An Auckland woman has revealed that the advice she was given from a US doctor in a Facebook group saved her life — after being told she only had months to live.
In 2018, Diana Craig was diagnosed with oropharyngeal (throat) cancer that spread to the lymph nodes in her neck.
After the 52-year-old underwent two radical surgeries, one that was life-changing that left her swallowing and eating compromised, and radiation, doctors told her the cancer had gone.
However, in May this year, in a follow-up appointment, the single mother was told by her oncologist that her cancer had returned in her right lung and the lymph nodes in her chest and was told she had 6 to 24 months to live.
Although Craig felt sceptical, she told PIX 11 it "felt in my heart of hearts that this was not right".
Distraught with the news, Craig contacted a Facebook group called Head & Neck Cancer Support Aotearoa for advice.
That is when she connected with Dr Sajjad Iqbal, a retired paediatrician from New Jersey who had survived salivary gland cancer for 18 years after he was told he had months to live.
After speaking informally together through Facebook and emails about her case, Iqbal advised Craig to get a second opinion from an oncologist who agreed with his suggestion that she undergo more aggressive immunotherapy with Keytruda.
It has proved successful so far, with her no longer having cancer.
Speaking to the Herald about her journey, she said she regrets not initially seeking other opinions while she went through her surgeries and radiation last year.
"I was panicked ... I had done some small research on the capability of the specialists," she said.
"I had wills to write and get everything in order for my pending operation in two weeks, not a lot of time to get life in order for who knows how long and unbeknownst to me it would take over a year to at least get my head above water."
After receiving the news that her cancer came back this year, she said she was shocked going from grade two cancer to grade four palliatives with months to live.
That was when she went online to seek help after being more familiar with how the hospital system worked, and its breakdowns.
"I wrote online to my head and neck cancer support group and let them know of my turn of events. I was then contacted by Dr Sajjad Iqbal who is also a member of the group but lives in New Jersey," Craig said.
"He scoffed at the idea of a life expectancy after my medical oncologist gave me a certain time and we were discussing chemical treatments and if I was eligible for Keytruda."
Sajjad told The Star-Ledger that after the test results came back with encouraging news, she had a good chance of responding well to Keytruda.
After four months of treatment, the new oncologist told Craig the six lesions in her lung, trachea and lymph nodes were gone.
"In conjunction with stereotactic radiation and Keytruda in my first pet scan after three infusions which is every three weeks, I had no metabolic movement which indicated that the cancer was no longer there," Craig told the Herald.
"It was a remarkable outcome in such a short space of time thanks to my new team and Dr Iqbal who pushed me to the right direction in the first place."
Cost of treatment 'not right'
Craig started a Givealittle page to help raise money for her treatment as it is not funded through New Zealand's public health system.
The treatment is capped at $73,000, costing Craig $8000 each week, thereafter the medication manufacturing company will pick up the cost.
"So the $8000 that I pay every three weeks doesn't hurt so much and will continue on every three weeks until I get more side effects that will compromise organs or it simply doesn't work," Craig said.
Craig, whose stepfather has been fighting cancer for over 31 years, believes it's not right that patients have to pay for cancer treatment.
"It is just not right, not when the outcomes like mine and my stepfather are working," she said.
"I thought having health insurance would cover me, it doesn't.
"Nothing will change until Pharmac increase funding so we are not at the bottom of the OECD."
In September, the Government unveiled plans to establish a national cancer agency which will be led directly by experts of the deadly disease, and a $60 million injection into Pharmac.
Other key details include:
• Cancer Control Agency to abolish postcode lottery.
• World-leading public health physician and cancer epidemiologist Professor Diana Sarfati has been appointed as the Ministry of Health's interim national director of the cancer control agency.
• A $60 million funding boost to Pharmac, $20 million this year and $40 million in 2020/21.
• A new system to fast-track Pharmac's drug funding decision process.
By December 1, the Government has promised decisions will come from a team of top cancer specialists who will report directly to Health Minister David Clark. That is the date the agency will officially be up and running.
Funding decisions will be made with an "equity first" methodology, the plan says.
Craig said during the time they talked together, Iqbal became her "mentor and guardian angel" who helped her be able to ask specialists the right questions.
"The late-night chats of concern and reassurance with his sound, calm and informative response gave me hope," she said
"He made me empowered to the point I was armed with the knowledge to 'interview' my specialists."
After the success the treatment has had on Craig's cancer, she and Iqbal met for the first time in person this week in New Jersey where they say they intend to advise this treatment to other cancer patients, PIX 11 reports.
"You have to have hope, but you have to be determined to take over your own health and be your own best advocate," Iqbal said.
Craig recommended others to read Iqbal's book Swimming Up Stream, where he recounts how he advocated for his health and relentlessly fought for a correct diagnosis.
"Him being a doctor and the battle that he had with the diagnosis he took upon himself to treat himself with an oncologist. And 16 years later he is still here. Battle worn, but still here," Craig told the Herald.
"This was something he wanted to help with after his retirement in a group now formed as Patient Empowerment group that he is actively involved in. Helping people to know what to ask because you don't know what you don't know."
Craig believes specialists only look into what they specialise in, which she said was understandable.
"But rather than having tunnel vision I think looking at the big picture or their colleagues' expertise could make for a good marriage."