metupuk.org.uk - METUPUK

WHO REALLY CARES?

"WHO REALLY CARES?" is our hard hitting campaign for BCAM 2024. A provocative digital and social campaign designed to raise awareness about the devastating impact of MBC. By using a...

About us

METUPUK is the ONLY metastatic breast cancer patient advocacy group in the UK. We are here to push and promote issues with secondary/metastatic breast cancer. Our objectives and strategy focus...

Aims & Objectives

“We are a patient advocacy group aiming to turn metastatic breast cancer (MBC) into a chronic illness and support MBC patients to gain access to the best medicines to prolong...

Red flag #SBCinfographic

Our Founders achievement is the red flag infographics. Created by abcdiagnosis highlighting where secondary disease will return. No one wanted to promote this information with patients. Professionals and...

Jo Taylor

Founder

Her2+ BC Primary 2007 SBC diagnosed 7 yrs later 2014 5 years Perjeta & Herceptin, letrozole, denosumab, prostap 3 monthly injections to give early menopause (surgeries helped get me back into remission & NEAD, neck resection, sternotomy) RT to neck and shoulder SBC in humerus 2020 April SRS to a single brain met June 17/22 metastatic lymph nodes left axilla removed but continuing with same 1st line treatment for the moment.

2nd line (standard) will be Kadcyla 3rd line of treatment and subsequent lines I may not be able to access Herceptin with a chemo - that really worries me. NHS Treatment

Madeleine Meynell

Trustee - Drug approvals NICE/SMC & Interested in drug line & restrictions

Primary HER2+ BC 2015 aged 43. Relapsed with metastatic HER2+ ER- BC in 2017. Mets in lymph nodes, liver, pleura and bones. Progression to brain in 2019 treated with SRS. On first line Herceptin, Perjeta and Zometa. I was born with inherited heart disease, and have an artificial heart valve and pacemaker. This is unrelated to cancer but can complicate treatment choices. NHS patient.

Helen Matthews

Trustee - Science Advisor, research & funding

Diagnosed 2017 ER+ Her2- Primary Breast Cancer (aged 34 & pregnant with my second child)
Treatment: lumpectomy, axillary clearance, EC and paclitaxel chemotherapy, radiotherapy & hormone therapy
Following Oophorectomy (2019), I'm now on anastrozole for 10 years with 6-monthly Zometa
Currently NED, back at work full time as a research scientist and busy looking after my 2 sons.

Emily Lunn

Supporter

HER2+ Diagnosed locally advanced (Primary) in November 2016 Docetaxel Herceptin & Perjeta 12 months Surgery WLE (PCR) Radiotherapy NHS treatment

Miranda Ashitey

Supporter

August 2014 Stage 2 Grade 3 ER+ and HER2+ breast cancer - EC & P chemo, lumpectomy, radiotherapy, herceptin
Feb 2019 rushed to A&E with breathlessness & heart failure. Cancer spread to chest lymph nodes, pleura (lining of lungs), liver and bones. Due fluid accumulating in lungs, had a Pleurodesis.
8 cycles Docetaxel after cycle #2 hospitalised with neutropenic fever treated as neutropenic sepsis.
October 2019 Pneumonia hospitalised for a month.
March 2020 brainmets - fits and due to pressure hospitalised overnight.
March 2020 - 5 sessions of radiotherapy - another fit April 2020 and anti-convulsive medication increased.
Currently on Perjeta, Herceptin, Zoladex and Zometa.
NHS patient

Emma Robertson

Supporter

Diagnosed in February 2013 aged 31 with primary ER/PR+ breast cancer, mixed lobular and ductal. IVF and Chemotherapy followed by multiple exhausting surgeries that failed to get clear margins. Mastectomy with implant reconstruction and then Radiotherapy and Tamoxifen.
Rediagnosed with Metastatic Breast Cancer in my lungs, liver and bones, in February 2015, aged 33. Treated on the NHS with Denosumab, Capecitabine, Paclitaxel, and currently Letrozole with Palbociclib accessed through Pfizer’s free trial in 2017.
I’m living with lymphoedema in my right arm and at some point my implant reconstruction had to be removed because it wasn’t MRI compatible and I needed to be checked for spinal cord compression. Luckily I didn’t have cord compression, just an atypical femur fracture caused by the Denosumab...

Charlotte Kevan

Supporter

Her2+ Denovo 1 week between discussing surgery & scans where discovered tumours in sternum & pelvis Chemo been NEAD since 2 years on Herceptin, perjeta and zolendronic acid Tamoxifen for 6 months Oophorectomy May 2018 and switch to letrozole since. NHS Treatment

Janet Greenwood

Supporter

Grade 3 Oestrogen+ progesterone+. HER2- Mastectomy and axillary clearance De Novo diagnosis (Two weeks after surgery) Metastatic spread to spine, ribs and pelvis Over 2.5 years on letrozole and palbociclib.

NHS Treatment

Madeleine Longhurst

Supporter

Primary Breast Cancer

2023 metastatic breast cancer

Join Us

Dying For A Cure

WHO REALLY CARES?

Darker Side of Pink

About us

Aims & Objectives

Red flag #SBCinfographic

METUPUKs #TrodelvyNow Campaign

METUPUK Mental Health & Social Media Survey

Research & Access to drugs

Darker Side of Pink

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