A Minster dad-of-four diagnosed with stage four bowel cancer which has spread to his liver is now seeking private, possibly overseas, treatment, saying: “I have to live for my wife and kids.”
Kyle Ingram-Baldwin says his ‘world was turned upside down’ when he was diagnosed on October 25 last year after going to A&E with suspected gallstones.
The 40-year-old said: “An ultrasound threw up some indeterminate liver lesions and then I had a CT Scan. I was called into a room three hours later and told ‘you have bowel cancer that’s spread to the liver and will be life limiting.’
“The following two weeks were tests galore, a colonoscopy to confirm a tumour in the bowel and a liver biopsy which both confirmed cancer. I had a meeting with the oncologist on 17th November in which he told me the situation couldn’t be worse.”
Kyle, who works for a national vending wholesaler, started Folfiri chemotherapy – which uses a combination of three drugs – in December but after six cycles a scan showed further progression of the cancer in his liver.
He said: “It was a big shock as I’d been feeling so well. We had a family holiday booked to Wales for a week so thought we’d do that and then come back and tackle this head on.
“Sadly due to my children being unwell the holiday had to be cancelled so I got booked back in for treatment on 25th March. This was a Beacon combo of tablets and infusion, tablets daily and the infusion two weekly. This had been going well. My CEA markers (protein) had dropped from 75-10 which is a promising sign but from mid-May things went downhill.
“I had to have two blood transfusions due to low haemoglobin in my blood and I started to develop ascites, which is a fluid build up in the abdomen and really awful.
“Last Monday I was admitted to hospital for three days due to a suspected infection, however I was sat in A&E for 12 hours and then in a hallway for two days. I ended up discharging myself after very little sleep.
“I met the oncologist on Friday who again was incredibly negative and said ‘nothing seems to be stopping this in its tracks.’
“It has just been an awful whirlwind. There has been zero good news since October, everything has been negative.”
Kyle is not currently receiving any active treatment although he is due to start another chemotherapy regime shortly.
He said: “The main issue with the cancer is the liver. I really need to get that under control and it is quite tricky to deal with. Then we can look at the other stuff, they are not overly worried about the bowel cancer and say the liver is the problem.”
Kyle is still working and trying to keep a sense of normality for his children but says it has been hard.
He said: “The last few weeks have been pretty bad, I have to have regular sit down breaks, I get breathless and I am in a lot of pain. Most of that is due to the bloating, I can’t eat or drink properly. I’m told I can go to A&E or just leave it.
“The symptoms are relentless and it feels like they are saying ‘we are writing you off’ without actually using those exact words.”
Kyle says his older children, aged 12 and nine, have some idea of the situation while the younger two, aged three and 15 months, are too little to understand.
He said: “We are trying to keep as much normality for the children as possible but it’s difficult.”
Kyle and wife Becky are now looking at gaining private care and treatments such as TACE – which specifically targets chemo at the liver – which is available in Germany.
Kyle, who runs the Project Talking Football scheme in Minster alongside Minster FC, says research shows there are treatments available from NHS trusts in other parts of the country and a range of robotic radiotherapy options abroad.
However, the expense is beyond what his family can afford, and so Kyle has created a GoFundMe is a bid to get help from the Thanet community.
Seeking opinions through private care can cost between £250-£600 while the cost of private treatment drugs can be up to £5000 per session. Travelling abroad for treatment can also be a huge cost.
Kyle said: “I need to seek private care for the care I deserve. The GoFundMe has been set up for this to enable second opinions, other treatment avenues and potentially going to Germany for specialist procedures.
“I feel I have been written off medically and I simply cannot let this happen as I have too much to live for.
“I was very reluctant to try this as I don’t see myself as a charity case but I really have no choice. I have to live for my wife and kids. I have to be here for them.”
Find the fundraising page for Kyle by clicking here
Stage 4 bowel cancer means the cancer has spread beyond the bowel to other parts of the body, including the liver. This is also known as advanced or metastatic bowel cancer. It is the most advanced stage of bowel cancer.
NHS treatments can include surgery, chemotherapy, targeted cancer drugs and immunotherapy. Liver metastasis treatment options include using either heat or freezing to try and destroy cancer cells.
Other treatments include TACE – a procedure that delivers chemotherapy directly to the liver tumour via the arteries but this can cost up to 6000Euros per session.
CyberKnife radiosurgery uses precise, non-invasive radiation therapy to target and destroy cancerous tumours and is said to be particularly effective for liver cancer due to its ability to track and adjust to the movement of the liver and tumours.
Every year 41,200 people in the UK are diagnosed with bowel cancer, with 10,000 people (23-26%) diagnosed at stage four.
Bowel Cancer UK is campaigning for stage 4 patients to have a liver specialist involved in their treatment plan to make sure they can access potentially curative treatment.
Find support at: https://www.bowelcanceruk.org.uk/
