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“Immunotherapy is a game-changer” – Glenys’ story

04
Sep
2023

Glenys Gregory recently became a grandmother, but at one point, she’d wondered if she would live to see him born. In January 2020, Glenys was diagnosed with advanced lung cancer after nursing her mother through the same disease. Due to the coronavirus pandemic, she went straight onto immunotherapy and a scan in summer 2023 revealed that she had no evidence of disease. Here she tells her story.

Posted on 04 September, 2023 by Glenys Gregory

Glenys and her husband David smile for a selfie

Image: Glenys with her husband David. Credit: Glenys Gregory

I first noticed something was wrong when I started to get pain in my shoulder on the right-hand side going down to my arm. I was a healthcare assistant for 30 years and was working at a GP practice when one of the doctors said I looked unwell. I told him about the pain, and he suggested I needed an urgent CT scan. My GP submitted a referral because of the symptoms and my family history – both my mum and my auntie had died of lung cancer in the eight years before.

Unfortunately, the referral was declined. No reason was given to us, but we paid for a private CT scan. And it showed lung cancer. The only symptoms were the pain in the shoulder, shoulder blade and down to my elbow. That was it.

I knew it was bad news

As soon as the GP received the scan result he called me in, and as I worked in healthcare, I knew it was bad news. I thought it might be breast cancer. I didn't think for a minute it would be lung cancer. I don't know why, I just didn't.

I couldn't believe it. I had nursed my mum through her illness and cared for her in our house for the last three months of her life. I wondered if I would have to go through everything that she went through. It was very daunting and scary.

My husband Dave was with me at the appointment and we were due to go round to friends for dinner that night. When we came home after seeing the GP, Dave was crying and I was barely holding it together. And he said, “Oh I don't feel like going out tonight”. I said, “Well, if you think we're going to sit and look at each other and squawk all evening, you’re wrong – come and get your coat on, we're going.” So we went and had a meal with our friends.

I went straight onto immunotherapy

Everything happened quite quickly after that. I had all the tests and biopsies and then there was a bit of delay in the treatment because it was early 2020, at the start of the Covid-19 pandemic.

When I first saw the oncologist he told me, “We're going to get radical with this, so it's radiotherapy, chemotherapy, immunotherapy – we’re going to throw the book at it.”

But when the coronavirus pandemic hit, things all changed. I went straight onto immunotherapy – a drug called pembrolizumab.

Glenys, her husband and son dressed smartly smile to the camera standing next to her daughter, a bride in a white dress and veil holding a floral bouquet

Image: Glenys with her family at her daughter's wedding. Credit Glenys Gregory

I had a reaction to the treatment

My oncologist agreed that I could have the eight sessions of treatment at home which was really good as Dave was able to be with me, and he wouldn’t have been if I had been in hospital during lockdown. The nurses came into our home with the immunotherapy treatment – it was so much more relaxing, and I was able to have a bit of banter and fun with them.

But I did have a reaction to the pembrolizumab – swelling in my face, breathing problems, light-headedness, coughing and swollen veins in my neck and chest. I had a week’s radiotherapy to combat that, then restarted on back on the pembrolizumab in May 2020.

I had to pull myself up

After that I had more reactions - severe rashes, terrible colitis, and inflammation. I had the odd stay in hospital and usually I’m a very positive person, but there were two occasions when I thought, ‘I just can't do this’.

I had swelling and I couldn't breathe. I couldn't string a sentence together. It just absolutely floored me. I could walk a few steps and then I was totally out of breath. And I thought, ‘If this is my life, that's it. I don't want it.’ But I knew I had to get out of that mindset. I told myself, ‘You've got a great family. You can get over this. It’s ok to get these downers, but you have to pull yourself up.’ The colitis lasted a long time, on and off over twelve months, but it did subside eventually.

I had about twenty sessions of pembrolizumab in total – I was going to have a couple more, but the side effects were too bad for me and I stopped in May 2022. I’m still getting some side effects which can flare up at any time - but I’m told that's a good sign because it shows the treatment is still working.

Glenys, cradles her newborn grandson Jacob and gazes down at him

Image: Glenys with her grandson Jacob. Credit: Glenys Gregory

I want to give other people hope

In May 2023 I went for a PET scan as I hadn’t had one for three years. The following month I had an appointment to hear the results. It wasn’t my usual oncologist and they just looked at the report and said, “Complete remission”.

Well, to walk in thinking you've got stage four cancer, and then to be told that... My husband burst into tears, and I told him not to start crying as I had questions!

I’m grateful to have been given the chance to be treated with immunotherapy. I’ve been told it’s one of the most promising new cancer treatments and that in some cancers like mine, immunotherapy has been a game changer, even for treating advanced disease.

I’m telling my story because I want to give other people hope and inspiration. Once you get a diagnosis, it's not all doom and gloom - there are options and immunotherapy is a great one. It doesn't work for everybody. But there are amazing outcomes out there.

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Tags

Amanda Swain lung cancer immunotherapy pembrolizumab immunotherapy appeal advanced cancer stage 4 diagnosis
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