Friday, 17 July 2009

and now for something completely different...Cycle 1, Day 11

That's it - the last dose of Velcade in Cycle 1 of the chemotherapy has been given. We can now look forward to something completely different: ten whole days without a planned hospital visit. The last time that happened was prior to Steve's diagnosis, between the first CT scan in late May which showed up fluid on the lung and going into hospital in early June for the chest drain, thoracoscopy and pleurodesis.

Fortunately, the hiccup with Steve's temperature on Wednesday has not affected his red cell or blood platelet count, so he was cleared for treatment at this morning's visit. Before leaving for the "week off", we talked some more about the chemo's side effects, to get a better idea of what to expect in the coming months, especially as we're hoping to spend a little bit of time visiting away from Oxford at the end of some of the three week cycles.

Nausea/sickness is caused mainly by Cisplatin, so should not be a problem for more than a few days after the start of each cycle. However, tingling and numbness in hands and feet and ringing in the ears are particular side effects of Velcade which (if they occur) have a cumulative impact. Something to watch out for....

The most common side effect of all chemo is tiredness/fatigue - but people react differently. In some, fatigue peaks and troughs follow the pattern of treatment, fading away in "rest" weeks. In others, tiredness can build up over time, increasing towards the end of the six cycle course of treatment. Sometimes, it can be a combination of the two - peaks and troughs in weeks 1 and 2 and respite in week 3, gradually ratcheting up over time. Other people recognize the onset of fatigue, modify their behaviour accordingly, and don't notice much change as the months pass. We'll just have to wait and see what happens to Steve.

The most significant side effect of chemo is the way it suppresses the immune system. The importance of minimizing the risk of infection was impressed upon us yet again, and acting swiftly if his temperature reaches 37.5C, even if it means phoning the hospital at 2 am. Otherwise, being careful about hand and food hygiene, using a hankie and avoiding those with coughs and sneezes wherever possible is the order of the day. Common sense really.

The jury is still out on how the hospital will deal with swine flu, should it affect staff, patients or contacts of either. However, there are facilities to isolate patients with infections and those undergoing chemotherapy are recognized as a vulnerable group and will be treated accordingly.

We also learned that Velcade costs over £3000 per cycle rather than per dose, as we thought originally. However, at £400 or so per mil, it's still hugely expensive. It had better be worth it!

Although no hospital appointments for 10 days, the meso stuff doesn't go away completely in the meantime:

The trial nurse will be in touch next week to sort out the arrangements for a CT and X-ray as part of the review of Steve's treatment at the end of Cycle 2.

We will also be visited by solicitors experienced in dealing with mesothelioma claims, contacted through Prospect (my union). We're not confident that Steve's exposure to asbestos can tracked back to a particular time and/or place. However, bearing in mind that no compensation was available when Steve's dad died as a result of mesothelioma, it's something we ought at least to explore now the family has been struck by it again.

That's enough meso-mania - time to think about nice things to do in the next ten days!

One last thing: Debbie Brewer ( was diagnosed with mesothelioma in November 2006. Following a procedure called chemoembolization, she is now in remission. Debbie is having a party today to celebrate being 50. Happy birthday Debbie and many, many happy returns :)!

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