Paul from UK

My name is Paul Thomas-Peter, I’m 59 years old and from the UK. In early 2014 I was diagnosed with squamous cell carcinoma of the skin on my right temple. It was removed and I was assured that it rarely spread. Later that year I found tiny lumps near my right ear, they were removed and it was confirmed that my cancer had metastasised.

I went on to have a partial neck dissection to remove all the lymph nodes and the parotid gland in the right side of my neck. I then had 35 days of radiotherapy combined with two doses of platinum based chemotherapy. My treatment ended in November 2014 and I was told there was a good chance of a cure.

In March 2015 the results of a CT scan showed that despite the treatment, my cancer had spread to the mediastinal lymph nodes in my chest. I was told it would continue spreading, it was terminal and no further treatment other than palliative care was available. I was told I had between 3 and 18 months to live.

I have never accepted that nothing could be done, I tried a number of natural therapies including changing my diet, details are in my blog: This seemed to slow down the rate of spread but never stopped it.

My wife Helen and I continued looking at possible treatments and in late 2016 read about immunotherapy. We found that it had shown remarkable results in cases of my cancer and similar cancers. We discussed the possibility of receiving immunotherapy with our oncologist in York and had a second opinion at the Royal Marsden hospital in London. Essentially, although the drugs we wanted had been approved for use within the NHS they were not approved for my specific cancer, so I couldn’t be given them even if I paid for them myself.. The attitude of the NHS to immunotherapy was negative and it didn’t seem that the people we spoke to had much knowledge about it.

In January 2017 we read an article in The Sunday Times about people funding their treatment abroad and this article mentioned The Hallwang Clinic. We contacted them immediately, had my diagnosis and previous scan results sent to them and they were positive about my prospects. They insisted on testing my tissue samples before committing to a treatment plan which reassured me of their professionalism and knowledge. They phoned me at home after the tests were complete, explained what had been found and explained what treatment they felt I should receive, noting that it had an excellent chance of success.

It was a breath of fresh air to be spoken to as an adult and have things explained rather than being treated like a 6 year old who wouldn’t understand. I felt they were on my side, trying to cure me and would do their utmost to do so. I have to admit I was in tears after the phone call, I had hope again.

We attended the Hallwang Clinic in early March 2017. By this time I had survived 6 months longer than my NHS oncologist’s outside prognosis but I had gone downhill rapidly during January and February 2017. I believe that in early March 2017 I only had weeks to live, I was short of breath, had difficulty walking for any reasonable distances and had developed a terrible cough due to the tumours in my chest.

The doctors and staff at the Hallwang were incredible, they treated me like an adult and it was clear they had my best interest at heart. I had my treatment and the reasons for deciding on it explained in some detail which gave me confidence in it as I like to know what is happening. I was treated with different immunotherapy drugs, a personalised combination of treatments aimed at what my specific cancer was doing inside my body. Because of how ill I was, I was also put on a short course of antibiotics and also a low dose of chemotherapy in tablet form to prevent my condition worsening before the immunotherapy treatment began to work. I also had a PET CT scan so that we knew exactly where we stood and can measure the effects of the treatment.

This approach is something I would never have received from the NHS or any medical facility in the UK whether I paid for it or not. It is leading edge treatment, but well documented not experimental, it is personalised to me and my cancer.

The facilities at the Hallwang Clinic are excellent as well; the rooms are clean, spacious and well equipped, the food is excellent and the atmosphere is positive. The facilities allow for relatives to stay with you and there is 24 hour medical cover although I haven’t needed it thankfully.

The treatment began to work within 3 weeks, which is earlier than expected.. Tumours visible on and in my body began to disappear, some overnight. I had an examination by my NHS oncologist who was surprised by the results but critical of the treatment.

After 12 weeks of treatment at 3 weekly intervals a recent scan showed all my tumours had disappeared or reduced in size significantly. I am certain I am on the road to full remission. I have suffered very limited side effects and now have an excellent quality of life. The treatment is not cheap but we consider it money well spent, I would be dead now without this treatment, my recovery to date is like a miracle.

From here, we move forward into largely uncharted territory, this is new treatment so there is limited information about long term survival. However, I am confident that I am not now going to die in the near future and if I only get a year or two of good quality life it will be more than worth it to my wife and I.