I am JAK2+ with Essential thrombocythemia (ET). Been on Hydroxycarbamide for 5 years. Having problems with my teeth falling out/getting loose. Still get mouth ulcers every few weeks. Are we allowed dental treatment via our local hospital or do I just have to pay as my last 2 extractions cost over £150 each? Just wondering if there’s any way around this as I’ve just lost another tooth which fortunately fell out on its own, but have 3 more that won’t be long! I will probably need a denture and it frightens the life out of me.
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Gosh @Michelle that does sound frightening.
This is a very good question.
Have you got a specialist nurse, consultant or GP you might ask firstly. then perhaps a Macmillan, Maggies or equivalent you might ask.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses for you as well.
Perhaps it might depend on your NHS services in your area as well.
So more questions than answers.
Just a side issue a few years after my diagnosis I had to have extensive dental work and extractions done mostly due to repeated infections.
NHS dentists would not touch me.
I was referred to a Harley Street dentist who quoted the cost of a luxury car. I came out in shock working out cost per tooth, cost per life expectancy etc.
Luckily I was referred to a private dentist locally and he worked with my consultant and GP and I had antibiotics before, during and after the extractions.
I hope others can share their experiences as well.
Please do let us know how you get on
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Dear @Michelle
I am so sorry to hear that you are having such issues with your teeth, it must be awful for you. As @Erica mentioned, many dentists will be reluctant to undertake invasive work when a patient is on chemotherapy due to bleeding and infection risk. I would strongly recommend speaking to your Clinical Nurse Specialist or Haematologist. There may be dental services within your hospital that you can be referred to or at the very least, the Haematology team can ensure your blood counts are safe to undergo dental treatment and provide written guidance to support this.
Hydroxycarbamide can lead to a painful mouth and it is worth speaking to your Haematology team around this too:
Mouth sores and ulcers can be painful. It helps to keep your mouth and teeth clean, drink plenty of fluids and avoid acidic foods such as lemons. Chewing gum can help to keep the mouth moist. Tell your doctor or nurse if you have ulcers.
If you do need any further support or information please do get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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