An Evidence Base in Support of the Need for Improved Clinical Practice in the Administration of 5-FU Chemotherapy Regimens

Some time ago, I said I would tell you all why I think what I do about the way 5-FU chemotherapy is given and why I think it is so wrong.

 It has taken a while for me to compile all the evidence I have found to support what I think, into one place, because there is a lot of it.

 It's a long spreadsheet, but I have extracted the key points from each paper I have found and read. I have highlighted the important parts of those key points, to make it as easy as possible for you to understand what so many people are saying - over and over again.

 The simple and clear messages are easy to understand - BSA dosing used on its own, as it is, is not rational and has no clinical rigour behind it, Therapeutic Drug Monitoring (TDM) has been shown time and time again, to improve patient outcomes, whilst minimising toxicity as far as is possible and there are cost effective methods and equipment available to provide TDM for everyone.

 Oncologists may tell you that BSA dosing is all they've got, or TDM is not what they do, or they have guidelines to stick to, or TDM is not proven, all of which they said to Sheila and I, but if they are never challenged as to why they do what they do, nothing will ever change for the better. With the evidence base I have gathered, I beg to differ with them that the case is not proven. It is. It's time a patients' movement was started to make a change for the better for everyone. Until something is done, the papers show that a large proportion of you will be unknowingly under or overdosed, neither of which are good.

 I implore you, take the time to read my spreadsheet and make your own mind up. If you then think like I do, take a copy of it to your oncologist and ask them about TDM and why they are not providing you with it.

 I am not hiding anything, I'm not being selective in what I have chosen to compile; I have included exactly what the papers say. You can look up and read the papers too, if you decide to; they are all online.

 I have looked for evidence that contradicts what I have found and have found none. I have asked two oncologists to provide me with any evidence they have that shows what I have found to be untrue. Neither of them have been able to do so.

 Here's the evidence:

Comments

Post a Comment

Popular posts from this blog

PART 3: I Reached Out and Found Helping Hands

We had challenged Sheila’s oncologist about dose monitoring in August, he didn’t like it and sent us for a second opinion. In the middle of September, we were invited to a meeting to get that second opinion. It turned out to be from the first oncologist we saw back in June. We were quite pleased since he had listened to us back then and had shown that he could change his mind to do what was best. I also knew he had been involved in research into dose monitoring and was aware of the tests available. To make the best of our time with him, I set out our position in a letter for him beforehand, which he had with him at the meeting. You can read what I said by scrolling through the PDF below: He recognised everything I had said in my letter and noted the papers I had picked in my references, to which he had contributed. He told us that more research was required and how hard it was to get everyone to join in and to design a multi-arm randomised clinical trial and get the money
Read more

Part 11: Life Beyond Cancer

Image
Part 8 was the last time that I told you about Sheila, who this is all about really, so here’s how things have gone for her and I since then. At the end of Part 8, Sheila was still recovering from 6 months of chemotherapy and we were dealing with the sadness of her mother’s death and were looking towards her ileostomy reversal. We held Sheila’s mum’s funeral on a fine spring day towards the end of April, at a lovely crematorium, surrounded by countryside. It couldn’t have been nicer (if these things can be nice!) and all arranged by Sheila. She did a good job. At the beginning of May, her ileostomy was reversed; something we were both looking forward to and at the same time, not looking forward to. We knew her bowel would have to learn how to cope on its own and her bottom would have to be trained again. We also knew about the potential to become a victim of LARS (Low Anterior Resection Syndrome), which can leave a person with a very badly behaved bowel and bottom for
Read more

PART 4: Discovering the Truth About Sheila’s Chemo

Image
It had been a long year for Sheila and I, with the shock of the diagnosis, operation, its aftermath and now the very real frustration of a lack of clarity regarding the dosing of her chemotherapy. On this issue, it felt like we were just not being listened to, never mind actually heard. Despite my best efforts to discuss dosing with her oncologists, they refused to engage on any need to check that their calculated BSA dose was actually right for her  as an individual , to make sure they were not over or under-dosing her . Every time we raised it, they, figuratively speaking, just stuck their fingers in their ears and went la-la-la-la-la. It was just infuriating me, so with help from DeWayne at Saladax, who had one of his Research Fellows send me a blood draw kit to stabilise Sheila's blood plasma at room temperature for long enough to get it to a lab for analysis easily and with his help to identify a lab that could do the test, I got on my way to doing something about it with
Read more