Stage 4 Tonsil Cancer

Hi MC2 and welcome. Sorry to see you here but you sound a good advocate for your father so I hope something more hopeful can be done.

There are quite a few trials going on with immunotherapy and one I know does involve a therapeutic vaccine, so it is worth seeking a second opinion. 

Where is the cancer in his throat? Has anything been done about that as the primary source?

Radiotherapy isn't used in a curative setting in the chest I don't think but it certainly is in the throat. Where is your father being treated?

Thank you so much for your reply. The primary source is the tonsil and it has spread to the lymph nodes in the neck, and now the mediastinal lymph node in the chest - this is why he has been categorised as incurable stage 4.

However, I have been reading examples of doctors who perceive this area as still ‘locally advanced’ as opposed to ‘distant’. Has anyone else experienced this type of metastasis? 

Immunotherapy alone has been offered to us with no targeted treatment to cure. I will definitely take the advice of this forum and seek a second opinion 

Do let us know how you get on with any second opinion xx

Hi MC2 Welcome from me sorry you’ve found yourself on here on behave if your father. I woujd certainly ask for a 2 nd opinion Is your father being seen at one if the large cancer centres ? Or a city hospital you can always ask for a referral elsewhere. Is the tonsil cancer not  being targeted with chemo and radiotherapy? 
Hazel 

Hi there, he is being treated at UCLH but we are getting a second opinion from the royal marsden. Currently the only treatment he has been offered is immunotherapy, which they preferred as a systemic treatment versus chemo. So far there is no plan for targeted radiotherapy to try and kill the cancer which is there. It feels like they have given up on all curative measures, but even if we can’t cure it, I think the radiotherapy should keep it at bay better than just immunotherapy? 

MC2 said:

Hi there, he is being treated at UCLH but we are getting a second opinion from the royal marsden.

The Marsden is certainly at the forefront of treatment for head and neck cancer so you should get a definitive answer from them. Good luck

HunAs Dani as already said the Royal Marsden is certainly at the forefront of head and neck cancer research. If yiu can pop back in an please let us know the outcome , always useful for any future patients. I wish you both good luck.Immunotherapy has been having very good results for many patients. 

Hazel 

In case it’s helpful, both the marsden and UCLH recommended immunotherapy so that’s what we are doing. We asked for prognosis stats and were told 1-2 years, but that there are some patients who far exceed tis time span on immunotherapy (4-5years and beyond). Does anyone know of anyone like this? We are looking for good news stories wherever they are :( 

MC2 said:

Does anyone know of anyone like this? We are looking for good news stories wherever they are :(

I know two people on long term immunotherapy. One is very well with stable mets at two years and his doctors are continuing the Nivolumab past the usual two years. 
Another is four years on in a trial involving Atezolizumab

Im sure your oncologist has told you it doesn’t work for everybody but brilliantly well for others so fingers crossed. 

Thanks Dani that’s helpful. We have been offered Pembrolizumab. None of the above drugs were mentioned to us. Hard to understand why one is used or recommended over another?