New Hope For Us Living with Cholangiocarcinoma

Wow, what a week it has been. I knew that cancer would be pretty life-changing, and it has been, but none more so than the last 5 days.

You may well have already heard the announcement last Thursday that NICE (National Institute for Health and Care Excellence) approved the availability of Pemigatinib in the UK for patients living with Cholangiocarcinoma.

I was so excited to hear this news as, having been on this targeted therapy since the end of April, I have had an amazing response to it, both in my quality of life and the effect it has had on my tumours. I would LOVE to see other people able to access this treatment (based on a positive FGFR2 gene fusion)

If you have not seen coverage of this announcement, please do have a read through the article below, taken from the AMMF website:

Now, the reason this has been a busy week for me is that this news provided a surprising opportunity to tell some of my story from diagnosis to how I am now, since starting Pemigatinib.

Incyte Biosciences had been in touch with me shortly before NICE approved this new treatment option and asked if I would be comfortable being interviewed on radio and TV. For someone who doesn’t even like having a photo taken by my own children, I surprised myself by saying yes…no hesitation.

This was far bigger than my own vanity or embarrassment. After all, I refuse to be fearful of cancer, so it is just plain daft to be scared of speaking about it. From only a few days after my own diagnosis, I was determined to use my diagnosis in a positive way, however small that may be. Raising awareness of Cholangiocarcinoma and making my own cancer journey available for others to see is the reason for this blog, so I was determined to go for any opportunities, should they come my way.

I was able to speak on BBC Radio Sheffield with Professor J Bridgewater – Professor of Medical Oncology, UCL Cancer Institute, University College London Hospitals NHS Foundation Trust, and BBC Radio Leeds with Helen Morement – CEO and founder of AMMF the Cholangiocarcinoma Charity. I will also appear on BBC Yorkshire TV later today (I believe) with Helen as well. I felt extremely privileged to tell my story alongside Helen and Professor Bridgewater.

I also got to speak about my diagnosis on Hallam FM – solo, which was a bit daunting, but it did give me the chance to talk about symptoms that led to my eventual diagnosis, how this had impacted my life and that of my family, and how I have been since starting the Pemigatinib.

I’m not sure I’ll be able to listen to me talk – that’s a step too far, but I am proud of myself for going for it, and if makes a difference to one person listening, then it absolutely was worth it all.

If you have recently been diagnosed with bile duct cancer, please ask your oncologist about molecular profiling. Although only a small percentage of patients have the FGFR2 gene fusion, it gives us one more treatment option. For me, and so many of us who are classed as inoperable, it brings so much hope.

I personally would like to thank everyone who was involved in working so hard to make this new treatment available, as well as the lovely people I have spoken to at Incyte, for giving me the opportunity to be part of this amazing news. It has been such a positive experience, for which I am truly thankful for.

To read my own experience on Pemigatinib, click here

Much love and strength,

Megan x

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