Kerry's story

"It feels like I'm being a bit cosseted by a team of professionals who are very invested in me."

Hi, I'm Kerry, I'm 51 years young and I'm based in the beautiful Shropshire Hills. I live with my husband, Steve and our cat Sidney. I have 2 lovely teenage stepsons called Arthur and Joseph.

My primary diagnosis was in 2013 (when I was 39) and I underwent a mastectomy (no reconstruction but an awesome tattoo!), chemo, radiotherapy and hormone therapy. I first became worried about some symptoms being related to secondary breast cancer in Oct 2021, but it wasn't until June 2022 (at the age of 48) that diagnostics were finally implemented which led to my diagnosis (after multiple GP visits.) My initial sign was worsening back pain, starting as almost a 'tweak' escalating to excruciating pain over the next few months, collapsing at work and an A&E visit confirming metastases in my thoracic and lumbar spine causing spinal compression. I needed emergency surgery for 8 screws and 2 rods to be inserted into my spine to stop paralysis. Another emerging symptom was just utter and debilitating fatigue. I also then found out it was in my ribs, pelvis, right hip and lungs. That was devastating news.

I'm a plotter and a planner. I'm a vet as well so I'm used to researching and wanting to understand further what is going on. I searched the internet and that's when I found out about the Make 2nds Count charity and the Clinical Trials Service. I quickly made a telephone appointment for for a telephone conversation, even though I was unlikely to want a trial as I was on my 1st line of treatment. I just wanted to know what was out there, the possibilities, maybe it gave me hope?

I'm currently on a trial called ELEVATE as my 2nd line treatment (after 28 months on my first line before progression) I'm ER + Her 2-, I was on abemaciclib + letrazole as 1st line. After progression, I was tested for the ESR1 mutation and I was positive. A new drug, elacestrant, had literally just been approved by NICE so I was eligible for that as a monotherapy as standard of care treatment (ESR1 +ve and >12 months on 1st line CDK4/6i + AI).

Before I knew any results, I was already on the phone to Make 2nds Count to get more advice regarding available trials and that's when I found out about ELEVATE. This trial is investigating the safety of elacestrant as a combination therapy with multiple different arms to it. I was allocated to take ribociclib (400mg) alongside elacestrant (400mg). I've currently been on the drugs for 2 weeks and have to wait another 6 before I get my first scan. I've even already been on the phone for a 3rd time to potentially find out what could be next! Again, I might not need it (yet) or do it when the time comes, I just like to be informed.

For anyone thinking about clinical trials, I would say just book an appointment for a phone call. The nurses are so informed and empathetic that it feels almost like therapy just talking to them. Knowing there's options feels hopeful and forward thinking and maybe a little bit about taking some control back during difficult times. You can ring as many times as you need. I liked the fact they kept my previous information so that I didn't have to go through my history all over again, which would be exhausting.

Going on a trial is not easy though. I had to wait quite a long time off treatment and jumping through lots of hoops with regards to blood tests, CT, bone scans before even knowing if I was eligible. That was really hard mentally. The first few weeks were difficult and tiring. I have to travel over an hour (to Liverpool) for my treatment and one week I was up there 4 consecutive days. The first 3 visits, once I was accepted onto the trial, were weekly, I've now got fortnightly visits for 3 occasions, then it should be monthly ongoing. I do get travel expenses, so that helps too.

The biggest benefit to me is that I am getting a combination therapy which has the potential to be more efficacious than standard of care monotherapy and this is not available on the NHS. I am monitored closely and this feels like I'm being a bit cosseted by a team of professionals who are very invested in me being on the trial. I had a difficult experience with my local hospital and its lack of care when I was diagnosed metastatic, so this feels like the first time that 'my team' have got my back. It's a nice feeling.