SpinalNikki

Mum of 2, Medically retired Neonatal nurse. Metastatic breast cancer. F2BH Trustee.
My motto Live, Love, Laugh. 🌸🏴󠁧󠁢󠁷󠁬󠁳󠁿💛
All views are my own. 💛

[SpinalNikki @nikkiwilliams73]

Quick intro. Living my best life with Secondary breast cancer. Diagnosed 2021 after Primary diagnosis 2017. Incurable but treatable. Cancer may have taken away my career, my future and financial stability, but it's also given me a fight, Fighting to be Heard! Raising awareness!!!

[SpinalNikki @nikkiwilliams73]

Check out OWCH on tik tok now!!!! Great savings!!!!!!!
#facialoil #tiktokshop #GreenFriday #polyphenols

[SpinalNikki @nikkiwilliams73]

Don't miss out. https://t.co/bjNLse4Dgc

[SpinalNikki @nikkiwilliams73]

Don't miss out. https://t.co/bjNLse4Dgc

[Warrington Borough Council @WarringtonBC]

⚠️ Scam alert ⚠️

We've been informed of 2 text message scams circulating. One relates to “cost of living payments,” and another to a “UK Home Office notification.”

if you receive a message like these do not click the link as it’s a scam.

[Ricky Gervais @rickygervais]

26 years ago, I was made redundant and given a few grand. I decided that if I was careful, I could live off the money for 6 months trying to become a comedian before I had to get another job. I was 37. Worth a punt.

[METUPUK @METUPUKorg]

Mum of two Claire was diagnosed with Metastatic Breast Cancer in 2020, three years after treatment for primary breast cancer. She offers up her advice to other MBC patients including how it's essential to be your own advocate.

Read Claire's blog here https://t.co/MSEa9OPNTJ

#WhoReallyCares #BreastCancerAwarenessMonth #BCAM #costofliving #severitymodifier #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancerAwareness #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer

https://t.co/juy9Y4NUCm

[SpinalNikki @nikkiwilliams73]

Just 1 day in the whole of October…….. are we not worth it???? Why do we always have to Fight to have our voices heard?

#3yearson7gone

[METUPUK @METUPUKorg]

It’s metastatic breast cancer day.

The only day in the whole month of October for Breast Cancer Awareness Month that we have any focus on MBC.
It’s not pink and fluffy.

By the end of the month 11500 people will have died from this awful disease.
We don’t even know how many people are living with MBC.
That’s how little our lives are valued….

We deserve better and that’s what METUPUK strive for with our campaigning.

Please follow us, share our social media posts and help us to create the necessary awareness.

We need to ensure we are visible and not breast cancer's dirty little secret. We must be seen and made a priority to policy makers and the government.

#WhoReallyCares #BreastCancerAwarenessMonth #BCAM #costofliving #severitymodifier #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancerAwareness #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer #SBCDay #MBCDay #secondarybreastcancerday #metastaticbreastcancerday

[SpinalNikki @nikkiwilliams73]

@Donna_Scully 😢💔💔💔

[SpinalNikki @nikkiwilliams73]

#3yearson7gone

[Fighting to be Heard @F2bHcampaign]

Kate Died 46. Diagnosed at 39 with estrogen-receptive breast cancer with no known risk factors. Breast Cancer spread to her liver. Kate’s final tweet reached up to 1.6 billion people. We carry on this fight with her at the heart of all we do. #teacherwithcancer #3yearson7gone

[SpinalNikki @nikkiwilliams73]

#3yearson7gone

[Fighting to be Heard @F2bHcampaign]

Gill Cory, Died Age 60, Married to Alan. Devoted Mum & Grandma to Rachel, Jonathan, Leo & Mabel. Diagnosed in 2019. It traveled into her bones, skull, Jaw, and other areas. Gills suffered horrendous Neuropathy. Co-founder & treasurer of our charity. #3yearson7aregone

[SpinalNikki @nikkiwilliams73]

#3yearson7gone

[Fighting to be Heard @F2bHcampaign]

Sally. Passed at 46, Married to Steve, boys James 21 & Joe 19. Sally was diagnosed triple-negative breast cancer in 2019; then, it returned after chemotherapy, radiotherapy & breast removal 18 months later. Sally's priority was a 'fight to be heard' for change #3yearson7aregone

[Fighting to be Heard @F2bHcampaign]

Vicki, Died age 32, Family: Partner of Gavin Flower. Children Grayson, aged 12 & Rey, aged 4. Vicki was diagnosed with triple-negative breast cancer in 2018 & a secondary diagnosis in 2020. It travelled to the lung & then moved into the brain #3yearson7aregone #3yearson7gone

[Fighting to be Heard @F2bHcampaign]

Cathy, Died Age: 57, Married to Sean, Mother and stepmum to 4, Grandma to 2. She was diagnosed with Secondary Breast Cancer that metastasized to the Liver in February 2021 after finding a lump in her armpit.
#3YEARSON7AREGONE #secondarybreastcancerday

[Fighting to be Heard @F2bHcampaign]

Suzanne
Died Age: 41
Married to John, Devoted daughter of Tommy & Geraldine, Step-mum to Keiran. Diagnosed at 38 with Metastatic breast cancer. Fighting to be heard meant so much to her; she stood shoulder-to-shoulder with her girls to make a difference #3yearson7aregone

[(((Joanne Harding))) @Joanne13Harding]

Today is Secondary Breast Cancer Day- remembering this amazing woman- all she achieved in raising awareness and supporting other women & families dealing with SBC. She was one of @F2bHcampaign
founders and an absolute force of nature ❤️
@kate_rackham

[Fighting to be Heard @F2bHcampaign]

Emily Roberts, Died aged 30, Mum of Three beautiful girls.
Secondary Breast Cancer travelled to her Brain.
No top-to-toe scan was not done.
Emily passed away with a Bleed on the Brain.

#3yearson7aregone #secondarybreastcancerday

[Fighting to be Heard @F2bHcampaign]

On #SecondaryBreastCancerDay, we honour the memory of our founders, Kate (#teacherwithcancer) and Gill, who both tragically passed this year. In the past 3 years, we’ve lost 7 incredible women from the image an overwhelming reality of this disease & devastation
#3YearsOn7AreGone

[SpinalNikki @nikkiwilliams73]

Got to love this girl!!!! Bloody brilliant!
@Lin_Manuel @HamiltonMusical

Check out :) :)'s video! #TikTok https://t.co/U3EDxMQlOc

[METUPUK @METUPUKorg]

October is #BreastCancerAwarenessMonth. Every month is Metastatic Breast Cancer awareness month for us as We Are Breast Cancer. Not a secret group in the corner to be hidden away. Join us this month to hear personal stories from MBC patients and the challenges we face every day with our campaign

Week 1 is about Awareness of metastatic breast cancer which focuses back to the first of our key aims, so you will hear the stories from our volunteers who have something to say on this #WhoReallyCares

#BreastCancerAwarenessMonth #BCAM #costofliving #severitymodifier #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancerAwareness #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer

[SpinalNikki @nikkiwilliams73]

Another possible treatment line rejected! Is my life not worth anything? @NHSEngland @NICEComms
#secondarybreastcancer #metupuk #fightingtobeheard

[METUPUK @METUPUKorg]

The drug elacestrant (Korserdu, Menarini Stemline) has not been recommended by NICE for the treatment of post menopausal women, and men, with estrogen receptor (ER)-positive, HER2-negative metastatic breast cancer (MBC) with an ESR1 mutation who have disease progression following at least one line of hormonal therapy including a CDK 4/6 inhibitor.

The decision was made because there remains uncertainty about the evidence presented by the company. NICE have asked for these outstanding issues to be addressed and there will be a second meeting held at a later date. A public consultation has opened up which closes on 22 October 2024 https://t.co/364oWjBtVM.

Elacestrant is a selective estrogen receptor degrader and is in the same class of drugs as fulvestrant. However, while fulvestrant is administered as an intramuscular injection in the buttocks, elacestrant is a tablet treatment taken at home. It is also the first treatment which is directed at cancer with an ESR1 mutation. Testing for ESR1 mutations is carried out using a ct-DNA blood biopsy. This involves taking a blood test and testing it for circulating tumour DNA. Ct-DNA tests enable invasive tissue biopsies to be avoided. Most patients are also pleased to avoid injections in the buttocks, making elacestrant a patient-friendly treatment.

Patient expert Kirstin Spencer has an ESR1 mutation and commented: “Elacestrant is the first treatment directed to ESR1 mutations. Not all ESR1 mutations are equal, my cancer carries the ESR1 Y537S mutation which can be particularly difficult to treat. I am hopeful that elacestrant will be an option for me in the future. The ultimate goal of treatment for patients is to extend time with loved ones, balanced with a quality of that time.”

We understand that many patients will be distressed by news of another MBC drug not being recommended, coming after straight after the Enhertu for HER2-low MBC decision and the NICE Board Meeting decision to not change the severity modifier.

We are hopeful that the outstanding issues will be resolved and elacestrant will be made available to NHS patients in England, and eventually in Wales and Northern Ireland.

[SpinalNikki @nikkiwilliams73]

I miss them 😢💔💔
#3yearson7gone
#fightingtobeheard
#secondarybreastcancer

[Fighting to be Heard @F2bHcampaign]

Seven months on, both are gone. It was March 1st, 2024, exactly seven months to the day since Fighting to be Heard attended the Trinity Logistics' event in Liverpool. Our founders, Kate Rackham & Gill Cory, were there that day. 💔 #3yearson7gone
#FightingToBeHeard