Dinah: "Niraparib has given me hope"

Primary school teacher Dinah Lewis shares her experience of ovarian cancer and the maintenance treatment niraparib.

Back in 2017, I was a 55-year old-primary teacher with three grown up children. I loved running and led a busy life. I’d noticed I’d had some discharge for a few months and eventually went to the doctor. After three months of lots of different antibiotics to treat a suspected infection I had a blood test. When the doctor asked my partner to come in, I knew it wasn’t going to be good news. 

I was diagnosed with ovarian cancer and my surgery was booked for the following month. Sadly my tumour caused blood clots and despite being on blood thinners, I had a cardiac arrest. Thankfully, I was just outside my local hospital and recovery was pretty quick. I was able to have my surgery albeit a few months later than planned. 

Unfortunately, four weeks later I had a huge bleed in my pelvis and spent ten weeks in hospital, including three weeks in intensive care. I had been due to have chemotherapy six weeks after the operation but I was too ill to have it so again, my treatment was delayed. Then two months later my cancer had returned. 

Palliative care

I met the oncologist who gave me the news that treatment would be palliative now. I had missed the window after my operation when chemo would have been most effective. I started six months of chemo (carboplatin and taxol) in September 2018. Despite losing my hair I tolerated the chemo well. The tumours shrunk and there was no evidence of disease. 

I had a fab year travelling and did really well for nearly 12 months. We visited Rome for the first time and treated ourselves to a very luxurious hotel. We also stayed with friends in the beautiful city of Granada and the beach resort of Nerja in Spain. Our favourite holiday was last February, just before Lockdown when we spent time in Seville where we tried tapas at the local markets, we then headed to Jerez for sherry tasting, and finally a few days at the beach in Cadiz. Definitely lots of fantastic memories. But unfortunately the cancer was picked up on a routine scan in January 2020. I tried tamoxifen for a few weeks but this didn’t have any effect. In May 2020 during covid I started another six months of chemo (carboplatin and caelyx). Again my tumours responded well. My oncologist in December said I’d be eligible for niraparib. This was such a relief. The only alternative would have been chemo when the tumours grew again, which I know they would at some point. But niraparib gives me hope to have more time to continue to enjoy life. As my oncologist pointed out, more chemo is an option but the gaps between chemo will get shorter and less effective. Niraparib has given me hope. Avastin has not been an option for me due to the problems I’ve had with blood clots. 

I am on my second round of nirparib now and have minimal side effects. I monitor my blood pressure daily and discuss this regularly with my medical team. My blood pressure did rise initially and it’s still higher than normal but not enough to cause concern. The drug did at first give me some insomnia but that seems to have settled down. The list of side effects was long but luckily I’ve had very few. 

Living life to the full

I’m living my life as fully as I can given the Covid restrictions. I walk every day - sometimes up to five miles and look after my two grandchildren. I also enjoy spending time with my two younger children who still live at home. I‘ve really enjoyed the online exercise and yoga classes with Ovacome as part of the Staying Connected programme. I’m doing an online watercolour class at the moment. I’m looking forward to the gym opening again as I love swimming and travelling again. I’ve  also already booked holidays in the UK this year to Northumbria, Devon and Cornwall! 

I daren’t think about how long Niraparib will work but it’s given me an alternative to just waiting to have more chemo, knowing that eventually chemo will stop working.

Niraparib (also known as Zejula) is a maintenance treatment for ovarian cancer. It is now available to newly diagnosed ovarian cancer patients in England. To find out if niraparib could be a treatment option for you, ask your oncologist. Find out more here.