Immunotherapy

Hi welcome to the club none if us wanted to join. I am 3,5 years post radiotherapy for tonsil cancer with several affected lymph nodes. I had 35 radiotherapy and 2 chemo sessions. There was no places left on the trials when I was diagnosed personally I would have jumped a5 the opportunity immunotherapy is the way forward lI do know a few that have been in the compare trial will see if I can get ine if them to pop on and answer yiur question tomorrow.

Did you get the name of the trial ?

As for side effects remember we don’t all get the same side effects m when I signed the consent form the list was very long  for chemo radiation but they have to tell you everything  that may happen.

Maybe give your cancer nurse a call to,clarify anything that’s concerning yiu they are an excellent source of information.

Hazel 

Thank you for the reply 

it’s called the compare trial atleast I assume that’s the name  atleast on the paper work they have given me till next week when the nurse will phone me for a answer honestly don’t want to do the wrong thing the standard treatment put me off but obviously not having it is no choice. 

I have no symptoms of the tumor at the base of my throat only a large lump on the left side of the neck from the lymph node there saying the treatment alone will deal with that so no surgery at this stage but obviously I will be having constant check ups on progress.

think my worry is I put off going to the doctors since September last year due to my doctors struggling with appointments so I left it till after Christmas. 

Hi Abrasive There are a few people here on the CompARE trial. There are two random selected groups for intermediate and high risk tumours.  There is a chance you won’t get immunotherapy if you join. That aside it’s quite possible that in the future us patients will be offered immunotherapy as a first line treatment along with chemoradiation as the results seem to be quite promising. If I had been offered it I would have taken up the offer. It’s something you need to clarify with your oncologist. I think if they are offering it there must be a reason. 
I have a friend who is some months out of this treatment and did very well indeed with few side effects 

Hope this helps 

Hi I had  no symptoms either just Larry the lump in my collarbone  hollow. I was floored at the diagnosis I thought Bo had pulled a muscle  first found my lump on holiday in March wasn’t  home until May treatment started mid July So don’t  worry about the time scale treatments pretty brutal but if I can do it at 61  anyone  can. My blogs below with links to others it may help you. As for the trial the choice is yours maybe ring your nurse before for a chat.Imtoo know the person Daanimis talking about he had very little side effects with the immunotherapy of course we are all different. 
Hazel

Hi I’m being offered immunotherapy as the chemo/radiotherapy shrank my tumour but didn’t totally get rid. So starting the immunotherapy in September. I was taken a back that there’s some cancer left as my swallowing and overall health has massively improved. I’m running and all sorts! So they’ve suggested I can wait a while. I worried about leaving it as I ended my last treatment plan back in March but they’ve said it’s not spread. It’s left the lymph node in my neck but it’s still very swollen from radiotherapy and it’s up and down loads. Doc assured me it’s not cancerous. Anymore but I’m still worried. Do the lymph nodes every recover from radiotherapy? I need some positive feedback from this immunotherapy as I’m so disheartened I’ve not been offered surgery 

Hi Clara. It all sounds a bit strange. If the cancer is just in your lymph node you’d think surgery would be an option. Immunotherapy is expensive. Have you considered a second opinion? It’s easy to get one. Where abouts in the country are you and which hospital are you being seen at? 

Hi the cancer isn’t in my lymph node any longer it’s shrunk in the oesophagus but the surgeon at the hospital I’m at has said he’d have to “cut me in half” sounds very dramatic when people have lymph nodes all the time. I’m at the QE in Birmingham. I have read that surgery can be done but they have to be very experienced so I’ve found a top upper GI surgeon in Oxford that’s had training at the Royal Marsden so I’ll pay for a consultation with him. If he says not a chance then I’ll have to accept it’s just immunotherapy that’s going to help me now. I’m in Worcestershire.

You seem on top  of things. Fingers crossed for you.