PART 6: A Letter to the Chief Exec

You will remember from reading Part 5 of our story, that Sheila had wanted to try for another two cycles of Oxaliplatin, but in the event, the neuropathy from the sixth round of chemotherapy didn’t disappear before the seventh round was due, so we all decided that 6 cycles of Oxaliplatin was enough for Sheila after all.

With regards to the 5-FU, even though we had reached a deal with Sheila’s oncologist that had given him a way out from recognising our result that showed he was over-dosing her, something just didn’t feel right about the accommodation we had reached with him. We shouldn’t have to avoid the issue and do a deal with him; he should be providing dose monitoring and adjustment as part of the chemo he was giving Sheila. This just wasn’t right.

Thinking it over, I realised that perhaps I was aiming my concerns at the wrong audience. Maybe clinical oncologists don’t have the authority to change what they do, even if they wanted to. I decided to take the issue away from the front line clinicians and I wrote to the Hospital Trust’s Chief Executive, bringing the matter to his attention and asking him why, based on plentiful good evidence, dose monitoring and adjustment is not being carried out routinely, what he thought others might say, if they knew and challenging him to make TDM routine. It was a long letter, which you can read below:

The Chief Exec handed the matter to his PALS Team Manager to handle on his behalf.

Meanwhile, Sheila never got the chance to have her dose of 5-FU reduced because over the New Year, this year, she had three episodes of angina-like pain and was taken off 5-FU as a consequence. Angina-like pain is a known but uncommon side effect of 5-FU and if severe enough, can lead to a full blown heart attack and death! On 2nd Jan this year we both ended up in our local hospital’s Emergency Department, whilst they checked Sheila over properly. Thankfully, nothing was found, but we didn’t get home until the middle of the night and I didn’t get back to work the next day after the holiday season!

At this point, I took the opportunity to write to the PALS Manager at the Christie with some additional information that I had learnt since writing my first letter and also expressing my concern that Sheila’s angina-like episodes may have been brought about or exacerbated by being over-dosed with 5-FU. The information that I had learnt was that recently, the International Association of Therapeutic Drug Monitoring and Clinical Toxicology has strongly recommended Therapeutic Dose Monitoring for the management of 5-FU therapy in patients with colorectal or head-and-neck cancer receiving common 5-FU regimens and I thought it was important that they considered that in their response to my original letter. You can read that letter below:

When we next saw Sheila’s oncologist, he already knew of her episodes of angina-like pain, as I would have expected and he offered to stop her chemotherapy altogether or swap her on to Raltitrexed, which I had identified in my letter to the PALS Manager above, even though it is not licensed in the UK in Sheila’s circumstances - I wonder if that was coincidental? Sheila chose two cycles of Raltitrexed to complete her full course of chemotherapy, as I knew she would; she’s a trooper!

Her oncologist also ordered up an echocardiogram for her, to check there had been no damage done to her heart and thankfully, there hadn’t been.

Follow this blog next week, to find out what The Chief Exec had to say in answer to my letters.