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
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
PS Jenni. I’m a vet and can see pretty well that your jaw bone is almost in two pieces. I would be going straight to Guys and urgently.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hello, we've been told today that my husband most likely has ORN. There will be a scan to confirm but they mentioned pento. I'd be interested to hear experiences too
Sue
Do a search here on the forum. There are a few posts
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I have booked an appointment with my consultant this afternoon (Tuesday 18th April)
How did it go?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Dani,
My Consultant was dead against it. He said it was a treatment that could only ever be used for a short time and if in the future I had a toe infection I might need it.
I've never had much confidence in him. He was a junior when I first saw him, and he wanted to put me on a trial that the lead consultant wouldn't allow. My consultant behaved like a spoilt brat complaining that he wasn't allowed to treat cancer patients. The previous lead has now left and the junior has been promoted. He doesn't listen to me, has never been able to feel the loss of bone in my jaw, and now says that the break has healed because I can open and shut my jaw. I feel like I'm being passed over for effective treatment.
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?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
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