Andrew’s Story

During November 2012, Andrew visited his GP surgery concerned about a pigmented patch and small spot which had appeared on his face to the left of his nose. At this point he was told there was no concern. In August 2013, he had a fast-track referral as the spot had grown large and was weeping and a lump had appeared on his neck. The spot was removed by surgery, there and then. The melanoma continued to spread to his lungs, liver, spleen and vertebrae. In July 2014, his melanoma was confirmed to be stage 4 and he was told that without treatment he would have around 3-6 months to live. Fortunately, he had 1 dose of chemotherapy (the standard treatment prior to immunotherapy treatments and then 2 out of 4 doses of immunotherapy (Ipilimumab). Here, he shares his full story:

During 2012, I visited my local GP surgery with concerns about a pigmented patch and small spot which had appeared on my face to the left of my nose. I was informed by the locum GP that there was no cause for concern. A few months later I noticed that the spot had grown large and was weeping, and a lump had appeared in neck. I then had a fast-track referral to a dermatology unit and the spot was removed there and then.

“The month that followed involved lots of scans, an MRI scan, a CT scan, a PET/CT scan.”

In September 2013, I had an ultrasound scan and biopsy on neck my neck which revealed that melanoma cells had been found in a lymph gland in neck, and therefore I needed a neck dissection operation to remove the network of lymph glands on the left-hand side of my neck (standard treatment at the time). The month that followed involved lots of scans, an MRI scan, a CT scan, a PET/CT scan along with a pre-op assessment in preparation for my neck dissection operation and wider excision that took place at the end of the month.

Unfortunately, in July 2014 it was revealed that the neck dissection did not stop the melanoma spreading as three more lumps appeared on my face and neck and scan revealed metastatic tumours in my lungs, liver, spleen and vertebrae. The neck dissection operation in October 2013 was not a complete waste of time as the MRI scan that I had prior revealed that I had a benign brain tumour, a meningioma. They said then that it was not a problem, but, if it continued to grow, it would create pressure and become a problem.

“My oncologist confirmed the gravity of the situation and the aggressiveness of the cancer. He told me that, without treatment, I only had 3 to 6 months left to live.”

Once it was confirmed that the melanoma had spread around my body, I was informed that from a surgical point of view nothing more could be done and an appointment with my oncologist was made for the following day. My oncologist confirmed the gravity of the situation and the aggressiveness of the cancer. He told me that, without treatment, I only had 3 to 6 months left to live! After discussion about possible trials, which would mean delays, and possibility that treatment might not be able to start for 3 weeks, I agreed to have 2 doses of dacarbazine chemotherapy (the previous standard treatment prior to immunotherapy treatment) but he only gave it a 10% chance of working! If it proves not to be working, then he can get funding for an at the time new immunotherapy drug called “ipilimumab”, which has a 50% chance of working.

On August 1^st, 2014, I had my first dose of dacarbazine. A few days later I had an urgent appointment with my oncologist and told him I felt as if “I was being strangled alive”. He felt the lump appearing under my chin, which is another melanoma deposit, and agreed to start the first dose of ipilimumab in 2 weeks’ time, instead of the 2^nd dose of dacarbazine. (Felt better then as 50% chance of working seemed much better odds!).

“A few days later it was my daughter’s wedding, and I conquered my first goal- walking her down the aisle.”

On August 22^nd I received my first dose of ipilimumab with the only after effect was to feel a little shivery that evening. On September 12^th I had my second dose of Ipilimumab with no side effects. A few days later it was my daughter’s wedding, and I conquered my first goal- walking her down the aisle.

Unfortunately, just before my third dose of ipilimumab I had to have an emergency steroid injection as the levels relating to my liver were 10 times higher than normal. I was put on course of high dose steroid tablets for next 5 weeks, reducing gradually to zero. My oncologist explained that this over-reaction meant that I was unable to have any further “ipi”, but they will monitor my blood levels very closely over the next 5 weeks, and then CT scan quarterly. I was put on a schedule of CT scans every 3 months and at the end of October I had 5 daily appointments to have radio therapy on the lump under my chin.

My first set of CT scans revealed that my tumours had reduced considerably, and the lump under my chin had almost completely disappeared. During 2015 the tumours reduced by 50% and the CT scans were reduced to 6-monthly and then 12-monthly.

After I had survived for 6 years, my oncologist suggested that they look at the meningioma. I had a further MRI scan which revealed that it had grown by 25% and I was then referred to a neurosurgeon. I had never enquired exactly where the meningioma was in my skull and was surprised to learn that it was between my eyes, above my nose and he was surprised that I wasn’t getting blinding headaches and blurred vision. However, if I didn’t have something done about it, I soon would. So, on 5^th November 2019, I had an 8-hour operation to remove it and have made a full recovery. The only long-term side-effect is that I now have no sense of smell.

I had my last routine CT scan in March 2023 and my oncologist phoned me in April 2023 with the good news that I was clear and had been for the previous 12 months and he was going to discharge me.

What advice would you give to other melanoma patients?

Follow medical advice and always remain positive.

I had good advice from the lead doctor at the Penny Brohn Charity, where they recommended books to read, including “Radical Remissions”, by Kelly Turner, an American who had spent 5 years studying cancer and been around the world interviewing 1000 patients who had survived cancer against the odds, all different types of cancer, and she identified the 9 common themes they shared. The most important were diet, exercise and positive mental attitude.