Anal cancer - Immunotherapy

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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)

  • Dear Doingthebestwecan

    Thank you for contacting Macmillan. My name is Michael, I’m one of the Cancer Information Nurses on the Macmillan Support Line.

    I am so sorry to hear that your partner has been diagnosed with Stage 4 anal cancer. I can only imagine how difficult it must be supporting her at this time and the range of emotions you must be feeling.

    For stage 4 anal cancer people may be offered chemotherapy, radiotherapy or surgery, or a combination of any of these.

    Research is looking at better ways to diagnose and treat anal cancer, including the use of chemoradiotherapy with targeted drugs.

    Type of treatment suitable depends on several factors, including what type of anal cancer your partner has. The cancer team will be able to help you both, to understand what  treatment options are available and make sure you have all the information you need. 

    We would recommend talking to the clinical team, so you are aware of what treatment options are available. The team can help assess your partner for any suitable clinical trials.

    The main point of contact at the hospital is the key worker. This is usually the clinical nurse specialist. A team of healthcare professionals, called a multidisciplinary team (MDT), is responsible for her treatment and care. Members of her MDT and her key worker can answer any questions you have.

    The MDT looks at national treatment guidelines or the latest evidence for the type of cancer she has. If a treatment or drug is not available in your area or on the NHS, there may be other ways you can access it.

    Some resources that you might find helpful, in addition to your clinical team and Macmillan Cancer Support, are Bowel Cancer UK and the Anal Cancer Foundation.

    We also have our anal cancer support forum.

     

    I hope this has been helpful.  

    With best wishes,

    Michael

    Cancer Information Nurse Specialist 

    You can speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email

    REF: MH/AD