anyone had Durvalumab?

 Roseberry topping is a member here who was on the same trial. I’ve tagged him as he is willing to help. Hopefully you’ll get a reply soon 

Thanks Dani c

Hi Debbielouise

Debbielouise said:

 Durvalumab

I was on the Compare Trial and had the Durvalumab infusion for 6 months after treatment was finished.

My experience was OK - I was told/and read about all side effects possible but I came through  that bit of the treatment OK.   It was/is my understanding I could have been part of the group that didn't get the Immunotherapy - so they can compare the effects.  My side effects from being on it were minimal. 

I am a pretty big wimp when it comes to this stuff - but I wouldn't hesitate to say that the Trial team researches were excellent - they were another source of help and information whenever I needed it.  All the medical team/s that looked after me (there was lots)  knew I was on the trial and because of this seemed to us to take that extra time to make sure everything fitted with the Trial protocol. 

I have just been into James Cook hospital today for my review and also met the trial reserchers.  I don't need to meet them now for another 12 months as I am 2 years post treatment.

Its probably about 30 months ish since I started this journey and since I have been on the forum - Sue my wife has been on a bit - I am not great at dealing with illness/hospitals etc but I did it - so anyone can.  If you have any questions I can help please just ask and I will reply as soon as I can

Best of luck whatever decision you make.

thank you can ask what cancer you had ?any top tips to get through the bext few months I have ahead

just waiting for my swollen face to go down before i csn have mask fitting then 7 weeks radio and two chrmo plus PEG fitting not looking forward to any of it !

Hi Debbielouise

My cancer was called ELFS apparently - Evil Little F .....s Thats what I was told which I thought was quite apt.

So - HPV virus - sore throat - then struggling to swallow certain foods. Late/mis diagnosis. 

I don't think I am the best person to give tips   - Hazel  & Dani  are really the best at that - Beesuit and radioactiv??

They were a massive part of keeping me and my wife Sue on track.  But I will have a go ?

PEG - best choice  - Little bit of discomfort initially after it was in - but  it just made things so much easier - I should have used it earlier just to get confident with it and increase my weight  - I didn't take H & D 's advice to do so - Thought I would be able to eat - Silly me. If I know then what I know now.

Mask fitting - no problem really - again Hazel & Dani talked me through it and offered tips -  I  worked with a really good hypnotherapist who helped me prepare for this and the treatment - for me it worked - not everybodys cup of tea - but I used everything I could to help us both get prepared and get trhough it.  Acupuncture aswell through the Trinity Centre in James Cook hospital.   I also had help from Distric nurse when at home with the PEG once a week to check everything OK

We had 3 whiteboards for all the medication - fortisips -etc  and I had a trachy that needed cleaning very 5 mins Thats what it felt like anyway) We were both very strict on our timetable  for everything we did - I had to go in to hospital a few times and these came with me - recorded all water going in PEG -medication  etc and it helped as ward staff are so busy you need to look after your own stuff if you can - they sometimes even used my records for fluid intake -You can't be too organised.  Treat it as a job of work - you have tasks that you have to do. Ask questions - ask again -we aren't experts and mostly haven't a clue what they are saying never mind understand it. 

One day at a time -was some great advice -  we did it - massive team around you and little goals each 24 hours.  Get through a week - keep going.I am back hill walking, mountain biking, started Stand Up Paddleboarding - OK  there are some negatives but in the round  we  got through some extreme treatment.  We planned for the worst and hoped for the best. and tried to keep a sense of humour -

Very best of luck

Steve

Steve that’s a remarkable post. Thank you so much

Wow Steve Tahnk you …. I dont know where to start … Hazel and Dani are really amazing … texting and keeping me sane !

Im feeling my throat becoming more resticted each day ( very worrying) Face looks like just did 10 rounds with Tyson Fury! so no chance for mask fitting yet … going Monday to sign up for Druvalatab ( 50/50chance) My husband hasnt got a clue whats coming and Im trying not to think about my life becoming any more scarey or crazy than it is at the moment …. but I know it will.

Great tips for getting a whiteboard for treatment ive just bought a calendar to count of the days!do I need 3?

When did uou have trache? Im hoping I dont have to have one … Im def going to have PEG as soon as I can to try and stabilise weight asap is it strange not eating or drinking ? I cant imagine it .

Thank you for coming on here to answer my email I really appreciate it x

So happy to hear you are good and enjoying life 

Hi DebbieLousie

No You don't need 3 calendars!  ( . Keep that up though.

So the Trachy - now that was an unwanted suprise - not planned atall - but I had a bleed well before treatment had started - they struggled to stop it- so they asked me whilst in there if I would mind if they stuck this tank turret in my neck - just in case I might need in the future - silly me said go on then - and whilst you are in there take them 4  teeth out you are keen to get your hands on. Turns out I didn't need the trachy afterall but they seem to take every precaution and that is what the trachy was there for - just insurance.

Don't worry about the trachy - it was just my Elfs throwing a tantrum -

PEG - now thats a different story - I thnked it many times when I could just top up my tank when needed and could relax not having to fight with food going down. 

Very best of luck

Steve