Hi
I've been offered Immunotherapy to start quite soon and also been put forward for trials
I'm uncertain about the trials and wondered if anyone has anything positive to report on or advice?
I'm 2 years post surgery for tonsil cancer - the cancer has now spread and I have a had a short course of RT with a view to starting immunotherapy
thanks in advance
Hi Steady. Immunotherapy is obtaining excellent results. There’s a few in here at minute having it hopefully someone will pop on. You can put immunotherapy in search bar and this will bring up some conversations. Did the trial have a name ? There’s a lady on a vaccine trial with scan cells. Where your cancer hospital ? they may be taking part in that one.
I know I would explore every option and grab anything that was offered.
good luck Hazel x
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hi Steady. What’s the trial called? Maybe can help with contacts when we know that
The Scancell trial is called Modi1 but there are quite a few others
For me, I would be very very keen to trial if I had a recurrence.
The elephant in the room, of course, is in randomised trials.
You’d have to find out how the trial is structured. I wouldn’t be happy not having the new drug which with randomisation would be down to computer choice.
For example with Modi one cohort get just the vaccine and the other get immunotherapy as well.
You really need some proper detailed info from your oncologist
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
HI
thank you both for your replies, it really is appreciated
yes it is a random trial. At Christies in Manchester
A combination therapy of EFTI & Pembrolizumab or Pembrolizumab only
Thanks for the update. At least you’ll be getting pembro whichever way you go. The other is an immune enhancer targeting white blood cells. It’s all complicated stuff. There are some clever people out there.
Me? I’d go for it.
Good luck and let us know how you get on.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Fingers x update when you can we’re here for you to rant rave or just chat.
Hugs Hazelxx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
thank you both
With a poor prognosis (all though I am feeling well at the moment) I'm wondering whether its worth just doing the Pembro and having the best quality of life I can
as side effects of the trials seem quite grim!
I'll let you know what I deceed
HI RR,
Did being HPV pos have any effect on how your cancer was treated? I wasnt told I was HPV at first post post surgery out patients. When you raised this in one of your replies I asked the nurse on my care team and she said I was positive but was never told - just finding that out now over 2 years later has been a blow as I feel I would have approached thing differently at the time of consultation and ongoing out patients appointments. I'm not impressed I was never told this.
Hi Being h p v positive means your tumour was caused by the human papilloma virus there’s many strains p16 and p18 the most common which causes HPV oral driven tumours. The treatment is the same chemo radiotherapy or just radiotherapy for both positive and negative. The main difference ys how the tumours respond to treatment with HPV driven ones usually responding extremity well with over 90% 5 year sucess rate. Sadly there’s always some. that don’t respond as well.
As for immunotherapy there’s some excellent results around. I csn direct you to a guy who is undergoing immunotherapy who also had tonsil cancer diagnosis in 2020 he’s running ultra marathons whist under treatment . Let me know if you want the link. He’s a professor so quite a technical blog.
Hazel x
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Did being HPV pos have any effect on how your cancer was treated?
Not at the moment. There are trials to reduce the amount of radiation we get because HPV driven oropharyngeal cancer responds very well to it. I had six weeks. I know somebody who had only 4. In time the four weeks may be the advised treatment.
Over 80% of OP cancer is caused by HPV and many patients here seem to have to ask. I think being HPV negative is more important and I thing people should definitely be told about that.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
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