It began late 2014 when a mole on my right shoulder started to itch, then in December it began to weep and I needed to wear a small dressing. I left seeing my doctor until after Christmas, initial treatment being antibiotics and dressings applied by the nurse as seepage worsened. I was then referred urgently to a dermatologist at the beginning of February, who examined my body and recommended 3 moles should be removed and biopsy performed. This showed that the shoulder mole was cancerous. MRI and PET-CT scans showed no spread.
I had surgery to remove a 20mm strip either side of the mole and to remove 5 sentinel lymph nodes, 3 of which were cancerous. This resulted in further surgery a month later to remove another 30 auxiliary lymph nodes of which 9 proved cancerous.
I was referred to the Royal Marsden to participate in a double blind trial of Ipilimumab or Nivo over one year, to see if either would protect against skin cancer returning after successful surgery. The prerequisite scans showed melanoma had already spread into both lungs, the liver, with residual in lymph nodes under right arm and into the lower spine, left thigh and as a hole in my rear left hip bone. This meant the trial was not applicable and urgent treatment with Ipilimumab was recommended.
I decided to undertake this treatment nearer to home at St Luke’s. This commenced early July with Ipilimumab, plus Zoledronic Acid to assist with repairing the bones and to help resolve the backache. There was immediate relief for some of the backache. But towards the end of the period after the second treatment and an enjoyable holiday in Devon with my family, I had a side effect which was just about controllable. We agreed to proceed with the third dose of Ipi which proved too much for my immune system. I ended up in hospital for one week suffering dehydration, loss of nearly 2 stone and mild colitis (subsequently upgraded to severe).
A high dose of steroids gradually reduced the side effects and reversed the impact of Ipi on my immune system. Because of this the back pain returned 24 hours a day, requiring a variety of pain killers. Guidance and superb support from the Oncology team was vital, including the urgent need for a low irritant / high fibre diet. In the meantime a further growth appeared on my shoulder just outside the area previously treated. I had a course of radiotherapy on the growth, which seemed to halt further growth. Plus a course of radiotherapy on my hip to help reduce the pain. I then had to go through the process of weaning myself off steroids, to be ready for a new treatment, Pembrolizumab, which NICE had just fast tracked. I was one of the first to be treated at RSCH under the NHS.
After the first treatment in early November 2015 it was tough going for the first two weeks and then there were gradual improvements. I was feeling better which showed the treatment was working. The growth under the skin on my shoulder had totally disappeared, which the consultant said was most likely due to Pembro (in just 2 weeks). To address the back problems I was referred to a physiotherapist at a local hospice.
I kept track of and submitted a spreadsheet for each treatment period, with daily recording of: medication, location and level of pain, my activities and overall feeling. Also maintained a chart detailing the size of growths in each place.
After second Pembro I continued to improve, with back pain gone apart when lifting too much. Also able to sleep through the night. A CT scan (21Dec15) just prior to 3rd dose, showed amazing results, cancer in left lung initially 2.5cm now nearly gone, right lung fine, liver 1.7cm reduced to 1.3cm, central lymph node down to 0.8cm, left shoulder growth gone and the hole in hip had not increased (Zoledronic Acid will help to close). No pain killers required since end of December.
After 4th Pembro I had a bad spell from 3-11 days after treatment. Lower back pain worse when sitting. Undertook daily bridge exercise recommended by the physio.
Results of PET-CT scan were unbelievable, the cancer had effectively gone from all areas, just two specks in spine at L1 & L3 thus ring of pain around back. Started a weekly exercise session at the local hospice with other cancer suffers to improve movement, especially my back.
After 6th Pembro pain around waist and on hips had increased but able to mow lawn downhill. Weight back up near normal.
After 7th Pembro back better after exercise sessions, which gave me confidence to resume my weekly badminton sessions.
Results of CT scan showed good in all areas with liver reduced further to 0.8cm and hole in hip shown just as scarring. The 9th Pembro was delayed by one week due to inflamed liver.
Results of MRI & PET scans showed no activity which meant cancer had gone. The only inflammation was in a couple of places in the lower lumber, probably due to the poor state of my discs.
11th Pembro no more backache when waking up in the morning.
Results of PET scan showed excellent response with no residual, structural or functional abnormalities identified including the hip.
Results of MRI & PET (3Nov16). Excellent results showing no sign of cancer, all clear including bones and no change compared with previous PET. Decision taken to stop treatment of Pembro as continuation in some other cases had caused problems with the immune system. The immune education rendered by the pembrolizumab should continue to fight any re-appearance of cancer.
Subsequent 3 monthly scans have been clear with no sign of cancer. As each month has passed I have felt better, my backache has gone, I have become stronger and continue to play with and look after my grandchildren when needed. Badminton continues and the more active I am the better I feel. This year’s holiday has involved quite a bit of swimming, as well as helping my grandson with his swimming.
The treatment and support from the oncology teams, the hospice, the surgeon, and my doctor has been exceptional throughout.