Help Kit fight metastatic stage 4 breast cancer
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Please can you HELP? After careful consideration we have decided to reach out to our network of friends, family and the public to help Karen get access to potentially life extending medication that is not currently available through the NHS.
In recent weeks Karen’s quality of life has deteriorated meaningfully. Pain is becoming more unmanageable and she has also suffered a very serious seizure resulting in more hospitalisation further delaying treatment.
Treatment options are limited at this stage. ENHERTU which is not currently available via the NHS is potentially looking like the best possible option at this stage however costs c.£9k-£11k treatment cycle ( i.e every 3 weeks)
Karen (Kit) is a wife, daughter, sister, auntie, niece, cousin & friend who we love dearly and want to spend as much time with as possible.
Karen’s and our lives were forever changed when she was diagnosed with breast cancer on the 23rd February 2019, a week after discovering a lump in her breast after wedding dress shopping. Karen was diagnosed with triple negative breast cancer, an aggressive and notoriously difficult to treat cancer typically occurring more in young women and black women. This rare form of breast cancer doesn’t respond to hormone treatments and more likely to spread to vital organs like the liver and brain. It has the shortest life expectancy of any form of breast cancer.
Traditionally, there have been very few treatments for Triple Negative Breast Cancer. Treatment usually involves indefinite chemotherapy. As well as being brutal, this stops working quickly - each form of chemotherapy only works for a maximum of six months.
Karen’s Background:
I am originally from Cork city, Ireland and am a past pupil of St Vincent’s Convent Primary and Secondary school. I studied psychology in University College Cork and completed a doctorate in Clinical psychology in London. I am married to the wonderful Damian and have a beautiful canine companion, a poochon named Murphy.
Following initial diagnosis I went through the following:
-8 rounds of IV chemotherapy
-medical induced menopause
-got married!
-lumpectomy and lymph node clearance surgery with breast reconstruction
-20 sessions of radiotherapy
The pathology results from the removed tissue revealed I had a partial response to the treatment. This news hit hard as meant I was a higher risk if relapsing and developing secondary breast cancer. The clinical team put me back on chemotherapy, this time in tablet form. January 2020 I started oral chemotherapy.
During the pandemic, I decided to stay on treatment agreeing to strictly shield at home to reduce the chances of testing positive for Covid. I remained on chemotherapy and my drugs were posted to me so to avoid any contact with the hospital. My reviews with my consultants happened over the phone.
CT Scans were delayed due to the pandemic and unfortunately when they did happen I was told the cancer had spread to my lung. My world came crushing down around me to be confirmed as now having stage 4/secondary Breast cancer diagnosis.
I was rushed in for emergency thoracic surgery on the 2nd July 2020 where 8cm of my lung was removed. This whole experience was traumatic being left at the hospital door by your husband to have to then be in hospital alone to face the most frightening of operations. July to sept I was focused on recovery from the operation and for a brief while I felt well.
In late September I took a turn for the worst. My breathing became laboured and I had pain in my ribs. Another scan revealed I had a major pleural effusion, fluid build up in my lung cavity which was squashing my lung and making it difficult to breath. I could barely walk. This meant the cancer was still active. Over a week alone in hospital attempts were made to drain the fluid, 2.5L was drained on one go but it immediately filled back up. Again I had to undergo emergency surgery. During the operation they managed to drain the fluid, reinflate my lung, take biopsy’s of my pleura and coat my pleural space with a form of surgical talc so to my lung would stick and fluid would be prevented from building up. This was the toughest operation to date. It’s a harrowing account now to see it written down but all I can say is how incredibly grateful I am to the surgeons, doctors and nurses who cared for me during all of these operations and stays in hospital. This was a time I was at my most vulnerable and scared. Healthcare staff held my hand when my husband couldn’t.
Since then I have had further 4 treatment lines as cancer has spread throughout my body:
-Abraxane and immunotherapy-failed after 3 cycles
-Gemcarbo-completed 8 cycles
-Trodelvy-completed 11 cycles before cancer progression
-Eribulin-failed after 3 cycles
Luckily, the last few years have seen a push and interest from some of the worlds most pioneering scientists in drug development for Triple Negative Breast Cancer. Trodelvy was on of these drugs and the only one I have managed to be on for a sustained period of time. A new drug has now become available called ENHERTU.
ENHERTU
ENHERTU is only available privately in the UK. If Karen lived in the USA the targeted drug ENHERTU would be an option for her as she has recently discovered through biopsy she is classified as low HER 2, a new category for TNBC patients.
Read more here:
The drug is not yet available for patients on the NHS but this may be her best chance to control the cancer and therefore her need has become urgent. At present it comes in at approx £9000 a cycle (every 3 weeks) privately. If the initial cycles prove successful then the cost of continuing this treatment is going to be enormous and real struggle for us to finance not to mention an additional major source of stress.
This is why we need help now. Karen and Damian need to focus solely on her well being. Getting access to ENHERTU would be a lifeline of hope and give Karen the best chance possible at restoring some of her quality of life and happiness. In addition Karen vows to continue to campaign for compassionate and early access for ENHERTU for all on the NHS.
All funds raised with this appeal will be used specifically for access to life saving treatment. In the event that all of the funds are not used the residual will be donated to Bart’s Cancer Research who have been phenomenal in caring for Karen and are at the epicentre of cutting edge research into rare cancers.
Please note: if you’re in the UK a Gofundme donation is eligible for GiftAid - please tick the GiftAid box as it’s a big help. If you’re in the US or Australia a Gofundme donation is tax deductible so keep your receipt.
Thank you everyone for all your help and support.
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Fundraising team (2)
Karen Walsh
Organiser
England
Damian Hill
Team member
