Asha's Fund

Hello Darlings, it's Asha here.

I never thought I would have to do this but here I am.

Stenny and I are starting this fundraiser to give me access to medications that I'm currently not eligible for on the NHS (National Health Service) in the UK because of strict rules about which patients can have access to certain drugs, for Stage 4 Breast Cancer.

I was first diagnosed with Breast Cancer in 2010 and after surgery, chemotherapy and radiotherapy, I was told I was in remission.

In 2015 I woke up with pain in my chest and after a shadow was seen on the lung X-ray I was diagnosed with Stage 4 breast cancer (Secondary Breast Cancer) with spread to the bones and lungs.

Needless to say, our world fell apart but we were determined to make to most out of life and our marriage, which we have done and continue to do.

The median survival for patients with Stage 4 Breast Cancer is three years. There is no cure and Stenny and I live from scan to scan in three-month blocks. I’m now eight years in and my survival is dependent on more drugs being accessible to me.

In 2022, things progressed rapidly in the liver and scalp and I went through two lines of treatment. Because I was unable to work, we used up a lot of our savings and I had used up all available sick leave pay. Stenny quickly became my carer and had to put his work on hold.

A liver biopsy showed that the Tumour has a specific mutation called PIKC3A. My oncologist wants me to have the targeted drug specific to this mutation and has gone to my local Health Board to request funding for it.

However, I have been turned down because I do not fit the criteria for which the drug has been approved by NICE (National Institute for Health and Care Excellence). In short, I’ve had too many lines of treatment.

There are other chemotherapy drugs I could have but doesn’t it make sense to have the specific drug that will target the specific mutation the cancer is expressing? My oncologist certainly thinks so.

So here we are in Feb 2023 and I’ve been off any kind of systemic treatment since Dec 2022 as days before Christmas we found out that things had spread further in the brain and I needed to start radiotherapy ASAP. In the meantime my oncologist, is exploring all avenues to try and get this specific drug.

Stenny and I are looking at various options and how we can get access to this specific drug and other treatments outside of the National Health Service both in UK and abroad.

I cannot describe the emotions and pain Stenny and I have had to endure.

Cancer takes away so much, however, we will continue to hold on to the positive.

Life itself is the greatest blessing we know and we will continue to make every moment count and keep smiling and living.

Any contribution will go a long way to help us.

Please know that any funds raised will be used solely for medical treatments and any extra will be donated to the charity that I advocate for: www.metupuk.org.uk

This is the only charity in the UK that advocates for Stage 4 Breast Cancer patients, campaigning for awareness of red flag signs and symptoms, access to drugs and treatments, access to clinical trials, and pushing policy to change for the better.

For this, we are grateful.

We will post updates.

If you have any questions please ask us directly and not bombard our families.

Love Asha and Stenny