Immunotherapy - Cancer vaccine trial

Thank you for posting this update. It does sound very encouraging. 
All the best for the rest of your treatment.

-John

Hi Yes all good we’re over in Spain riding my bike and chilling. Back  ti U.K. mid November brrrrrr xxx keep us informed please xc

Thanks John xx

Sounds lovely, enjoy  xx

I posted on here earlier about my dad. Immunotherapy seems to have stopped working, so they were looking at trying chemo. Anyway, I then saw this post, investigated and managed to speak to Dr Miller about my dads suitability for the trial and so far he appears to be a suitable candidate. He is luckily based in Nottingham where they are recruiting, has squamous head and neck cancer which is one of the types for the trial, and his immunotherapy is Pembrolizumab which they are trialling modi 1 with in cohort 3. Quite a lucky set of circumstances! Meeting with his consultant on 15th november so going to ask them to refer my dad to the trial. Fingers crossed. 

Oh this is amazing   I will keep everything crossed that he is accepted on the trial that would be amazing. I am having my treatment in Liverpool but I know Nottingham is one of the other main centres.

I am in cohort 2,  I too have squamous cell head and neck cancer, I was on pembro for 6 months before being accepted on to the trial. The side effects are quite mild and so far the results have been incredible ... I have to keep pinching myself.

Please keep in touch and keep us informed. Lots of luck to your Dad. Hoping and praying for him

Trish xx

Hi Tilly

Your posts and this forum really bring the cancer journey for various people to the fore. No doubt a whole host of people here and elsewhere are willing your current treatment to be a success for you. I hope your general well-being improves further (hearing and ability to swallow) and that the tumour continues to shrink and hopefully disappear completely. 

An event like that would no doubt give cancer sufferers everywhere hope that the battle against cancer is starting to turn in their favour.

Everything is crossed for you.

Strange day yesterday. Met with my dads consultant who only wanted to talk about chemo. I asked about the trial and he told me its only for breast and renal cancer. That contradicted what I had been told by the trial people so I emailed them to confirm during the meeting. They confirmed its the renal/breast department running the trial but its open for all 4 cancer types (including my dads). I showed the email to the consultant and he didn't seem at all impressed/interested, saying he would happily refer if someone else was managing it. I got the feeling it may generate him more work if my dad gets on the trial, maybe i'm wrong. Anyway the guy I had been dealing with at the trial is now making contact with the various teams to work out how they can assess my dads suitability. He also said he had previously trained my dads consultant team on referrals to the trial so i'm very confused as to why my dads consultant seems so reticent to investigate and try and get him on. I will however keep pushing for it to at least see if its an option before going down the chemo route (as I know once that starts he will no longer be eligible for any clinical trials. I will keep you updated

Thank you so much for your message, yes it is great to be able to share news about new treatment options with other people in similar positions and this is a great place to do it.

I'm just sitting here having my 4th vaccine,, my hearing has completely been restored which is just amazing and fills me with hope that things are going in the right direction.

I feel incredibly lucky to be on this trial and hope it gives many people hope that there are always avenues to explore to tackle this awful disease.

Thanks for your encouragement it's much appreciated. I'll keep you updated.

Trish  

That's really disappointing to hear, I can't imagine why his consultant is being so unhelpful but its really good that your Dad has you to fight in for him. Don't give up until every avenue has been explored.

The trial is being coordinated by the Scancell team in Nottingham, am I right in thinking that's where your Dad is based ? 

If I can be of any help at all please let me know. My consultant is Professor Ottenmeiner based here at the Clatterbridge Cancer Centre in Liverpool. He is one of the leading clinicians for this trial. Maybe he could advise you if you run out of options. 

I really hope that you are successful with getting your Dad onto the trial before they put him onto chemo.

Please keep in touch, I'm sending you both lots of positive thoughts and keeping everything crossed for you xxx