BATTLING: Deanna Trevarthen and Greg Robertson, defying the odds with Keytruda. PICTURE/HERALD ON SUNDAY
Dr Richard Sullivan didn't share Deanna Trevarthen's hope that Keytruda would help her win her battle against malignant pleural mesothelioma, one of the deadliest forms of cancer. Now they're not so sure.
Deanna and her partner Greg Robertson, both former Northland Age employees now living in Auckland, were told at Deanna's first pre-treatment meeting that it would be a miracle if Keytruda worked. And a miracle is what they say they are seeing.
"We decided to go ahead with (Keytruda) despite the 1/500 odds. They were much better odds than she was facing. Getting her to that first treatment itself was a miracle too," Greg said.
Deanna had now had two rounds of self-funded treatment, at a cost of $45,000. (The on-going cost is $10,000 every three weeks).
Keytruda usually took four treatments to show signs of working, but Deanna (who in February was given three to five weeks to live) didn't have that much time.
"We were banking on it aiding her total treatment package immensely, just a one-off treatment. We were right, thankfully.
"The tumour owned her. Hospice struggled and struggled with pain medication. Her hospice room was ice cold, I was wearing four layers of clothes in the height of summer and I was freezing she was sweating. She was there for three days and had had enough, so I brought her home. She wanted to be at home."
Dr Sullivan had pronounced Keytruda's results as a "mixed bag," some tumours decreasing in size and some new tumours developing, but "overall, and in context, the results were amazing."
Deanna's last scan, on February 9, had been devastating. Chemotherapy was no longer working, and she was failing rapidly downhill.
"Suddenly we were at North Shore Hospice, and it looked like the end, but we have (cancer) on the run for the moment.
Richard put it best. "Just look at her. A different person."
Hospice nurses who were here every day once we came home now come once or twice a week, and only really to check the medication pump drive sites for infections. They are gobsmacked at her recovery. Everyone is."
Deanna, he added, was suffering the worst type of cancer with the worst types of tumours, but still Keytruda was working, as far as experts could tell. But there was still another battle to be won. Greg had no doubt that Keytruda would be government funded within weeks or months, but only for melanoma patients.
"Should it be available for all? Of course it should, for all who are out of options and the system says only palliative care is available," he said.
"My take is that once the government-led medical system says there is nothing they can do and tell you to get your affairs in order, the gloves come off. Patients should be able to try any and all drugs they want that are available, and Keytruda, if funded, fits into that category of whatever might work.
"My experience from all of this is doctors do not know it all. In Dee's case they have turned out to know very, very little. So if they know little, how can a government draw legislation on who is allowed to use what?
"Keytruda can be a miracle and should be available to all. Making it just for melanoma patients is a great step in the right direction, but take a snapshot of the big picture and it's the government that would then be holding knives to the throats of so many. They are then doing the killing. Suddenly you don't have a government but an organisation playing God, picking and choosing who can use it and who can live.
"Too many decisions are based on money. Even doctors are making too many decisions based on money. We have been told that many within Auckland would not have treated Deanna from the start. She was a lost cause. Thank the heavens for Richard Sullivan saying everyone has a right, otherwise Dee would be dead right now.
"To those doctors making the money decisions, the wrong decisions, find another profession. There is no room for this kind of doctoring that does not take into consideration heart, mind and the often unbelievable human spirit to live despite everything. Dee is the perfect example of just that."
- Letter to the Editor - A message for cancer.