Hi Thank you for letting on to your forum.
My brief history
I was diagnosed with CML in 2015. I have been on imantinib since then and have been in remission for 5 yrs. that is great but the imantinib really upset my tummy and I have years of chronic diarrhoea it got to the stage I couldn’t leave the house With fear of having an attack which did happen once ! I have requested a change of medication and am at the moment on a break from medication , so far so good my stomach problem cleared with in days!!
My question is tho I have had dental problems for a few years and I’m at the stage that my teeth are loose and I’m likely to loose them , I’m absolutely devastated my smile was the best thing about me. I have read articles about dental problems and imantinib ( this includes bones too) there are no official trials or research into this but I have read there is a link. Has anyone here had a similar problems ? I hope I’m not alone in this.
Hi @Susiesu and welcome to the group. I’m glad you found us! I don’t have CML but know many of our members do so I’m hoping they will be able to share their experiences with you.
However, I understand how I’m awful something like that it. I had radiotherapy and had to have a few teeth removed and a few are now loose. It really upsets me to. Have you spoken to your dentist? I just wondered if there was anything they could do? X
Hi @Susiesu a great big welcome to our forum.
I have CLL and I have never been on treatment but I suffered from dental infections and I had to have multiple extractions in 2006 and now have top and bottom dentures. The best thing I ever did, but it is not the same as having my own teeth in good working order and they took me a long, long while to get used to. My GP, consultant and dentist worked together and I had antibiotics before during and after the procedure.
I look forward to hearing more from you.
Thank you I’m so glad I have found you ! I don’t know how I missed this forum , I’m always trying to research and find others experiences. I can’t tell how much better you have made feel
Yes I saw my dentist Friday they said there is no treatment, the only thing they/I can do is Make sure I clean my teeth and floss everyday! I was quite shocked when they said they couldn’t do anything I didn’t question them but I wish I had asked how long I might keep my teeth. I am booked in with hygienist for a deep clean !! But thats not till May , so I guess they are expecting I will still have teeth then😅
Hi @Susiesu and @Nichola75, I was due my annual check up last July and I did not feel safe going so I cancelled the appointment and later that day lost half a front tooth eating a piece of brie.
I have even less that half a tooth left now and I get the odd twinge occasionally. The thing that worries me is that when I eventually do go to the dentist and probably have to have it out there will not be enough tooth for the dentist to get hold of with his ‘pliers’!!
Anyone else out there with dental issues?