Hi everyone, would like to invite anyone who is willing to support us to join our Facebook group immunotherapy campaign UK .we have set up this group to address the blanket policy of NHS England that stops patients life saving immunotherapy after 2 years, regardless of how well they are responding to treatment. There is absolutely no definitive clinical proof that stopping immunotherapy after 2 years is in the best interest of all patients. You can read the NICE guidelines on their website where they themselves state " it is unknown the optimum treatment duration for pembrolizumab/nivolumab". Unfortunately the 2 year limit is more of a funding issue, pharmaceutical companies are forced to advise this limit purely to make it cost effective to NHS England. Clinicians are having their hands tied by these guidelines and I have spoke to many who believe their patients would benefit from a longer course of immunotherapy. Patients do not even have the option of restarting immunotherapy if their cancer were to progress in the future, instead they are being told they will have to rely on harsh chemotherapy, radiotherapy or other treatments that were not successful first time around, failing this they could hope to get enrolled on a clinical trial. Please show your support for this cause, so we can try to get this one size fits all policy reviewed, i am not only appealing to patients on immunotherapy but anyone affected by lung cancer and who someday may need immunotherapy as part of their treatment. I have put a link to our Facebook group and we also have a website you can join to show your support. Thanks for your help.
Immunotherapy group: Hi everyone, would... - The Roy Castle Lu...
Immunotherapy group
Done! Thanks x
This sounds like a good plan and a way of monitoring immunotherapies effectiveness ,so I am happy to be apart of this ; considering that come February 2020 ,I would have been having Keytruda successfully for a year . If only they could develop cheaper oral alternative it would cut some of the costs I am sure this is a way forward .Diane
Thanks Diane, need all the help we can get. How are you fairing on your treatment, what sort of response have you had, and how are you feeling generally? X
Hi At the beginning of 2019 my already stage 4 lung cancer metastasis were on the march .More early lesions in my brain left lung and ? Cardiac Mets growing externally to my heart .I started on a trio of chemo Altima,carboplatin and pembrolizumab with a very good response .All my lung Mets have remained stable or have shrunk and after 4 cycles of the initial group ,I have continued just on pembrolizumab with so far good effect .Intially it upset liver ,but this settled down with a 10 day course of steroids ,I have episodes of itchy ness odd light rashes and vaginal swelling which settled on it own after 5 days .I do have cardiac issues racing pulse and irratic episodes when my pulse drops very low ,I had problems with this before so I take sotalol and have had a pacemaker since 2017 .It is sometimes worse than others know one really knows why . I have mobility problems since 2017 after SBR to a brain met ? Scar tissue this hasn't resolved my numb and drop foot on my left side making walking tricky.However it is no worse so that is good .At the moment I am having 6wkly doses of immunotherapy it seems to be helping and stopping progression so I am pleased in theory I should be able to get it for another year fingers crossed .I cannot think beyond that ,I know I wouldn't be here if not for this type of treatment .Diane
My Mum part 4
Update - Immunotherapy treatment
Cessation of Pembrolizumab immunotherapy after two years
Have you had a good experience with your lung cancer nurse specialist?
Bilirubin levels and immunotherapy? 
