Exposing Oncology

You'll remember from reading Part 6, that I wasn't happy avoiding the issues I had discovered regarding the use of BSA calculation without TDM and so I decided to write to the Chief Exec of The Christie. The Chief Exec eventually sent his reply to my letters and a very carefully crafted reply it is too. I would have been proud of it myself, had I written it! It is a perfect lesson in how to look as if you are saying something meaningful, when you aren’t. It is a lesson in how to look like you are addressing the points made, but aren’t. It’s a wonderful piece of obfuscation! Well done Mr Spencer, you are a Jedi Master of avoidance LOL! You can read his response below, with my comments about his responses, in red: So, to date, no one at The Christie is prepared to fully or directly answer my questions. Should I assume that is because they think I am talking rubbish and don't want to tell me that for fear of offending me, or is it because I have hit a n...

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 ...

I thought I'd share a more lighthearted view of our journey to date this week as well, but you should follow this week's blog first, so this makes sense to you. When Sheila first had her operation last July, we needed to keep our family and friends informed of her progress and to let them all communicate with her easily because they are scattered around the world, so we set up a Facebook group called Paloma the Stoma where I first shared this little story: A Short Story The husband of a cancer patient found out how chemotherapy is given in the UK. He found out that the dose is worked out before treatment starts, in a very old fashioned way that’s not really great. He then found out what a teeny-tiny therapeutic range chemotherapy drugs have. Too little  and they do no good, in fact, it’s worse than that, too little and not only do they do no good, they positively increase the chance of your cancer coming back and still make you feel bad anyway. Too muc...

Simply put: he couldn’t, or more accurately, wouldn’t. He had my letter with him, with the lab report stapled to the back of it. He said he hadn’t carried out the test so he wasn’t able to recognise it and even if he did recognise it, it didn’t fit in with what he was allowed to do; it didn’t fit his “pathway”, he said. OMG, I thought - that was the whole point of getting the test done ourselves; he had already refused to do it and here we are offering him direct proof that he was mis-dosing my wife that he didn’t normally have and he was refusing to even recognise it, let alone act upon it!  I thought the top of my head was about to come off! Let me at him! As I opened my mouth to give him the benefit of my thoughts, he held up his hand and said “there are, of course, a number of other reasons I could use to reduce the dose”. At that point, I thought I should shut up and listen. He said that if Sheila’s side effects were bad enough, he could reduce the dose,...

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...

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 ...