The unacceptable face of drug trials

As you know I’m taking part in the ALLTO drug trial, and taking Lapatinib tablets daily. The main side effect thus far has been diarrhea (a disappointing Level 2 on a scale of 1-5). On Thursday, I noticed that I had a slight rash on my arms and trunk. I’d been warned that this was a possibility, and by Friday night it had spread to my neck and face, but still seemed pretty inconsequential. I knew I was seeing my oncologist on Monday, so I mentally added it to the list of things to talk about.

On Saturday morning, Ned and I got up at stupid o’clock to join the queue for ground passes for the tennis, and the rash wasn’t especially noticeable. See? (Or rather, don’t see?)
The rash got redder as the day went on, which made me all the more keen to keep my hat and shades and Factor 50 sun cream on. Even so, my face was very red at the end of the (fabulous) day.
I went to bed.
I went to sleep.
I woke up.
(Look away now if you’re squeamish.)
Pretty spectacular, huh? And pretty itchy, with that funny, stretchy feeling you get when things are swollen and there’s not quite enough skin to go round.
So, a phone call to the hospital, then off Alan and I went, with an overnight bag as instructed. We got pretty much straight into the A&E system, and then questions were answered, bloods taken… and all the time the rash was getting worse and worse. Here it is at the zenith (or nadir):
What you are looking at here, my friends, is a Level 3 skin toxicity reaction. And the scale only goes up to level 4. (Oh yes. As George Michael once sang, “If you’re gonna do it, do it right.”)
We had to wait for the blood results before I could have any treatment, but once they did get back – around 2pm – I was given an antihistamine shot and asked to stay in hospital for a couple of hours to see whether they would have an impact. Fortunately, they did, and I was allowed to come home, with antihistamine tablets for tonight and tomorrow, then I’m back for my scheduled appointment at the hospital tomorrow.
Unfortunately, none of this is working as quickly as I’d like. Here I am now (7.15pm):
The on-call oncologist was a star. (Her name was pronounced Maureen but spelled in an Irish way that – out of respect for her whole star-ness – I’m not even going to attempt here.) She explained that Lapatinib blocks the body from absorbing a substance called HER-2 – something the cancer I had used to grow – but it also blocks HER-1, and the symptoms I am having are associated with lack of HER-1 in the body. (Needless to say, we agreed that I stop taking the Lapatinib. Some side effects I can handle. Chronic diarrhea? If I must. Chronic diarrhea and a face like – as Joy puts it – “the ‘before’ in a ‘before-and-after’ reconstructive facial surgery record”? I’ll pass.) What’s happened is that I’ve had a reaction to the Lapatininb, and then my skin has reacted to the reaction, somewhat over-zealously.
So, we left the hospital shortly after 4.30pm, and here I am, back in the bosom of my family, and hoping for a radical reduction in symptoms overnight. My face is still sore but now the swelling is going down there’s less of the stretched feeling. And I feel pretty normal. So long as I avoid mirrors, of course.

2 Responses

  1. Daria says:

    Oh you poor girl … thank goodness the swelling is going down.

    Glad you are feeling good.

  2. Debby says:

    Oh, my gosh! Your poor face! I'm glad the swelling is going down.

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