Immunotherapy and clinical trials

Hi Nige, this is AHEAD-MERIT? 
There are folk here in clinical trials so hopefully somebody will pop on. 
How are you feeling? Folk have been asking after you. 
If you do go on the trial fingers crossed you get both. 

Hello Dani, really good to be in touch with you again - it’s been a really tough time over the last couple of months - from the positive of being refered to Royal Marsden , to going through multiple tests and scans and biopsies, to meeting after meeting that it’s no go and then moved on .

Time has moved on and now we’re at the hope of immunotherapy and maybe a possibility of a clinical trial.

Maybe I had hoped for a little too much to happen - each knock back hits home hard.

In between about 6 weeks ago, I had a rig feeding tube fitted in my stomach - experienced the most incredible pain when the dressing being removed after the op, it was stuck down like aroldite to my chest hair - just being ripped off - I kid you not, , lucky my wife was there to stop the nurse, who eventually used scissors to help cut through.

Hence , not the best last couple of months.

Now this coming week I’m up to the Royal Marsden Sutton to see about the clini cal trial.

Nige

Hello Nige, 

My partner has metastatic head and neck cancer in his rib, hip and his spine. He was put forward by our local hospital for this new trial and has been going to Guys Hospital in London for various tests over the last month. He was about to start tomorrow but they were waiting for the go ahead from the sponsor (Biontech) in USA to agree that he was eligible although Guys deemed him eligible for this trial. Unfortunately he's found out today that he's not eligible as his tumours are not large enough. A blow for us as even if he actually didn't get the vaccine (it's 50/50 as to pembro + vaccine or just pembro) but just the pembro he would have been monitored more closely on the trial and he would be helping cancer research. Sending you good luck for getting onto the trial and hope it all works out for you. Would be interesting to hear how you get on so do keep the forum updated. Best wishes. 

Hello - thanks for getting in touch - sorry to hear your news, I go for consultation and tests this Friday - I have the concerns that for you is reality, not being accepted onto the study - time will tell- sending you best wishes, strength and courage.

Could I please ask - did you find making the decision to opt for the trial, a difficult one ?

regards

Hi there,

No my partner had no concerns about being put forward for the trial, he felt that if he did get given the vaccine then it may give him more time and slow his bone cancer down (although at the moment its fairly slow growing which is a relief) plus in either scenario with or without vaccine, being on the trial is helping research into cancer treatment for head and neck cancer that has either returned or metasised as in my partners case. Yes it's a big commitment to go on the trial but if it helps him or others then that had to be a good thing. They monitor you very closely and there's lots of checks to do before being accepted. Wishing you luck with your tests etc. 

Thanks - will be posting information.

Legin13 said:

Hence , not the best last couple of months.

That’s pants. How do you hold it together? At least things seem to be moving in the right direction and even if you are allocated out of the vaccine cohort you will get the pembro 

I recall one of our members here pulled out of his trial when he discovered he was in a placebo group. You can’t blame him really, 

Im keeping my fingers crossed for you. It’s been good to hear from you. Lots of us were worried xxx hugs. 

Hi Dani, as I said, it’s being a really tough few months - between us, my wife Ellise and me, we’ve shed a few tears- I can’t say I’m holding it together that well, scared stiff as to what the outcome each time might be.

This Friday I go for tests, assessments and consultation etc, up at Sutton hospital for most of the day - the results will be sent off to firstly see if I’m accepted onto the trial, but after that if I am, it’s 50-50 as to whether I get the trial drug, toss of a coin.

I can’t get myself up for being accepted onto the trial / having the drug, as I’ve just had set back after set back - I can just hope that for once something might go in my favour.

As you say, hopefully I’ll have the Pembro,  , I’ll be grateful for that.

I haven’t been on the site, hot a few lows and I’m not one to bring others down, enough on their plates.

I hope all’s good with you.

Nige

God Nige It sounds like you are going through a very challenging time. The uncertainty surrounding your upcoming tests and the trial can understandably create a lot of anxiety. It’s completely normal to feel scared, especially after facing setbacks.

Your feelings are valid, and it's okay to take a step back and acknowledge how difficult this is. Wishing you the best as you approach your appointment and hoping for a positive outcome regarding trial and treatment. Keep us updated please.