My partner was diagnosed with Stage 4 anal cancer before Christmas and I am desperate to leave no stone unturned to try and help her.
Having so far been treated with chemotherapy, she will shortly be having a scan and then a consultation with her oncologist but what appears to be the established treatment for Stage 4 anal cancer seems pretty limited : chemotherapy and possible radiotherapy (although even then, the latter is not a given as far as I can see)
By trawling through the McMillan website and online generally, I have found that immunotherapy appears to have returned encouraging results (at least extending survival) but these appear to have been in trials and nothing appears to be available as far as I can see for Stage 4 patients with mestastic spread. I have seen mention of two immunotherapy drugs - Nivolumab and Retifanlimab.
We are by no means rich, but being totally desperate and looking for any hope of helping, would like to at least explore costs of privately obtaining immunotherapy drugs as they appear not to be available to anal cancer patients on the NHS
Is there anyway to find out an idea on what ballpark the costs might be but also as important, how would you even go about getting them if they are not commonly available other than perhaps in trials ? (In the case of Retinfanlimab I think that some Stage 4 patients were involved in a trial carried out at the Royal Marsden but that finished at the end of last year) My understanding is they have tended to be administered/ complemented alongside or with chemotherapy, so being a total novice in this area, would somebody have to go private for both the chemotherapy and the immunotherapy if you were able to source it or could you have chemotherapy on the NHS but then go somewhere else for the immunotherapy? (which seems unlikely if they were administered together)