Tracy Pratt

Mum, wife, exercise fan, #MBC #BusyLivingWithMets Living with secondary breast cancer but fighting the system #enhertuemergency

[The Times and Sunday Times @thetimes]

A breast cancer drug that could extend the lives of hundreds of women is being withheld from the NHS in an escalation of a pricing row with the pharmaceutical industry ⬇️
https://t.co/PP17xIJibd

[Tracy Pratt @TracyMP1971]

@sophieRblake Thank you @sophieRblake and to all those involved in your tireless hard work and determination xx

[METUPUK @METUPUKorg]

Busy Living with Mets or on our knees waiting for the next treatment line...

The public view of Metastatic Breast Cancer is more important than many realise - especially when it comes to campaigning for access to treatment, better interventions, and even practical matters like benefits and support.

MBC patients are treading a fine line: needing to be “well enough” to be worth funding for extended survival, while also being “ill enough” to justify that spend. But MBC isn’t linear. One day we’re active, the next we’re in bed. One chemo can wipe out days; another allows someone to work through.

Many of you will have heard us talk about the ‘severity modifier’ - especially during our campaign for Enhertu for HER2low. Because MBC doesn’t meet the current ‘high severity’ criteria, treatments can be denied. Too well, and we don’t qualify. Too unwell, and we’re deemed not worth it. A catch-22.

Patients are still contributing to society, parenting, working, campaigning. Yet the median life expectancy is just 2–3 years. That sounds pretty ‘severe’ to us.

#BusyLivingWithMets #Stage4NeedsMore #METUPUK #DrugAccess #MetastaticBreastCancer #SecondaryBreastCancer #PatientVoice

[Breast Cancer Now @BreastCancerNow]

📢 Amazing news! NICE has recommended capivasertib with fulvestrant for use on the NHS in England – offering certain people with HR-positive secondary breast cancer a new targeted treatment option.

https://t.co/WzeVm55uFC

[METUPUK @METUPUKorg]

METUPUK is delighted that the drug combination capivasertib plus fulvestrant has been recommended by NICE for patients with oestrogen receptor positive metastatic breast cancer who:

· have progressed on hormonal treatment

· have one or more PIK3CA, AKT1 or PTEN gene alterations

Capivasertib with fulvestrant is a promising drug combination which can double the length of time patients have before cancer comes back. Capivasertib is also the first drug available to inhibit AKT, a molecule which drives cancer cell growth.

The Institute of Cancer Research in London had a pivotal role in the development of capivasertib. This began with unravelling the role that AKT has in cancer biology, and then working with a UK bioscience company to develop prototype drugs which could inhibit AKT. These drugs were then refined leading to the creation of the final drug capivasertib which has now been made available to patients. The process took around 25 years, beginning in the year 2000.

It is always encouraging to see cancer research leading to drugs which are available to patients. However, capivasertib with fulvestrant is not a cure for metastatic breast cancer. Until the statistic of 31 women dying every day in the UK from metastatic breast cancer is no more, we at METUPUK will carry on advocating for patients.

We urge the SMC to evaluate capivasertib with fulvestrant without delay. In Scotland there are no drugs available which target PIK3CA, AKT1 or PTEN gene alterations. Postcode lotteries are divisive and distressing for patients.

Improved drug access allows us to stay #BusyLivingWithMets and increase our survival outcomes.

We Demand Change.

#drugapproval #DarkerPink #BusyLivingWithMets #IAmThe31 #DyingForACure #MetastaticBreastCancer #severitymodifier #SecondaryBreastCancer #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer

[Dr Liz O'Riordan @Liz_ORiordan]

The SHOCKING Truth about Turmeric and Breast Cancer https://t.co/HeE2rNZDnd via @YouTube

[Sophie Blake @sophieRblake]

“Your mummy loves you forever fund” 🩷
This is beautiful Hannah, my fellow Enhertu campaigner and an amazing woman, who has Stage 4 incurable cancer.
Her dying wish is that her 4 year old daughter Lilah, who has complex needs, can be taken care of.
Please support this GoFundMe by donating or sharing – every bit of help makes a difference
Thank you 🩷
https://t.co/Y12PRzqyuB

[Sophie Blake @sophieRblake]

For Lilah 🩷 Please share and donate if you can X https://t.co/o2G49gx1Oa

[Tracy Pratt @TracyMP1971]

@Make2ndsCount I’m on the BLUESTAR trial run by @AstraZeneca at the nothing to do with having limited options but all to do with it being the right time in my treatment journey

[Tracy Pratt @TracyMP1971]

@abcdiagnosis Totally agree @abcdiagnosis

[Make 2nds Count @Make2ndsCount]

Secondary breast cancer (SBC) can be referred to in a number of ways, which can be confusing. They all mean the same.

SBC is a cancer that has spread beyond the breast to other parts of the body. Find out more & how we support those living with it: https://t.co/DNx5n1yQ07

[Tracy Pratt @TracyMP1971]

@sophieRblake I’ve used them ever since my secondary diagnosis too and they have always given me a great quote

[Tracy Pratt @TracyMP1971]

@sophieRblake It so very sad @sophieRblake 💔

[Emma Walters (she/her) @emmawalters28]

Today is Rare Disease Day. Those who know me understand Joshua has an ultra rare genetic mutation in ATP1A3. Today was a day to feel the sun on my face and take a breath. We live with uncertainty every day and this takes on a huge toll on us as a family. #RareDiseaseDay

[Tracy Pratt @TracyMP1971]

@emmawalters28 A beautiful day to take a breath and reflect. You are an amazing family and Josh has flourished in the way he has because of you all xx

[Tracy Pratt @TracyMP1971]

@charliersmith1 Love the photo. You look so happy xx

[Tracy Pratt @TracyMP1971]

@METUPUKorg Thank you for all your work on this important issue. Robust data should be driving decisions re treatment pathways etc
Can we find out from @NAoMe_news which Trusts are contributing to this data?

[Tracy Pratt @TracyMP1971]

@METUPUKorg My oncologist discussed biopsy at my MBC diagnosis and both times I’ve had progression but for different reasons it hasn’t been able to happen so we are working on the assumption that my type remains HR+ HER2low. I have been checked for mutations though

[Tracy Pratt @TracyMP1971]

@deathpod_ @KathyBurke Oh no….love @KathyBurke #WTAWTAW

[Tracy Pratt @TracyMP1971]

Had a great time last night watching @BillBailey on the last night of his show with @GaryPratt44 Lovely tribute to the great Sean Lock ❤️