When I first started volunteering with METUPUK, I wasn’t really sure what I would do. For a few months, I sat on the sides to get a feel for the organisation. I shared METUPUK links on social media, but I don’t have much of a social media presence, and Instagram is a bit of a mystery to me. I’ve never figured out how to do makeup, plus my hair is a non-event after chemo. I thought I wanted to help with drug access or access to clinical trials, but I was flexible and wanted to see what was needed.
Nick’s fundraising 310 mile bike ride
Last year Nick rode 310 miles through Wales to raise money for MetUpUK.
You can follow his whole journey and find out more about why he wanted to do the ride in the first place in this video.
Why we need MBC research more than ever
At METUPUK, we dream of the day when metastatic breast cancer (MBC) is downgraded from an incurable to a chronic illness. The only way this will be possible is through new scientific research. We urgently need more research into this deadly disease.
We need more clinical research into MBC, including clinical trials. These are crucial for determining which are the most effective treatment options and for bringing new drug treatments to patients.
What does METUPUK do?
METUPUK is now 5 years old.
In those 5 years there haven’t been many changes in our plans from what we set out to do, but we have achieved so much! And we are now a registered charity!
Our strategy, aims and objectives are the same as when we started, we knew what direction we were going in but we are now looking to demand more action and accountability for patients.
Trodelvy Now! Rejected by NICE on cost grounds
Today, MBC patients got the devastating news that NICE has decided not to fund sacituzumab govitecan (Trodelvy) at the current price. This news affects Triple Negative MBC patients in particular, as the drug has been shown to have excellent results in this patient population.
Trodelvy is approved by the Scottish Medicines Consortium (SMC) for Metastatic Triple Negative Breast Cancer for use by NHS Scotland
METUPUK welcomes the Scottish Medicines Consortium (SMC) acceptance of Trodelvy® (sacituzumab govitecan) for use within NHSScotland.
Trodelvy is an innovative drug which has been accepted for the treatment metastatic triple-negative breast cancer (mTNBC) within NHSScotland. Metastatic triple-negative breast cancer is a challenging disease to treat, and an even more devastating disease to live with.
Tucatinib is approved by NICE for HER2+ metastatic breast cancer
METUPUK welcome the National Institute of Clinical Excellence (NICE) decision to accept Tucatinib with trastuzumab and capecitabine for treating HER2-positive unresectable locally advanced or metastatic breast cancer after 2 or more anti-HER2 therapies for routine commissioning use in NHS in England and Wales.
Why did Jo Taylor our Founder create the infographics?
Before I was diagnosed with metastatic breast cancer (also called secondary / advanced / stage 4 breast cancer) I was aware that there was a huge lack of awareness of
METUPUK are delighted by the Scottish Medicines Consortium (SMC) approval of two new drugs for metastatic breast cancer for use by NHS Scotland
The Scottish Medicines Consortium (SMC) has approved today:
Trastuzumab deruxtecan (Enhertu) for treating HER2-positive unresectable or metastatic breast cancer in adults who have received two or more prior anti-HER2 based therapies for routine use on the NHS in Scotland.
Tucatinib (Tukysa) with trastuzumab and capecitabine for treating HER2-positive unresectable locally advanced or metastatic breast cancer after two or more anti-HER2 therapies for routine use on the NHS in Scotland.
About brain metastases
To follow on from yesterday’s post about the death of Leila, I would like to highlight some information about brain metastases and just a quick look on google provided this information.