In this week's series Cancer - the cost of a life, Kiwi cancer patients have shared their stories of drastic measures they have taken in order to secure the treatments they need and Pharmac doesn't cover.
One reader, Rochell Adams of Blockhouse Bay, has shared her story of extensive research and travel to secure lifesaving treatments. The Herald has her permission to publish her story in her own words, which has been lightly edited for style and clarity:
"My battle with breast cancer has been ongoing now for almost seven years. It was St Patricks Day (17th March) 2009 when I received the devastating news that I had Infiltrating ductal invasive cancer, grade 2 ER/PR+ Her2- . As a 40-year-old, single mum to a beautiful 4-year old-boy, Kane, this seemed like a bad dream I was waiting to wake up from.
It was the result of a scratch from my cat that led to the diagnosis. At the time, I didn't think a lot about it until a couple of days later when I wondered why the area on my chest was still so tender. As a precaution, my GP sent me for an ultrasound and mammogram.
In just two weeks' time (on 31st March), I had a right mastectomy with reconstruction and removal of 12 lymph nodes, with two out of 12 positive [for cancer]. Then, two months later in May, I started a gruelling four rounds of chemotherapy which was completely debilitating and resulted in three hospitals stays due to neutropenia [a condition that leaves patients vulnerable to infection].
As a result, I suffered a further major setback in August 2009 when my body was not able to fight a post-surgery infection. When the implant actually ruptured the skin, I phoned my surgeon and he asked me to come in immediately to have it removed. The damage caused by this rupture meant I was unable to undergo the recommended radiotherapy.
Then, I waited a year to allow my body to heal before undergoing a TRAM reconstruction in October 2010. This procedure involves taking the abdominal muscle and part of your belly fat and skin to construct a breast. Whilst the majority of costs to this point were covered by my medical insurance, I had already spent approximately $15,000 of my own savings.
For the next three years, my health was affected by low immunity and I was monitored for any reoccurrence of cancer. Ironically, it was on Daffodil Day (30th August) 2013 that I was diagnosed with Stage 4 metastases in my pectoral muscle, bones, lungs, chest and lymph nodes. At this point my oncologist suggested radiotherapy, chemotherapy and hormone therapy. Having been given two to six months to live, my focus was on quality of life with my son, so I was reluctant to go through further gruelling treatment. However, when told that my neck could literally snap, I underwent radiation of the C1 and C5 vertebrates in my neck.
I was determined to find a therapy that would help build, rather than destroy, my immune system. Having researched numerous alternatives, I found an oncology clinic in Germany that specialises in monoclonal antibody therapy - in other words anything that ends in 'mab'! The catch was - and it's a big one - it would cost in the vicinity of NZ$90,000! It was only thanks to the incredible and humbling fundraising efforts of friends and family (as well as complete strangers via www.givealittle.co.nz/cause/rochell) that I was able to travel to Germany in October 2013.
There was so much concern about my health at the time: A dear friend accompanied me on the flight to Frankfurt and another dear friend, based in Holland, met us there and drove me to the clinic.
I spent three weeks at the clinic in Germany and a further two weeks at a Swiss clinic. On returning home, everyone was amazed at the incredible improvement in my health. Ultrasound results several months after returning home showed the tumour in my pectoral muscle had halved (from 30mm to approximately 15mm) and the MRI showed that the bone metastases were stable.
In mid 2014, the bone metastases were becoming active again and I was experiencing more pain. Having seen the great results from the treatment in Germany, my mum as well as my sister and brother-in-law were determined to get me back there. They effectively funded a further $90,000 trip to the clinic in June 2014. Whilst beneficial, the trip was not only physically but also mentally tough, being so far away from friends and family and, in particular, my son Kane. A very kind friend helped get me through by flying Kane to Europe. We were able to spend precious time together discovering our ancestry in Croatia.
A CT scan three months after returning to New Zealand showed the pectoral tumour had further reduced (to 8mm), reduction in lung metastases and signs of bone repair with less active tumours. Once again, these results proved the effectiveness of the treatment received in Germany.
Since the last trip to Germany, I have been taking hormone therapy as well as numerous alternative therapies - at a cost of more than $3,000 per month - to build up my immune system. These treatments include intravenous vitamin C, TBL12, mistletoe and other supplements and, whilst not clinically proven, I believe they have helped to extend my life.
The German clinic has recommended the drug, Everolimus/Afinitor, which they thought was funded in New Zealand, as it is in Australia. Unfortunately it is not funded in New Zealand. I requested funding from the [Ministry of Health] but they rejected my application and suggested I apply direct to the drug company, on compassionate grounds. Unfortunately, I was unable to find an oncologist to support this application as none had previously had any success with these types of applications.
The German clinic then suggested another drug, Ipilumamab, which they believe, in conjunction with the cumulative effect of prior treatments, would be effective for me. I am however unable to return due to Germany for this treatment due to the cost involved. They suggested I approach a local oncologist to administer this unfunded drug. Unfortunately, having spoken to a number of oncologists, none were prepared to administer it as they felt it was too risky.
I was hopeful that I could get on a trial for another monoclonal antibody therapy, Pembrolizumab but the NZ trial was only for triple-negative breast cancer. This drug is also funded in Australia. There is one other hope, an exciting new drug called Ibrance, available in the USA and being trialled elsewhere. It has had excellent trial results but is extremely expensive. By the time it gets funded in NZ, if that happens, it may be too late for me.
As you can see, I have explored - and continue to explore - numerous avenues for treatment (including medical marijuana), however I continue to hit brick walls with regards to funding and or accessibility. In the meantime, I do everything I can, within my means, to continue my journey to be here for my son, Kane."
• Breast cancer risks high for NZ women
• Tracey's story: 'I don't want to die unnecessarily early'
• Emma's story: 'My story might not have ended happily'
• Evangelia Henderson: Kiwi women are missing out on cancer drugs