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Hellies clinical trial adventures: part eight

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 I've had a bit of an eventful time since my last blog. On Sunday as I was baking, I suddenly experienced a lot of pain in my upper abdomen. It came in waves and it got so bad, I could hardly talk. 

In a new blog, a person with MS chronicles her journey taking part in a clinical trial for the drug bexarotene. Part 8, where Hellie suddenly encounters a bunch of issues.

I'm back at the hospital for the last of my weekly appointments. I have to say that I'm not feeling great today, as I've all the tell tale signs of a sinus infection and have slept badly, feeling rather rough. That and no coffee has transformed me into a useless being. 

I've had a bit of an eventful time since my last blog. On Sunday as I was baking, I suddenly experienced a lot of pain in my upper abdomen. It came in waves and it got so bad, I could hardly talk.

Once the pain settled down a bit I decided I had better call the clinical trial team as you should let them know about anything like this. I was put through to Prof Coles himself and felt rather like a stupid drama queen, but he was very nice about it all. He said to let him know if the pain got worse and if it did to go to A&E. I hung up and then the pain started up again. It got so bad I didn't really know what to do with myself. Hospital I hissed to the husband, who thought I was mostly being hysterical. I called up Prof Coles again, I can't say I remember what I said, as the pain was so bad now. But he asked me to tell them to check my amylase levels. 

I guess I should stop to mention that one of the nasty side effects of this trial can be something called pancreatitis, which appears as severe upper abdominal pain. Prof Coles said he thought this was highly unlikely so early in the trial if at all. And that the pain shouldn't really have even stopped temporarily if it was. But best to have it looked at. I felt really silly when I was on the phone with him as tears were dripping down my face, I like to think I am a rather composed person and not normally hysterical, but the pain was just awful.

bag with lots of pill bottles.

After 4 hours of prodding, x-rays and ultrasound I was told I have a two centimetre gallstone, that was probably the culprit. I actually felt really relieved to hear that it wasn't anything more sinister. But they seem to think it should be removed. So I need to go on a list for surgery.

So, today in Cambridge I was mostly talking about my adventures on Sunday with Dr Nick. He said I should make sure that I look after my own health and get on the list for surgery as these things take time. As for staying on the trial he didn't think that should be a problem. I was sent home with a months supply of drugs and will now start seeing them on a monthly basis instead of weekly.

As well as that fun, as mentioned I have also been battling a sinus infection. It started as a headache last week and has now moved on to feeling like I've been hit over the face with a plank of wood. I guess why have one thing wrong with you when you can have several... I mean I am starting my summer leave in two days time so sod's law states that I need to be sick!

..and now for something completely different

I had just about finished the above blogging as I came back into the office yesterday when I suddenly got a call from Prof Coles. It seems my liver values have jumped up a lot or down...I am not sure which, either way it could be a sign of infection so he asked me to stop taking the drug for now, and come back in again on Tuesday, instead of waiting another month. They have also asked me to have another blood test on Friday to make sure that my liver values are going back in the right direction. Thing is, it seems that your liver values can go a bit crazy when you have gallstones. But they aren't sure if it's the gallstones or being on the drug that has caused it. Either way, I would rather just find out what is wrong and get back on the trial. So chasing the GP for blood tests it is...wish me luck!