Immunotherapy we need you….


So the time has come to put our faith in science and hope to God that I am one of the fortunate ones! The Chemo and Avastin approach has not been successful and as a consequence has left me very weak and needing to put some serious weight on. The Scan results were not so good and have shown that there has been some growth and spread of the cancer.

I start Immunotherapy and Crizotinib on Friday 17th March as my final treatment option. This usually takes a couple of months to reveal whether it has had any effect, so by Easter time we should have a better idea of whether it is working or not.

Crizotinib involves taking a tablet once a day which means people avoid hospital which in turn frees up staff.The pill usually costs £51,000 per patient for a course of treatment.  Crizotinib is licenced for use in people whose cancer has a specific genetic mutation known as ALK-positive. Whilst my tumour did not show up as ALK-Positive, the tests for this genetic mutation are still fairly primitive and there is a chance it has not been detected.


Immunotherapy Nivolumab (Opdivo) is a human monoclonal antibody (immunoglobulin G4) that blocks the programmed cell death‑1 receptor (PD‑1). This receptor is part of the immune checkpoint pathway, and blocking its activity may promote an anti-tumour immune response. Nivolumab has a marketing authorisation as monotherapy ‘for treating advanced (unresectable or metastatic) melanoma in adults’. It is administered intravenously over 60 minutes at a dose of 3 mg/kg every 2 weeks. The summary of product characteristics recommends that ‘treatment should be continued as long as clinical benefit is observed or until treatment is no longer tolerated’. The acquisition cost of nivolumab and the nurses to administer it is £11,156 per month.


So this should hopefully give everyone an idea of what is going to be involved over the next few months and in the mean time we wait. I fully intend to make the most of this time, planning trips to see family and possibly even a holiday if I can manage it (no medical Insurance though!)

Can I just take the opportunity once again to thank each and everyone of you for making this treatment possible and for all of your love and support through this god awful journey. I hope no-one ever has to go through this again, but I fear they might until we find a cure. I hope that the result of me having the treatment helps with research and most of all I hope if anyone does have to go through this, they are surrounded by the love and affection that I am, because it is the only thing getting me through.

I will be in touch again when I have any more news.

Charley & Jess


2 thoughts on “Immunotherapy we need you….

  1. Vic says:

    Uncle Brian updates me regularly and I just wanted to wish you the very best of luck with The immunotherapy…I’m blown away by your fierceness and fight Charley… I know how much love and support you have around you…and am sending oceans of love and healing hugs…Vic 🌸💗


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