Scaumous cell carcinoma hpv 16 left tonsil and both lymph nodes. In 2022 had 33 proton therapy 70 grays and 2 x cisplatin.

Hi Shaun. Sorry to hear what’s happened. I certainly remember your earlier days here. 
Before you do anything else ask… no insist… for a referral to Mr Vinod Patel at Guys

Heres a link 

https://www.guysandstthomas.nhs.uk/our-consultants/vinod-patel

He is the expert in ORN

Let us know how you get on  

Hi Danni . I did email about 3 months ago or so but got not reply. I am anxious it will delay any surgery. I know you've mentioned vinod before but given that I have pathological fracture and a large area of necrotic bone damage am I too far for PENTO ? 

Hi Shaun I’m so sorry to read re your oestoradiodencrosis please try and contact via the link Danis given you I’m unsure why they didn’t reply but it’s worth a try. Dont know re the Pento thunks that an answer only the surgeon can give you. 

Let us know how you  get on is it Michael Hio you're seeing seeing at Leed s?

Hazel 

Thanks Hazal, yes it's Mr HO.have you any knowledge about him that could be helpful ? Cheers.

1. Hi Dani, apologies after reading my  message I know you can't give treatment advice. Blame it on my anxiety and pain meds. I have just emailed the helpful link to guys you gave me asking about how to make a referral. Cheers.

Shaun22 said:

I know you've mentioned vinod before but given that I have pathological fracture and a large area of necrotic bone damage am I too far for PENTO ? 

I know but this guy is a surgeon.

There is always Vin Paleri (of "Super Surgeons" fame) of the Marsden too. What this man can do with a broken head is unbelievable. He might take you on. Again worth a try.

Shaun22 said:

emailed the helpful link to guys you gave me asking about how to make a referral.

Try phoning his secretary too

Hi Shaun. I don’t know him Personally but he’s got a good reputation amongst the other oncologists at Leeds and in the head and neck world in general.

he’s done a lot of work on free flaps.

Hazel xx 

Shaun22 said:

Unfortunately I have developed osteoradionecrosis with pathological fracture of the left mandible.

Bloody hell Shaun. I've just remembered this thread https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/updates/270698/shaun22-update-on-biopsy-of-jaw

Thanks Dani. I did mention about vinod patel and guys hosp numerous times to my macmillan nurse but she mentions she knows nothing about vinod patel or indeed the process of any referrals so this appears to go nowhere. Is this chap private health care or is it NHS funding needed ? Like you say I could always try and telephone and see if I can persue things myself as this seems the only way to look into this.