Myeloma New Zealand

Myeloma New Zealand Myeloma New Zealand - support, advocacy and education. We welcome your feedback and your thoughts on how we can ensure this organisation achieves its mission.

We want to provide support and information to help them and their families and loved ones to understand the myeloma ‘journey’ from diagnosis to treatment. We want to help them through the milestones they may encounter along the way, and the likely options and choices they may have. But most importantly, we want to help beat this cancer by identifying and supporting strategies and research initiatives that will both improve the quality of life of those living with myeloma and extend their lives. If you or your loved one have been diagnosed with multiple myeloma, we can help you learn about treatment options and point you to services and resources to help you cope with the disease.

Do you remember last year when myeloma patient Toby and his friend Ben ran an amazing 50km to raise money for Myeloma Ne...
03/11/2025

Do you remember last year when myeloma patient Toby and his friend Ben ran an amazing 50km to raise money for Myeloma New Zealand? This year they are doing it again! We're so incredibly grateful and having been inspired by their amazing effort, we are kicking off Move for Myeloma this November.

Move for Myeloma is a way that you can also support Myeloma New Zealand during the month of November, while doing something that is good for all of us - movement. If a 50km run is not quite your thing, you might want to get out for some walks with family or friends, maybe a bike ride or a shorter run. Even trying some chair exercises is a great way to get moving. You might want to do something one off or throughout the month of November.

You can get involved with Move for Myeloma in a couple of ways:
(1) Create your own fundraiser on Give a Little that links direct to Myeloma NZ, explain what movement you'll be doing this November and ask family and friends to donate in support. You can keep people updated on the Give a Little page.

To do this, head to our Give a Little page and click the "Fundraise" button. You then create a page for you which links your fundraising to the Myeloma NZ Give a Little page.

(2) Alternatively, you can donate to Toby and Ben's page which links to Myeloma NZ's, as a way to thank and acknowledge them for their support, and to give back to Myeloma NZ and provide support for our ongoing work.

If you are going to be in Sydney or Hai Phong on Sunday 16 November, you can also head along and support Toby and Ben in person.

Myeloma NZ's Give a Little page: https://givealittle.co.nz/org/myelomanz

Ben and Toby's Give a Little page:
https://givealittle.co.nz/fundraiser/miles-for-myeloma-round-2

Myeloma patients Toby and Nic talk to RNZ about leaving New Zealand to access better treatments overseas https://www.rnz...
21/10/2025

Myeloma patients Toby and Nic talk to RNZ about leaving New Zealand to access better treatments overseas https://www.rnz.co.nz/news/national/576564/aussies-welcoming-to-blood-cancer-patient-who-may-need-drug-unfunded-in-nz

Toby and Nic can now access better treatments that we don't have in New Zealand, so they're sharing their story to advocate for others. Thank you to both of you for doing that.

Toby Fuller who has had chemotherapy and a stem cell transplant may need a drug that isn't funded in New Zealand.

Pharmac recently received an application for belantamab mafodotin, which their Cancer Treatments Advisory Committee (CTA...
11/10/2025

Pharmac recently received an application for belantamab mafodotin, which their Cancer Treatments Advisory Committee (CTAC) is considering next month.

Myeloma NZ has sent a submission to Pharmac about this much needed treatment. A big thank you to the two patients who are on belantamab as part of a trial, for allowing us to tell their story.

You can read this submission and others on our website https://multiplemyeloma.org.nz/submissions/

For updates on the application you can check Pharmac's website https://connect.pharmac.govt.nz/apptracker/s/global-search/Belantamab%20mafodotin

Submissions Submission to Pharmac on belantamab mafodotin Submission to Pharmac on belantamab mafodotin   Download BloodC ancer Alliance June 2024 Letter ‘13 Medicines’ policy – seeking reassurance from Government that commitments to blood cancer patients will not be forgotten. Open letter fr...

03/10/2025

This is the longer interview with myeloma patient Tawhai and his wife Lani.

With the end of September comes the end of  Thank you so much to everyone who has shared their story this month - either...
30/09/2025

With the end of September comes the end of
Thank you so much to everyone who has shared their story this month - either by featuring in our posts, commenting on our posts, or sharing their own posts. Comments on our posts have shown how your stories have really helped others.
A big thank you also to the International Myeloma Foundation - as a member of their Global Myeloma Action Network we've been able to use the IMF graphics creator and pre-prepared posts which have made this month much easier for our MNZ team. Give them a follow if you aren't already following them.

28/09/2025

The Living Well with Myeloma Webinar will include a summary discussion and a Live Q&A, offering attendees an opportunity to address specific concerns. Please join us for this informative session focused on infection prevention and management.

We're almost at the end of Blood Cancer Awareness Month - thank you so much for helping us put the spotlight on myeloma....
28/09/2025

We're almost at the end of Blood Cancer Awareness Month - thank you so much for helping us put the spotlight on myeloma.

Please keep sharing our posts to help others this

The SUCCESSOR-1 trial closes for recruitment in about four months. You can watch a very short video about it and results...
28/09/2025

The SUCCESSOR-1 trial closes for recruitment in about four months. You can watch a very short video about it and results so far here https://www.youtube.com/watch?v=gbi9fHdmxmQ

The trial is Mezigdomide, Bortezomib and Dexamethasone (MEZIVd) versus Pomalidomide, Bortezomib and Dexamethasone (PVd) for patients with relapsed or refractory multiple myeloma.

You can read more about the trial, including the sites, here: https://clinicaltrials.gov/study/NCT05519085

The trial is at three sites in New Zealand (Dunedin, Tauranga and Auckland hospitals) and closes in a couple of months. To be eligible you need to have received between 1 to 3 prior lines of therapy, have had prior lenalidomide exposure and can not have had pomalidomide before.

If you are interested in the trial please ask your haematologist to provide you a referral to the nearest site investigator listed. You contact the listed site yourselves but may need a referral letter. If you search "New Zealand" on page at the link above you'll find the NZ sites but we have screen shotted them below too.

We have asked if BMS (the company that makes the treatment - they also make Revlimid branded lenalidomide) will cover transport costs for those who are not in the areas where the trail is being run. They have said there are no limits set for road travel and in some instances, BMS can cover flights, but these require pre-approval by BMS. So if you are in a different area, you may be able to have transport covered.

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Our Story

Myeloma New Zealand is a new organisation set up to focus specifically on multiple myeloma and to improve the lives of patients affected by it.