Hi,
I had TONSIL Cancer when I was 45 treated by Tonsilectomy, radiotherapy and concurrent Chemotherapy with high dose Cisplatin. Probably HPV 16/18 relate, as I'm here 18 years later, when the recovery rate when I was first diagnosec was grim. It's a lot better now, because those of us who contracted the disease this way are surviving.
A few years ago I had a tooth extraction, not done at the hospital as I've long been discharged, and I didn't realise that it should be done that way. My private dentist didn't refer me even though I had informed them repeatedly that I had had head and neck cancer. Unsurprisingly the socket didn't heal. Whilst I was in America I was eating some very hard pretzel snacks and a piece got jammed in the socket. As I bit down I hgeard a loud crack. I knew instantly that my jaw had cracked. I was due to board a plane home in a few hours and by the time I landed in the UK I was in agony. I travelled to my sisters house and she immediately whisked me off to see her dentist. He took an x-ray but could not see a fracture. I came home and went to my own dentist, and my doctor, but although my jaw was very swollen and painful nobody could identify the problem. Eventually I managed to get referred to a consultant and was diagnosed with osteoradionecrosis and osteomyelitis given treatment with Clindamycin, with my GP prescribing Tramadol and Pregablin for the pain. After months of osteomyelitis the fissure opened in my jaw and was visible on an X-Ray. My NEW dentist thinks there may still be a small circle of bone surrounding the nerve which luckily is still intact. The rest of the bone to the mouth and chin is missing where I had the tooth out. The socket sppeared to have healed in a weird way, but at least there did not appear to be any bone still exposed. However a couple of weeks ago the starburst opened and a couple of hard pieces of material came out. I don't know if these were food debris or bone. I am worried that as the trismus slowly eases and I am able to chew more I may be eroding the bone I have left.
I have booked an appointment with my consultant this afternoon (Tuesday 18th April) and I would like to see if I can try the PENTO treatment. Does anyone have any advice what documents I should take with me to encourage my consultant to try this new treatment. I have the daily mail article on my phone, but can't print it out.
Any advice gratefully received.
Jenni
There’s masses on the internet. https://ksascholar.dri.sa/en/publications/pentoxifylline-and-tocopherol-vitamin-e-withwithout-clodronate-fo
I’m sure your consultant will be in agreement. It’s now a well known and effective treatment in a lot of cases.
If he isn’t cooperating ask for a referral to Vinod Patel at Guys who has pioneered the treatment in the U.K.
Best of luck
I have booked an appointment with my consultant this afternoon (Tuesday 18th April)
How did it go?
PS
Clinical trials leading up to creating a protocol for treatment had patients on between 6 and 24 months of treatment so what does he consider a short time?
