Tuesday 30 June 2009


Back to hospital today to talk to the doctor and cancer nurse Alana about taking part in the clinical trial of Velcade. More tests and measurements (bloods, weight, ECG, temp, BP, CT scan and X ray - I think that was the lot) to check that Steve is a suitable candidate for the trial, and yet another wait of several days to get the test results back which will give the green light for treatment to start, or not, as the case may be.

Steve has a little red book setting out the main side effects/symptoms to look out for, when/how to contact the doctor if any go into the red/danger zone, and how to minimize the risk of infection once the treatment starts (as his immune system will be weakened by the chemo).

On the way home from hospital, I went to the chemist to stock up on a couple of essentials: an "in-ear" thermometer to check if he develops a fever; alcohol-free mouth wash to help reduce the risk of mouth ulcers and a soft toothbrush, to minimize gum damage when he cleans his teeth. He'll have to give up his live yogurt for the time being, but can drink alcohol if he feels like it. Oh, and dentists visits are out for the duration - there had to be a sliver lining somewhere!

If he's accepted on the trial, he'll start next week with a double dose of cisplatin and velcade the day after the last radiotherapy session, followed by velcade only next Friday, then two more velcade sessions the week after, followed by a week's "rest". The second 21 day cycle is due to start on 28 July, with a similar pattern of one double dose of drugs, followed by three single doses. At the end of the second cycle, there are more tests and CT scans to assess the effects of the treatment. If it's positive and Steve is managing any side effects without too much of a problem, the chemo treatment continues for four more cycles. By my reckoning, the last dose of Velcade is due to be given on 30 October and end of the final cycle of treatment would be 9 November.

The potential side effects do not make particularly pleasant reading, but there are ways to help deal with the most common problems. Even so, it's a bit unnerving to think that the chemo may make him feel rotten, bearing in mind that he feels OK at present.

We find ourselves being pulled in opposite directions - on the one hand, Steve was getting frustrated by the time it has taken to get everything in place to start treatment which felt like an age even though it will begin within three weeks of diagnosis, which is actually very fast. On the other hand, now it's about to start, we are both feeling apprehensive about what effect the treatment will have on him, both in terms of unpleasant, potentially life-threatening side effects and the long term outcome - will it really slow down the growth of the cancer cells, prolong life expectancy and improve quality of life? If it does, then it will be worth it.

Until it begins, we have no idea of how Steve will react. The frequency of hospital visits also makes it difficult (but not impossible) to fit in trips away from home, assuming he feels up to it, so we're still unable to make firm plans to do anything much, apart from putting treatment days on the calendar and taking it as it comes.

And it starts tomorrow - watch this space.....

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