Wendy: "If Elahere were approved, it would mean that it would hopefully buy me more time to be with my family."

Wendy* was diagnosed with ovarian cancer in 2023 after blood tests showed she had raised CA125. Since then, Wendy's faced a vast amount of treatment. Now she hopes Elahere, if approved, could buy her more time.

*Wendy's name has been changed.

"I was diagnosed with Ovarian cancer stage 3C high grade in June 2023, when I was 60 years of age. Blood tests had shown I was anaemic, and with it they saw my raised CA125 levels. I was found to have 2 pelvic tumours with widespread metastases, and I'm BRCA-.

I was told I would have 3 carbo/taxol, an operation and then 3 more carbo/taxol. I mentioned my daughter was getting married the next May, and the registrar said I would be better by then!

I started Carboplatin and Paclitaxel on the 28th August 2023. I had 4 rounds before having a laparoscopy. They told me I was inoperable. I had the last two rounds of chemotherapy, when the last one, bevacizumab, was added. By May, my CA125 started creeping up again, but at the time, they put it down to having shingles.

The bevacizumab was discontinued in July, and a scan showed the tumours were growing. An application was put in for the PICCOS trial. Unfortunately, I was turned down because I had come out of remission more than 6 months after chemo finished. I believe I have never been in remission, and if I had been scanned within 6 months, it would have shown that the tumours were growing.

In September 2024, I started on Doxorubicin and should have had it with carboplatin. Due to a lack of communication, I didn’t start the carbo until the 2nd dose of Doxorubicin. I had 4 rounds of Doxorubicin and 3 rounds of carboplatin, and then I had a scan. The scan showed again that the chemo wasn’t working, but my CA125 did start going down a month after finishing the chemo. They’ve deemed me now to be platinum resistant.

In Feb 2025, I started paclitaxel weekly for 18 doses. I was also put forward for the PICCOS trial again, but because there was a pericardial nodule, I was turned down. I asked for a second opinion from the surgeons and was told that because the cancer was in the mesentery, I couldn’t have an operation.

I finished the paclitaxel and was told there was nothing else except trials. I saw my surgeon in August, but she still refused to operate - but she did try to get me on the PICCOS trial. Unfortunately, I got on the trial, but not to receive the PIPAC treatment – instead, I restarted 18 doses of paclitaxel. I was so disappointed. On my scan in November it showed my tumours are growing again.

I finished the paclitaxel in February, and I've been on a break since. I've had CT scans in Feb, April and May. It shows the tumours are increasing, but the rest of the disease is stable. In March, after I’d mentioned Elahere after seeing it on the Ovarian Cancer Action Facebook page, they said they'd ask for the biopsy taken in July 2023 to check if it's FRa+. But the same thing was said in April.

I saw my Doctor on Tuesday and she said she would chase it, but that it’s still not quite available yet. I was told in March that there’s a new immunotherapy coming at the end of the year, and they're going to try and keep me well enough for it.

I worry about what the mets are doing. I've been told by my consultant that not everything shows up on a CT scan.

I want any treatment available; my daughter is trying to get pregnant, and nothing's happening. It would be lovely to see her have a baby. Also, my son lives with me, and he’s having a hard time. I want to be here for him. I don't have a partner, and if something were to happen to me, I worry where he would live. I worry so much about how he will be when I'm not here anymore.

If Elahere were approved, it would mean that it would hopefully buy me more time to be with my family."