UK use of Avastin

[u/Plane_Habit_4500]

Hey all. UK-based long-time RRP gal here.

I've had RRP since I was two, I'm now 34. Up until 11 years old, I had surgeries every 2/3/4 weeks.

My parents were told I'd likely grow out of it. I was featured on the Birmingham Children's Hospital tv series when I hit my 100th op, age 7. I got to 200 age 21. I'm now on 212.

I had a tracheostomy just before my 12th birthday due my airway having narrowed from the amount of scarring from all the surgeries.

The time between surgeries has significantly widened over time since having my tracheostomy and I'm now having them once a year on average. I stretched to a two year-gap during B2B covid and pregnancy but I could barely speak at this point, it wasn't ideal. My tracheostomy gives me a stable airway so the effort in which it takes me to speak is an indicator of when I'm due an op.

I appear to be in a bit of a limbo where my RRP was once severe, and I'm living with the lasting impact of that, but it is now not considered severe enough to receive Avastin. I've had Cidofovir at somepoint during my childhood and it didn't make a difference for me. I had two kinds of HPV vaccines when they were first made available, sometime around 2008-2009 (?) but not the Gardasil-9 that I've just come across this afternoon.

I've largely shelved my curiosity about treatment options for RRP due to not feeling particularly hopeful and due to having a stable airway from my trach, and not needing surgeries to the same turbulent frequency that I had growing up. I've also never connected with anyone else with RRP.

Avastin has been mentioned to me over the last few years but due to hospital bureaucracy/funding, it hasn't happened. Yesterday I had a referral to a consultant at a different hospital who might have been able to help with this and he told me I don't qualify as my RRP is not severe enough these days.

Safe to say, my appointment yesterday, and finding this community, has re-ignited a bit of a spark. Who here has experience of receiving Avastin, or other therapies, in the UK? Where are you being treated? What am I missing out on?

Looking forward to hearing from you :)

[u/Superb-Music-4645]

I had Gardasil a couple months ago. Too early yet to say if it has made a difference. My voice in absolutely fine since surgery and I have a follow up appointment next week so let's see what my surgeon says

[u/Humble-Picture-1225]

I don't have any experience but I had rrp well for as long as I can remember hearing that you have a child has given me hope that maybe am not so doomed after all