I hope you get some helpful responses to your question. Our nurses may have some suggestions for you or may be able to point you in the right direction. You can ring them on this free number 0808 800 4040, Monday to Friday from 9am to 5pm.
You might also be interested in reading more about our research on immunotherapy here.
Thanks for posting a question. I am one of the nurses and Lucie our moderator wondered if we could help.
Unfortunately I don’t think that we can be particularly helpful in this matter and I will explain why.
Immunotherapy is an umbrella term for a number of different drugs. If you are interested there is some quite good information about what it means on the website of the American Cancer Society here . Although it is American information much but not all will be relevant to the UK.
Before a drug becomes available it has to be given a license (marketing authorisation) and it is quite a stringent process to get this. The authorisation allows doctors to prescribe drugs for specific cancers in precise circumstances only. There are not really any immunotherapy drugs that are licensed to treat bowel cancer other than the monoclonal antibody cetuximab. This is freely available on the NHS to patients in combination with chemotherapy for bowel cancer that has spread. But it is not useful for everyone as it is only suitable for people with specific features on the cancer cells. The new immunotherapy drugs that you may have heard about in the media are not licensed for bowel cancer.
In theory a doctor can prescribe a medicine outside of its licensed indications this is called ‘off label prescribing’. But there is a relatively short list of available immunotherapy drugs. Also before they do off label prescribing the doctor needs to check that there are no alternatives and they must be satisfied that there is sufficient evidence to demonstrate safety and efficacy. They should also be experienced at using the drug. There is not currently strong evidence to show that many of the newer immunotherapies are useful for bowel cancer. More research is needed. So this could be a stumbling block to any doctor prescribing them off label even if someone was prepared to pay privately.
Also the newer immunotherapy drugs are not without side effects some of which can be life threatening. So because of this there is likely to be a reluctance to prescribe off label. So I think that it will be a tall order to get treatment privately.
I am sorry as I realise that this reply will be disappointing. If you have any other questions you are welcome to get back to us. If you would like to telephone our free number is 0808 8004040. We are here from Monday to Friday between the hours of 9am to 5pm.
Hi there Nia, its' a long time since I've logged on to the forum, but I have been a member for several years. Lately, I've had a lot going on, so didn't get on here a lot. I have colerectal lung cancer, (secondary to colon cancer), along with bladder cancer, but that's a different story. The reason your post caught my attention is because I attended an information session on Immunotherapy as I am now considered incurable and wanted to know if I would be a candidate for trials that were being considered for where I live, i.e. Canada. I was told no because there were very specific requirements, which apparently, I don't meet. As I understand it, one of the requirements is that your cancer has to be genetic, which I was led to believe mine was by a former general practitioner I had at the time of diagnosis. I was also given info on the side effects which scared the "you know what" out of me. I had serious side effects with the chemo treatment I was given at the time of my first diagnosis 7 years ago, and as a matter of fact, they had to stop the treatments or I would have died. I understand the immunitherapy is quite new and not a lot is known about it yet, so careful consideration has to be given to anyone considered for the trials.
The information I have is very scant and may not be totally accurate. Your best bet is to gather as much info on it that you can from reliable sources. This forum is a good place for info based on sound research and I know when they have that information, it will be made available to forum members. If you want to private message me, feel free. We do have something in common here.
Hi Lorraine,
Thankyou for your message.I was enquiring about immunotherapy on behalf of my sister.She was diagnosed with advanced colon cancer in September 2015 and is now on her third type of chemo which has only recently been licensed here in the UK.
Until another CT scan we are unsure to whether this chemo is being effective.However due to her symptoms currently we don't think it is unfortunately.
I have learnt how complex the immunotherapy requirements are through researching on the internet but there is so much information out there that it is mind baffling! Unfortunately my sisters consultant is not very good and not forth coming with other routes available out there and I feel it's more a matter of who you know in order to get any worth while links.
Unfortunately,as with many others I feel we are facing a losing battle.I hope you remain as comfortable as possible and are able to live a good quality of life.
Many thanks again for sharing your experience.
Warm Wishes
Nia
Hi Nia, so sorry to hear your sister is living with this very challenging disease. Treating cancer is so very complex that even the medical people are sometimes baffled by the avalanche of information out there. I wish your sister a gentle journey and hope something can happen for her that will work. I would suggest that you check in here on the forum from time to time to stay up-to-date with reliable sources for new treatments. Also, it is a very supportive forum for cancer patients and their families/caregivers to give and receive support as it can be a very lonely journey for sure.
Take care and all the best to your sister and your family at this trying time.
