Melanoma New Zealand

Melanoma New Zealand Nurse Educator Gill Rolfe has spent much of her career working with melanoma patients. Now, she is supporting her husband through his own battle with the disease after he was diagnosed last year, just as they were about to start their retirement.
Gill's vast experience in this field has made her an advocate for sun safety and regular skin checks. She has always been particularly vigilant with her family members, especially the redheads among them.
She says that, given Terry's number of moles and the years he spent working outside in England without a shirt on, she took every opportunity to go over his skin and look for suspicious lesions.
Late last year, Gill noticed a pink spot on his lower back and kept an eye on it. As soon as it became raised and itchy, they immediately made an appointment with a skin specialist in the community to get it checked.
Gill says both she and the specialist thought it had the characteristics of a basal cell carcinoma and were both shocked when his biopsy results showed he had a 3.3mm ulcerated melanoma with a mitotic rate of 5 – which Gill explains is how fast cancer cells are dividing and growing.
"It was reasonably fast growing and needed treatment, so if we hadn’t had it checked and left it any longer, it would have been deeper and possibly spread further. As the specialist said, sometimes biology throws unexpected things at us," says Gill
"Terry was referred to North Shore Hospital for further treatment. He then had a sentinel node biopsy, which involved injecting dye into the excision site and having a scan to see where it travelled and which lymph node the melanoma was draining to. He had the two nodal basin biopsies taken from his groins and a PET CT scan with a wide local excision performed at the same time. Thankfully, all the results were negative."
With no family history of melanoma, Terry says he never thought about skin cancer, particularly back in the 1960s when he said no one used sunscreen in England.
"If you were working outside, you would get burnt, go red, and peel. It wasn't until people started to go to Europe on holiday, where it was warmer, that they started using sunscreen."
He said his attitude changed when they moved to New Zealand more than 20 years ago.
"I remember putting a chair outside and thinking I'd have a quick suntan, and in about 10 minutes, I could feel myself burning - which is when I knew you couldn't sit out in the sun here."
Unfortunately for Terry, the damage had possibly already been done.
After his diagnosis, he was selected to be part of a clinical trial, which was open to patients with stage 2b to stage 4 melanoma.
The 12-month study, which is now closed to recruitment, involves 17 three-week transfusions of pembrolizumab (Keytruda) plus the study drug vibostolimab.
Gill explains that it is a randomised, double blind study, which means neither the participants nor the medical team knows who actually receives vibostolimab.
"The great thing about being on a clinical trial is that the patients get regular access to otherwise unfunded drugs, checkups with the same people, three monthly CT scans, blood tests every three weeks and a consultation two days before their infusions.
“We're hopeful that the drugs will mop up any cancer cells that might have strayed into his bloodstream that aren't visible on scans yet."
A side effect that Terry experienced from the trial was a severe rash all over his body, which meant he had to come off treatment for a period to have steroids to clear it.
Unfortunately, after resuming the trial, the rash has returned.
Gill says there is a risk that he might have to stop treatment because the study drugs can disrupt the body's immune system, resulting in thyroid issues or accelerated diabetic risk.
Despite these issues, they both feel extremely fortunate that Terry has had the opportunity to participate in the study.
"This treatment is usually funded only for stage 4 melanoma patients in New Zealand while their bodies respond to it, which not everyone does. If you are not stage 4, you could pay up to $107,000 a year for adjuvant therapy," says Gill.
Gill advises other melanoma patients to speak to their GP or other specialists to see if they are eligible for clinical trials.
Terry says he is grateful Gill has always encouraged him and the family to be safe in the sun and check their skin.
"The consequences of sunburn and lots of UV radiation can result in melanoma. Make sure you know your skin so you can spot something new or changing.
"Like other regular Joes, I wouldn't know what to look out for without Gill's experience, especially pink spots.
"We live on three acres, so I have a lot of lawn to mow and could be out there for a couple of hours. I'm always well covered. I wear long pants, a hat, sunscreen, and gloves.
"If you get melanoma, it's not just about getting the mole or spot cut out; it's all the stuff you have to go through afterwards. It's a journey."

Our Winter 2024 issue of Spot News is available now. 👍
In this edition, we are proud to announce the launch of the Melanoma New Zealand Research Fund – partnering with Cancer Research Trust New Zealand to bolster opportunities for impactful research focused on improving melanoma outcomes and patient experiences in New Zealand. 👊
This issue also features a story close to our hearts, with one of our very own Nurse Educators, Gill Rolfe, sharing how she and her husband, Terry, have navigated Terry’s recent melanoma diagnosis and treatment. 🙏
We introduce our newest team member, Nurse Educator Jade Castaños-Bosnić, and hear about the team’s success at Fieldays, among other stories.
Click here to read Spot News - https://melanoma.org.nz/winter-2024-newsletter-spot-news/ 👌

Our Pop-Up Pod is being couriered around the country over the next few months for various corporate events, so it was reassuring to see it go off in Rohi from Post Haste's safe hands. 🙏
We want to thank Post Haste for helping us by offering us their not for profit special rates! 👊👍👌🥰

Although today’s announcement of a Pharmac funding boost is a significant and positive step for medicines access in New Zealand, uncertainty and concern remain for many melanoma patients in New Zealand.

Pharmac will receive an extra $604 million over the next four years towards an estimated 54 drugs (26 of which are for cancer). National had previously committed to 13 new cancer drugs it would fund, but six of those (including, according to reports, treatments for melanoma) were not included in today’s announcement and will now be replaced by alternative drugs that are either “as good or better”.

New Zealand has the worst mortality rate of melanoma in the world, so funding of more melanoma drugs is welcome and very much needed. However, those melanoma patients who relied on the promise of their drugs being funded could now miss out, and all melanoma patients are still in the dark as to what treatments will be funded and when.

“The need is urgent – cancer patients don’t have time to wait in hope for answers and for funding,” says Melanoma New Zealand Chief Executive Andrea Newland. “No patient who relied on these promises should be left out. Access to essential medicines must be a priority for improving health outcomes and saving lives.”

We will continue to advocate on this issue on behalf of melanoma patients and hope the details are confirmed soon.

*You can watch the video of melanoma patient and advocate Victoria Hudson-Craig’s reaction to today’s announcement here: https://www.newshub.co.nz/home/politics/2024/06/how-the-government-s-funding-of-54-new-drugs-will-work-and-who-misses-out.html

Melanoma New Zealand is thrilled to announce the launch of the Melanoma New Zealand Research Fund, which aims to support groundbreaking research to enhance melanoma outcomes and patient experiences in New Zealand.

In partnership with Cancer Research Trust NZ, Melanoma New Zealand is dedicated to funding research that advances early detection, new treatments, and improved care for those impacted by melanoma. Together, we are striving to make a real difference in the fight against this disease.

The Melanoma New Zealand Research Fund is now open for applications across a diverse range of areas, including prevention, early detection, patient wellbeing, precision medicine, technology, immunotherapy, and more!

Whether you are a researcher, clinician, advocate, or philanthropist, there are countless opportunities for you to get involved and contribute to our mission.

Visit our website to learn more and find out how you can be part of this exciting initiative: https://melanoma.org.nz/all-about-melanoma/research-fund/

Melanoma patient Sarah Barr is disappointed with the government for failing to fund the 13 essential medicines promised before the election.
Like many cancer patients in New Zealand, Sarah was faced with just two options after her diagnosis: self-fund treatment or wait for a check-up in six months to see if the cancer had progressed.
For the 35-year-old mother of two, not having treatment wasn't an option despite the exorbitant cost, having lost her mother to melanoma when she was just 13.
She has had to sell two businesses and reach out to her community to fund her treatment, which costs $75,000 a year plus around $2000 per treatment for administration.
"It's unfair of the government to say, 'We'll do this' and get the votes from people because they said they were going to do that and then not deliver. It's just not good enough, really."

Video credit - The Press/Stuff Limited.

Cancer patient misses out on drug funding due to the government's U-turn. | Stuff.co.nz Read more: Sarah Barr has stage 3 melanoma and has missed out on funding of her cancer drugs due to the government's U-turn | Subscribe: https://bit.ly/2JPg8...

Melanoma New Zealand is one of 16 cancer organisations to sign today’s following open letter to Prime Minister Chistopher Luxon, Minister of Finance Nicola Willis, and the Associate Minister of Health (Pharmac) David Seymour:

https://tinyurl.com/2zjn2ccj

The Government has failed cancer patients in Budget 2024 by not providing additional funding for new medicines, including not honouring its commitment to $280 million over the next four years to give access to 13 essential cancer treatments.

Three of those treatments promised were for melanoma, and Melanoma New Zealand’s Chief Executive Andrea Newland says it is inhumane to hold out a much-needed lifeline to patients and then not deliver on that. Improving health outcomes and saving lives must be a priority.

Due to a lack of funding, melanoma patients in New Zealand are not able to benefit from advances in treatment to the same extent as those in many other OECD countries. Unless these patients in New Zealand are willing to pay for the treatment themselves, find a way to raise the money from family, friends and their community, or go overseas, they have no access to these lifesaving and life-extending treatments.

The need is urgent – cancer patients don’t have time to wait for future budgets to receive the promised medicines.

Melanoma New Zealand will persist in its efforts to engage with the Government and other stakeholders on this critical issue.

The Government's announcement to increase Pharmac's budget by $1.774 billion over the next four years is a start, but more needs to be done, says Melanoma New Zealand Chief Executive Andrea Newland.

"This funding boost is welcome, however we hope there will be further announcements in Budget 2024, including that the Government will meet its manifesto commitments on new cancer treatments and provide Pharmac with an additional $280 million (or $70 million per annum) for the 13 additional cancer treatments (including three melanoma treatments) from 1 July 2024.

"New Zealand has the worst incidence and death rates of melanoma in the world," says Ms Newland. "The advancement in treatments available to melanoma patients in the last 10+ years has been extraordinary. Yet, New Zealanders have not been able to benefit from these advances to the same extent as melanoma patients in many OECD countries because these treatments remain unfunded and financially out of reach for many here. Right now, unless patients are willing to pay for the treatment themselves, find a way to raise the money from family, friends, and their community, or go overseas, these patients have no access to these lifesaving and life-extending treatments.”

We call on the Government to ensure thousands of patients across New Zealand are not let down by this year's Budget.

We are so sad to hear about the death of Sir Colin Giltrap. Together with Lady Jenni, Sir Colin demonstrated extraordinary generosity and care for numerous causes, and at Melanoma New Zealand we feel very grateful and privileged to have had the support of the Giltrap Group over many years. Our thoughts are with Sir Colin’s family, friends and colleagues.❤️

We are deeply saddened to announce the passing of Giltrap Group's beloved founder, Sir Colin Giltrap.

He passed away peacefully at home surrounded by his family last night at the age of 84. Colin was a keen businessman, passionate about cars and building enduring relationships. But above all, his love of motorsport was legendary, and it helped many kiwi drivers become World Champions.

Sir Colin's legacy has touched countless lives and he will continue to inspire us. He will forever be our founder.