Post 18 months treatment chemoradiotherapy

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Good afternoon. Well after a second jaw swelling after infected tooth extraction I have been told today I have osteoradionecrosis and that unfortunately it will be difficult to manage. I have had a scan today and previously a biopsy.  Jaw very swollen and sore and prescribed doxycycline 100mg daily for a month. I have a follow up at Leeds dental in a months time and will likley know the staging. My question is should I be pushing for pento treatment.  I have been told that they don't offer it at Leeds. Also any advice on managing pain tips for managing this condition would be helpful thank you people. 

  • Hi Shaun sorry to hear your news bugger ! Not sure about Leeds not offering pentco have you asked at Leeds dental ? Or at bexley ? I kniw this trial was recruiting patients 

     https://raptorstudy.org.uk

    maybe worth contacting them. 
    hugs Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • I know it's a bugger. New challenges ahead. If it's a no no from Leeds I will enquire about the trial. Thought I had got away with osteoradionecrosis due to having proton therapy but hey ho I will have to get on with things. Surgeon said avoid any risky sports that could cause damage to the jaw. Told him I was a cyclist and no way I would give this up , it's in my blood. Peurto polencia in June 5 days hope your still spinning the pedals.

  • Hi Shaun Yes we’re over in Murcia as I type. The suns shining did 60 km yesterday Easter was a bit too windy ti geg out. You take care we don’t want any Geraint Thomas moments coming over handle bars  inti trees !!!! Everything x for you am disbelieving that Leeds aren’t offering pentco did you see Jaymit Patel ?
    A sunny photo from yesterday biking along canal  

    hugs h


      

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • That's fabulous and well done 60km . Yes I had previously mentioned it to him and he said it's not routinely prescribed but he could ask. I will be seeing him in 4 weeks time and will require. More miles equals more smiles. Thanks Hazel.

  • My question is should I be pushing for pento treatment

    Yes. You don’t have to enter a trial. It’s a proven treatment. Give Guys a ring and get a referral. They might not even need to see you. It’s a long treatment. Two years but worth it 

    www.guysandstthomas.nhs.uk/.../vinod-patel

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi Shaun defo smiles. Do has Dani says get jn touch via the link.

    hugs H xx 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Dani thanks for this. I will see what leeds say and persistently ask about pento treatment and will look at guys if no luck with leeds. Seems daft if pento treatment has a robust evidence base it should be a viable option everywhere.

  • Thanks Hazel I will get in touch with guys after I know what stage the osteoradionecrosis is in 4 weeks and if leeds don't offer pento.  Cheers.

  • Hi Shaun, sorry to hear you are having all this trouble. Did the tooth extraction cause the osteoradionecrosis, or was it going to happen anyway?

    Regards Ray

  • Hi Ray. I had a really bad infected tooth and it was causing lots of issues so after a joint meeting with leeds dental hospital and oncology they decided an extraction was required. This was done in January and I  think this possibly progressed from then. Unless it was doing its work before as I always had issues pain and numbness with that particular tooth after treatment.