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BIKER BRIAN'S CANCER FUND

£89,535 of £25,000 goal

Raised by 601 people in 7 months
Created November 2, 2018

My name is Brian Farrell and I live in South Wales, with my wife Nicola and our three children, Conor 12, Calum 10 and Erin 10
.

At 40 years old, I was diagnosed with Pancreatic Cancer which has now spread to my liver.  I need to raise money to allow me to have my tumour genetically profiled, which may then allow me to find life-extending targeted cancer drugs that are not yet available on the NHS UK.
 

Prior to this, I was an active guy.  I was working as a mechanical fitter and enjoying family life. 

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In November 2016, at the age of 39, I found myself in agony with abdominal pains, which did not seem normal.  I was rushed into A&E, whereby from routine blood tests, they diagnosed me with Pancreatitis.  What unfolded in the next few days was life changing. 
From x-rays, ultrasounds and CT’s, they confirmed there was a tumour on my pancreas.  However, at this point, we did not know if the tumour was benign or malignant.
On the 1st December 2016, I had a biopsy which would confirm either way.  Devastatingly, on Christmas week, we found out that the 4.5cm tumour was malignant (cancerous), and I had a rare form called Acinar Cell Carcinoma (ACC).  This only accounts for 1% of all Pancreatic Cancers, but the survival rate was still brutal.

On 6th January 2017, I had surgery to partially remove my pancreas (PPPD).  After 11 hours of surgery and 18 days in hospital, I made it home to recover. 
The good news following that was the histology confirmed clear margins and no lymph nodes were affected.  However, my Oncologist advised 6 months of 3-weekly infusions of two types of Chemotherapy once my scars had healed, this commenced March 1st to September 2017. 
It was a tough regime for the 1st 3 months, and then further trauma happened in July with a burst appendix which required emergency surgery.  Another scar to heal before chemo could continue, but I did and finished 6 cycles by the end of August.

I thought this was the last chemo infusion!                                                   

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At the end of September, it was scan time and my oncologist gave us the news we had been waiting for… CLEAR SCAN, no sign of Cancer.  We were delighted, relieved and finally thought we could get on with our lives.

We had a relaxing Christmas, but as scans were every 3 months, the worry was never too far away. 

The next scan was due December, but got delayed until the 31st of January.  On 5th February, my oncologist informed me that there was activity on my liver and he would like to send me for an MRI to further investigate.  This was the most anxious time, waiting for a date, looking for a private scan.  On the 10th February, the MRI confirmed that this activity was indeed cancerous and I now had secondary (i.e., incurable) cancer…. Our world, our family, everything had changed forever.

We soon discovered that the prognosis of advanced or metastatic pancreatic cancer is poor, with a median overall survival between 6.8 and 11 months.

But being the positive person I am, we decided to follow the advice of the oncologist and start another regime of 6-months of two types of chemotherapy, starting immediately.  This was a brutal combination of exhaustion, nausea, sickness, diarrhoea and then hair loss all set in for this bumpy ride.

But this chemotherapy is so toxic that even if it seems to be working it is not sustainable longer term, as my body’s immune system will eventually fail or the tumour will become tolerant to it.

We have now researched Genetic Tumour Profiling.  This gives a comprehensive view of the tumour profile, at both DNA and protein levels and opens more therapeutic options, supporting my oncologist and follow-up decisions.  This is currently not funded by NHS UK for my case, unless I am accepted for a clinical trial.

If a mutation is found, then a targeted therapy could be sourced outside of the UK.  I would also need to source a private hospital (again outside of UK) to administer any targeted drugs.

THIS IS NOW URGENT AS MY TUMOURS ARE GROWING AGGRESSIVELY

Potential Cost:
Very difficult to estimate at this stage, but will include, Tumour profiling, UK Clinic, Non UK Private Hospital Admission, Consultants fee’s, Targeted drugs, Flights/Accommodation.

* Tumour Profiling: approx. £2,600
* Chemotherapy: Pharmaceutical licencing directs    Oncologist’s which drug to use as a first or second line treatment.  Regardless if the order of usage is not appropriate to the type of cancer.  Therefore, if their regime is not followed, I will not be entitled to go back to free alternative chemo drugs, even if they work!
* Alternative treatments in a UK or other country's Private Cancer Clinic: approx. £4500-£6000/ week, including initial consultation and treatment plan

In the event that I manage to secure the right clinical trial, or the funding is not required, a percentage of it will be donated to Pancreatic Cancer UK, Morriston Hospital Pancreatic Ward, Singleton Hospital Chemotherapy unit and Ward 12 and a small percentage to be retained as security for our children.

This has been a truly traumatic time for us and our family, but we know need to keep the motivation going and raise funds to allow more testing to be done to seek a targeted drug that will keep the tumour from growing or spreading.  This could provide me with extra years with my 3 children and family.


Fundraising begins:

My son’s friend has admirably had an idea to do a bike ride to launch fund raising, which is brilliant!  He know’s Brian’s love for all Bikes.

This is Bike for Brian on the 4th November from Briton Ferry to Mumbles and back.

If you could spare any amount of money – however small – or if you would like to get involved in fundraising, my family and I would be extremely grateful.

Please pass this message as wide and as far as you possibly can to bring awareness and support to this cruel disease.

We will update this site as often as is needed to keep everyone up to date on my progress.  Thank you for taking time to read my story, for your kind messages and thoughts and prayers.

Brian, Nicola, Conor, Erin and Calum  Xxxxx
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Update 7:

Scan results are in………!
Mixed result again with largest liver tumour reducing and the smaller two remained the same, which was good news. But unfortunately, the 2 new spots have now shown themselves on CT as well as MRI.
The downside was still the mention of 3 speckles on Brian’s lung which is still unknown if cancerous, so he continues with chemo regime.

Next scan will be a full body PET (Positron Emission Tomography) which should give a clearer result.

In the run up to scan, Brian felt like some time out so we booked a weekend away to Isle of Man and I got to watch my first TT Bike race! Think I’ve got the TT bug so hopefully will be going next year.

Brian’s next appointment is to look at a trial drug in Manchester hospital, then PET scan in Cardiff. If all clear on lungs, the possibility of liver surgery.

Thanks again for all your continued support
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Updated photo!!
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A welcome surprise visit from 4 Ospreys Rugby players at the chemo unit, including Wales captain Alan Wyn Jones, which was a lovely boost to all patients.

April’s scansxiety was extremely high, as we knew any progression would mean NHS stopping chemo. It was a mixed response with the largest liver tumour reducing and the smaller two remained the same, which was great news. Plus no sightings on CT of additional three spotted on MRI, so fingers crossed they will never progress. The downside was a mention of a speckle on Brian’s lung which is unknown at this point, so he continues with chemo until next scan.

No decision can be made on surgery or radiation until lung speckle can be confirmed as not being cancerous.

Thank-you all again for your support, the funding is ready and waiting for if/when private surgery and/or targeted drugs are needed.
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Update 5:

Following a stable scan in February, March has been a month of ups and downs.

At the end of February, a fantastic charity called “Kicking Off Against Cancer” (KOAC), sent us on a family weekend break to London to make memories. This was a wonderful donation and we had an amazing family weekend. Something we wouldn’t have done without this charity. They arranged everything from transport, accommodation and our sightseeing activities. Brian was fighting off an infection, and I was worried about him going, but he was determined not to miss it.

Unfortunately, during March Brian felt unwell again but this time had to be admitted to Hospital, where he was put on IV antibiotics and fluids. He’s recovering ok, but stabilising his weight is still a concern as his body is not retaining nutrients.
To add to our worry, an MRI scan has showed 3 additional tumours on his liver. We don’t know when they appeared as the CT scan has not picked this up. But this could impede the decision to have a Liver resection.

The next CT scan will determine the next 3 months. We are praying for a stable scan, which will enable Brian to stay on current chemotherapy or allow the Surgical team to decide on Liver surgery or SIRT (Selective Internal Radiation Therapy).
If the results are not positive, the NHS will stop chemotherapy and surgery with NHS will be very unlikely. We will then need to source a private consultant to evaluate surgery or obtain the drugs identified in Brian’s profiling. There is limited experience in using these drugs as they are not mainstream treatments, so we will all be entering the unknown.
Brian is trying to remain positive and continuing with all his alternative methods of healing, including nutrition, supplements and meditation. He’s also started acupuncture to help with nausea and fatigue.

We are still looking at clinical trial opportunities in the UK, Europe and US

Thank-you all for your continued support. Please keep praying and believing he will get better.
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£89,535 of £25,000 goal

Raised by 601 people in 7 months
Created November 2, 2018
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£25
Anonymous
4 days ago
RD
£10
Rob Dunphy
18 days ago
MP
£20
Margaret Powning
1 month ago
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£172
Mr & Mrs Tim Carey
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Mr Frank Keegan
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Evie Gill
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£90
Rehoboth Chapel
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£10
Rob Dunphy
3 months ago
BG
£1,680
Briton Ferry Charity Night, organised by Adrian Gregory
4 months ago (Offline Donation)
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