Osteonecrosis

The other medication I have been prescribed is Doxycycline and Pentoxifylline.

Hi. 
I know there are quite a few people here on the same regime. Hopefully somebody will pop on to help you. I do know of one or two on another group have had good results. 

Thank you Dani. Not the best news today but I did see a few people on the forum had been treat by Dr Patel. Just hoping the treatment will work. It is so painfull at the moment especially when I eat.

Joe. Have a look at this thread

https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/diagnosis-and-treatment/254881/osteoradionecrosis-orn-what-to-expect

Thanks Dani. Much appreciated.

Hi Joe, Dani has asked if I minding messaging you.

My partner was diagnosed with Osteoradionacrosis. I actually wanted him to be referred to Dr. Vinod Patel at Guys but unfortunately he couldn’t cope with travelling down to London.
(It was only by trawling through the McMillan Community Forum I became aware of Dr. Vinod Patel, and of the relatively new treatment that was proving to have excellent results).

I told my partner to insist that his Maxillofacial consultant prescribe him the PENTO medication. 
He’s responding very well to the treatment, much to his consultant’s surprise. (Who worrying, didn’t appear to be aware of this new treatment).

He has an appointment at Maxillofacial tomorrow so we’re hoping the improvement is found to be continuing .
I’m afraid I’m a bit fuzzy on the time-line between when he started the treatment and his first scan. I thought it was 6 months but it was possibly less. Either way, his consultant was apparently visibly shocked by degree of improvement.
I’m hoping his results give you something positive to hang on to and that you also experience the same.
From what I’ve read you’re definitely in the best hands if you’re under the care of Dr. Vinod Patel.

I can only imagine how awful it must be to have to go through this, as I’m fortunate enough to be only participating from the sidelines. I’m presuming you’ll have already been through enough as is it, without a diagnosis of Osteoradionacrosis on top of it. 

My partner was also initially prescribed antibiotics and he’s currently taking:

ALPHA TOCOPHERYL ACETATE  500mg/5ml oral suspension (Vitamin E) 10ml Once Daily

SODIUM CLODRONATE 800mg One Twice a Day, Monday to Friday Only

DOXYCYCLINE 100mg One a Day

PENTOXIFYLLINE 400mg One Twice a Day

Thank you so much. This is really helpful advice. This is a great community. I wish I would have used this resource sooner when I eas having my cancer treatment.