a good way forward is because we are all individual with our own medical histories.
I hope you will find this forum supportive and @Nichola75 has also given you the support line details if you would like to talk to someone.
Take care and I find dental work so painful.
Please let us know how you get on and I hope other’s can share their experiences with you.
As a retired Dentist, under these conditions I would have given antibiotic cover before perio treatment. BTW I have CLL myself!
Hi @rmtma a great big welcome to our forum and you certainly qualify to answer these posts !!!
I hope you will find our forum interesting, informative and supportive, I do.
I would be interested in hearing more about you and how you are
When working (now retired dentist), I always gave antibiotic cover to those with blood dyscrasias. Particularly if you are having periodontal work. (PS I now have CLL)
That’s really useful information. I hope you are well?
Hi @Olliet, it’s great to hear your 15 months into remission. We would recommend you speak to your treatment team to find out whether it’s safe to have extraction or root canal as they would be able to give a personalised reply based on your medical and treatment history.
If we can be of any further support, our Support Services Team are always here: https://bloodcancer.org.uk/support-for-you/talk-blood-cancer.
Hi @rmtma welcome to the forum, sorry you have CLL, I have too.
One of the things drilled into me (no pun intended) before I started treatment was to maintain good oral health and to not brush too hard, to reduce gum bleeds (not that mine do). There is a lot of bacteria in the mouth and the risk of infection is quite high. Using mouthwash was also encouraged.
Hi @Olliet im sorry you have to have dental.work I’ve just been through that and had to be referred to have a tooth out. Before I could do anything I had to speak to the haematologist. The hygienist wanted to check what medication I was on before she agreed to see me… I guess if my meds change then we’d need to look at things again but for now I’m ok to carry on there… Good lick with your treatment I hope it goes OK.
Hi @Olliet. Did you have your dental treatment. Was just wondering how it went?
I’ve not been on here for a while and I tend to check in once I have notification emails.
Since I’ve joined this forum I’ve noticed there aren’t many of us who have WM. How are you doing with your remission? Hoping you are feeling ok? How often do you have your check ups? I’m 3.5 years post chemotherapy with 4-6 monthly checkups with bloods and review with my consultant. I’ve been feeling absolutely fine with no infections whatsoever so far especially through lockdown and shielding I didnt even have an inkling of a cold etc which is a real positive throughout a very trying time.
Hoping you are well and look forward to catching up soon.
It’s great that you picked up on this post. Always great when somebody with similar/same diagnosis can share their experiences. Sounds like you are doing well?
Yes I seem to be doing well thank goodness. I have a checkup and bloods in a few weeks which is always an anxious time and the same for all of us I’m sure.
After being furloughed and then redundant during lockdown I am starting a new job from 23/8. I’m keen to get back to work but also quite anxious at being ‘back out there’ after shielding for so long!!
Yep - waiting for results is always horrible, we all understand that!
Wow, furloughed, redundant and new job - that’s a lot packed into lockdown! Exciting to have something new to look forward to but quite nerve wracking as well I can imagine! What is it you do?
Hi @sajdee, gosh starting a new job on the 13/8, scary but exciting perhaps.
Yes, we have been shielding for so long, so do you feel it will be a safe environment for you?
It is OK for you to say your needs.
Please let us know how it goes.
Take it steady and look after yourself
As well as furloughed & redundancy I lost my brother just before the first lockdown so it’s been a real rollercoaster of emotions throughout. We have recently said to goodbye to our eldest son who flew out to America to study for a year or so. I’m not too sure if my poor heart and mind can take anymore drama!!! I think going back to work will be a good distraction. I will be working for a local car dealership, a week of training then I will be doing my contractual two days a week which will be nice as I get 3 days a week to do my own thing! And it won’t be affected by hospital visits etc. Wish me luck!!!