Melody’s story

Melody Ransome is a mum of two children and a Persistent Placental Site Trophoblastic Disease PPSTD survivor thanks to initial small trials of immunotherapy treatment for the disease in 2015. This is her story.

“My husband and I were blessed with our first pregnancy and our daughter Megan was born in 2006 and three years later our son, Dylan arrived in November 2009. I had no idea at any point that pregnancy can result in cancer.”

Lead up to diagnosis

My journey started on Saturday morning – 7th September 2012. I was teaching my six-year-old how to make scrambled eggs, my two year and 10-month-old son was playing in the lounge and my husband, Donovan, still upstairs asleep.

I felt what I can only describe as pins and needles start tingling down my spine and then spreading out from the middle of my back around my left side; up into my arm and down my left leg. Suddenly I couldn’t bear any weight on my left leg and couldn’t move my left arm, I collapsed onto the kitchen floor and shouted out to Donovan for help. He came running down from the upstairs bedroom and carried me to the sofa. After a few minutes I had regained control of my arm and leg; but felt weakened on the left-hand side of my body.

With two young kids to tend to, the incident was pushed to the back of my mind, I put it down to a pinched nerve from my last pregnancy almost three years before and carried on with my day as usual. In truth the symptoms had started two or so weeks before. I had noticed a niggling cough had developed over a couple of weeks and had seen the doctor about it. He wrote out a prescription and advised me to get the antibiotics if I needed it and I went to the pharmacy on that Saturday morning and started the antibiotic course.

On Sunday morning after a restless night, I found on the left side of my neck a visible palpable bulge. I thought it must be my thyroid – that would explain the extra weight and my slightly protruding belly. I was sure there was no reason to panic and resolved to go and see my doctor first thing Monday.

Fortunately, I was seen on the Monday morning with an emergency appointment. My doctor booked a chest x-ray at my local hospital and a biopsy was ordered for the lump on my neck. Thankfully little happened except the night sweats, until the Thursday morning when I drove to the hospital. My left arm started jumping about of its own accord! I used my right hand to put my left hand back on the steering wheel and I was able to control it enough to drive to the hospital.

After the x-ray the radiographer asked me to wait, he needed to speak to the consultant. After a few minutes he said I could go, but to make an appointment to see my doctor; the next appointment was available a week on Tuesday, so I booked it and got on with my day forgetting to mention the jumping arm incident.

I was caring for my sick son when I heard the phone ring later that day. I ignored it so I could deal with my sick child first, but when it rang for the third time in quick succession, I thought I best answer. It was my husband sounding a bit distressed, my doctor had called him as they couldn’t get hold of me, I needed to go see them – immediately.

I carried my poorly baby to the car and drove to the doctor’s. My doctor for many years came out of her office and hugged me when I got there. I asked straight away if I had cancer, she looked at me in surprise and said I did, but they didn’t know where the primary was.

I had no emotion. Just flat. Blank. Nothing. Only questions. What do you mean primary? What must we do now? Will I die? Who will look after my children? Numb I fetched my daughter from school. I cried, I called my mum and my sisters. Donovan arrived home and we cried.

The next morning, Friday 21st September, I was admitted to Charing Cross Hospital A&E and saw a lung specialist, Dr Bowen. Urine and blood samples were taken. A nurse asked if I could be pregnant, I told her it was unlikely as I had a Mirena coil. She said my hCG was raised which is usually an indication of pregnancy – this is the first time I became aware of hCG the count that would monitor my cancer for the rest of my life.

The urine test was positive, I fell back on the A&E bed in horror, not only did I have cancer, but I was possibly pregnant too. I had no idea the hCG was a result of the cancer. The nurse said: “If you are not pregnant, we might know what this is but need to do more tests”.

That night after an MRI and CT scan I was put in a room by myself. I lay in bed trying to process the shock of it all. I was so afraid but ready to face whatever was coming. I had to …who was going to look after my children?

Diagnosis

The next morning a doctor came to see me with an entourage of registrars. He stood at the foot of my bed and quietly stated: “Mrs. Ransome has tumors in her lungs, liver, kidneys, pancreas and brain. Choriocarcinoma probably”.

Another doctor – Dr Savage came to see me a while later. He tried to explain about the disease, but the list of affected organs was still ringing in my ears. I was then taken for an ultrasound. The sonographer said during the scan: “We know what this is and it is treatable.” I burst into tears – I could dare to hope, I could breathe again albeit with a cough for now.

Somewhere in my mind I thought they would give me a few pills and I would be home again; that was not to be. 7 days since my collapse in the kitchen I had my first round of emergency chemotherapy.

First line treatment

Naively, I thought I had caused my cancer and asked if it was because I smoked when I was younger?

My dad had died from Hodgkin’s disease in the 1990’s, was it genetic? I had HPV in my early 20s, was it from that? I asked Dr Savage he indicated it was none of these that caused this disease. It was caused by pregnancy.

I was transferred to a private room until my seizures were under control – it was a nice oasis of calm, but I found it incredibly lonely and isolating. I was told the loss of control to my left-hand side was due to the brain tumors bleeding. The seizures had become more frequent since I had been admitted and I was referred to a neurologist who showed me scans of my brain – I had three in total, one in parietal lobe and two in the cerebellum. Over the next few days, the right drugs had to be found to control the seizures. I remember, during a check-up being asked to touch my head with my eyes closed; oddly I couldn’t find the top of my head with my left hand, this was very distressing, but fortunately this went back to normal over the next few weeks.

After three weeks I was discharged – finally I was going home. My body was not my own. I felt like I was being destroyed one cell at a time. Between the Chemo and the pills that had to be taken on schedule this new reality was about dealing with the “now”, the next hour and possibly the next day, but nothing beyond that. Thinking about the future was too painful, the possibility of not having one and not being there for my children, was almost too much to bear.

The next five months would be a rollercoaster. Lifesaving chemo which made me feel awful but gave me hope, to not being able to have treatment and having blood transfusions instead which made me feel better, but desperate for the next dose of chemo which I had to wait for and try again a few days later.

With the end hCG count always on my mind it felt like I was in ‘The hCG race’ target to reach less than two for eight weeks. At first the levels seemed to drop in leaps and bounds, but then slowed right down and the last few numbers seemed to take the longest. And then the good news, the magic number! Would it stay down? Was it over?

The first time I was so happy, relieved, who wouldn’t have been? The journey was done! I celebrated my 40th birthday with all my friends and family telling me how well I looked – BUT I felt just barely alive.

I started working on the 10th April 2013. It was really challenging, my brain was in a fog, everything all jumbled. I was exhausted by the time I got home. I could hardly spend much time with the kids before falling into bed. Thankfully day by day my strength started to return.

Relapse and Second line treatment

Weekly blood test turned to monthly blood and a urine test. Then one day the dreaded call came. Charing Cross specialist nurse: “We need to see you”.

I had felt a lump had started to grow on my first left rib – but I was sure this was because of the mediastinoscopy, which had been done to confirm the co-incidentally found and suspected sarcoidosis in the lymph glands in my chest.

Pathology confirmed the diagnosis Placental Trophoblastic Disease and that it was from my son’s placenta. The second diagnosis was much harder to accept. Now I had experience to look back on. It was like I had studied so hard for a test and failed.

We started the process of a stem cell transplant and more chemo. I was admitted on my son’s 4th birthday into a dull, cold hospital room with a view into the hospital aircon plant building, sadly I thought, if I was to die here this was to be my last view of the world. I was in isolation, totally closed off from the world, it was a very dark lonely place to be.

And so, the seven days of chemo started down to day zero – transplant day. I could feel my body weakening by the hour, my taste buds turning on me and my mouth and throat a war zone. Day 0, stem cell transplant was delivered intravenously. By this point I was beyond tired, lifeless and empty of thought or desire or want to do anything. Waiting each minute was like an hour and an hour like a day.

I seldom saw anyone apart from the occasional nursing staff. I could only call friends and family so much as I didn’t really have much to say after all I had been in a dull room by myself for days on end. The respite came in the evening when my husband would bring our kids. This was so hard, I wanted to see them and show them how well I was, I was going to be ok. They were afraid and worried I could see it on their faces and there wasn’t much I could do to reassure them.

After a few weeks of stem cell treatment, my cell counts went up and I could go home a week later. I had lost a lot of weight mostly muscle mass and decided the only way I was going to manage the second transplant was to try and rebuild as much as I could before then. I joined the gym and kept up the power shakes, good diet and rest. I then had the second stem cell transplant. I tried to keep the exercising up in the hospital, but by day three of the chemo I was too exhausted.

Relapse and Third line treatment

All was well until October when the hCG count was on its way back up again. I had another tumor on my lung which I had removed with surgery. That tumor was successfully removed, but the hCG count climbed again and a few more tumors appeared in the liver. The operation sounded horrendous, and I decided against it. I decided to take some time off and I flew back to South Africa to see my family and friends, possibly for the last time.

When I arrived back in the UK, I started the next round of treatment. GEM/tip which had a terrible effect on me, I was very weak and unfortunately it did nothing to the cancer. We stopped the treatment, and I went home on the 1st of April 2015. By this point I was so weak I could do little more than move from room to room and rest.

Miracles do happen!

On 2^nd April 2015, I was lying on the sofa at home wondering what my death would be like when I received a call from Professor Seckl’s office. They had a drug that was not on the NHS approved drugs list, but if we could get a charity to sponsor it, NHS would manage and monitor it. I agreed to meet with the people from the Harris and Trotter Charitable trust fund. They came to see me the following day – It was Good Friday the 3rd of April. I could hardly believe total strangers were prepared to support me. There is not one day that goes by that I am not grateful for their generosity.

Professor Seckl recommended the trial with the immunotherapy drug Pembrolizumab and Harris and Trotter agreed to fund me. This was all very cutting-edge treatment which had not been used on this cancer before, but there was an indication it may work, so I agreed and started the trial on the 1 May 2015.

The treatment was a small bag of clear liquid given intravenously, 30min later I was on my way home, no side effects and no additional drugs. I had no side effects over the next three weeks and was able to get on with my day-to-day activities and slowly I began to feel better. The light in my eyes came back, even my daughter said my eyes didn’t look grey anymore. After a second round of treatment, the blood test showed the hCG count had dropped by 50% and each week after that 50% and by the first week of July I was back to “normal”. Prof. Seckl decided to continue a further six treatments, the last was in October 2015. My hCG count has remained the same ever since.

Life after cancer and the importance of Immunotherapy trial

Every day I am grateful for my life and cherish my time with my children.

My energy levels took around 1 year to return to normal, but the brain fog took at least 2 years until I realized my memories and ideas were flowing again. My confidence levels were shaken, and it has taken some time to find my stride. Physically I am well and much more aware of my health, I eat better, and in general take better care of myself. I still struggle with tinnitus and neuropathy in my feet.

All was looking so good, and it had been 5 years since there was any trace of the cancer. A routine urine test showed raised hCG and started down the uncertain road of scans and diagnosis again. Thankfully it was the devil we knew, and the immunotherapy treatment worked its magic again. I am still in remission at the time of this writing in 2024.

This has been a challenging journey and one I could only have made because of Professor Seckl and the team at Charing Cross Hospital, to whom I am eternally grateful.

Professor Seckl and the team at CTRT are fundraising money to enable their researchers to run a trial of the same life-saving immunotherapy treatment that was given to me for women with GTD whose first round of chemotherapy has not completely eradicated the disease. This trial is needed to provide evidence that immunotherapy is effective in curing the disease and the researchers hope this evidence will convince the NHS to make this a standard line of treatment for women who have not been cured with chemotherapy.

I cannot express how important it is to enable the immunotherapy trial to go ahead. Women like me, who are diagnosed with GTD and are not responding to traditional chemotherapy deserve to have a chance of survival. I urge anyone to support the campaign and donate money the best way they can.