Janet Tindall: "I don’t know if being on the clinical trial made a difference or not but I certainly had very good results"

Janet was diagnosed with ovarian cancer in 2015, aged 68 and participated in an Avastin trial. She reflects on the challenges of treatment and her journey so far.

"I‘d been experiencing a sharp pain in the right side of my lower abdomen and groin area. It moved around so an exact site was difficult to identify. It was especially painful when I walked any distance; I had to walk slowly and knew something was wrong. 

Other things were happening that I just put down to the fact I was getting older. I wanted to go to the loo more frequently, was falling asleep during the day, and had no energy.

I went to see the GP and explained the pain I was experiencing. I was examined by four different GPs on different occasions over a period of four to five months.  Each one told me nothing could be found, so I thought there must be nothing seriously wrong. I even had physiotherapy thinking it might be a tendon or muscle injury. Eventually the pain moved to my lower abdomen and at last the GP I saw wanted me to have a blood test. When the results came back and my CA125 level was 2300 (the normal value is less than 35), she thought it could be serious.

I was then fast-tracked and underwent a series of tests, beginning with an ultrasound scan and ending with a biopsy. The speed at which this happened was incredible and within three weeks of my blood test results, I was diagnosed with grade 3c serous ovarian cancer. The result was shocking, but not surprising.

I was fortunate that although there were many nodules, the cancer was contained in my omentum. Chemotherapy began a month after having the blood test results.

I was lucky enough to be offered a place on a clinical trial of Bevazizamab, known as Avastin, taken alongside Carboplatin and Paxitaxol. This was given to me as an infusion once every three weeks. The session in the Chemotherapy Day Unit was usually about six to seven hours but everyone was cheerful and we were treated to drinks, biscuits and sandwiches.

After four treatments of chemotherapy I went to see the surgeon who was to perform my operation. He told me I’d reacted so well to the therapy that no cancer could now be seen on the CT scan, and that the debulking operation might not be of any benefit. It was my choice whether I go ahead with surgery, or just complete the remaining chemotherapy sessions. It was a very difficult decision to make. I didn’t want the operation, but felt that if I didn’t go ahead there might be more chance of the cancer returning, so I agreed to it.

The CT scan after the surgery showed no discernible sign of cancer and that the surgeon had managed a clean cut. I was really pleased that everything seemed to be going so well.

Two weeks after the operation I was expected to resume the chemotherapy but I did not feel well enough to face it either physically or emotionally. I was just starting to feel better so it was delayed another week.   

I had some unpleasant side effects with the chemotherapy, aching muscles being the most severe, but I also had peripheral neuropathy in my toes and they had become numb. I was aware that this could be permanent and after discussion with the doctor the paxitaxel was omitted from the remaining two sessions.

Unfortunately for me I got a very bad cold a short time after resuming the chemotherapy sessions. I was coughing and sneezing day and night for two weeks. This weakened my abdominal muscles and has left me with an abdominal hernia.

I continued on the clinical trial having an infusion of Bevazizamab every three weeks until January 2017.

At the last clinic meeting at the end of January 2017 I was told that no cancer could be detected on the CT scan, I was over the moon. I don’t know if being on the clinical trial made a difference or not but I certainly had very good results and I feel privileged to have the chance of participating. I attend clinic every 3 months and so far so good; my CA125 level is down to 5 — who could ask for more?

My toes are improving gradually and give me no pain, and I am still deciding whether to have an operation to correct my hernia. Thankfully my energy levels are up and I am picking up life where I left it and am as busy as ever."

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