Sunday, 6 April 2014

VanSel1 drug trial Cycle 2 Days 16-21

One more dose of selumetanib tonight and Steve will have finished the third week of cycle 2 of the VanSel1 clinical drug trial.  Just one more week to go before we know whether it's all been worthwhile.

When asked how he's doing these days, Steve's stock answer is that he has felt better, but it's bearable.  Which is true up to a point.  None of the horrible metallic taste associated with standard chemo.  Not a lot of nausea.  No tingly fingers or toes (peripheral neuropathy). No need for blood transfusions or problems with low white blood cell counts, compromising his immune system.

But the fatigue is still there - he has little energy, so has been taking it easy most of the time, over the last 10 weeks. Daily diarrhoea takes its toll over a sustained period. He literally feels drained, although taking imodium is usually an effective way to manage this side effect.

There have been stomach cramps and times when his appetite has all but disappeared - one day, he couldn't even finish the banana he thought he might be able to eat for one meal....Then there are times when he suddenly feels the need to eat or become nauseous.  All completely unpredictable, so no point in spending a lot of time cooking elaborate meals.  We need things which can be prepared very quickly when needed, and can be eaten in small batches. Tapas to the rescue!

However, the once awful skin rash is not very noticeable now; the cough appears to be easing off a little and yesterday, for the first time in ages, Steve ate three meals - most unusual, but encouraging.  In addition, this weekend he has seemed brighter in himself.  

So... the side effects are bearable, but not the sort of thing you would wish to live with on a daily basis, given a choice. Likewise, the knock-on impact of these side effects which make it difficult to go out, visit family and friends and travel any distance would not make for the most enjoyable or fulfilling life on a long term basis.  

But if it means that the cancer stayed stable, would you be prepared to live with those sort of restrictions, and manage those side effects, if it gave you extra time? Tough choice....but not one we have to face quite yet, and maybe not at all...We'll just have to wait and see. 

Without doubt, Steve's skin condition has improved slowly since taking a break in treatment then resuming with a lower dose. Who knows, perhaps the worst of the remaining side effects may ease off over the next week in a similar manner, albeit taking a little longer....  

On the bright side, we cheered on Oxford to a convincing win in the Boat Race today!  

And being tied to the house has meant that more progress has been made with spring cleaning, redecorating and reclaiming the garden from the wilderness that has taken over over the last five years since diagnosis, when home maintenance and gardening were the last thing on our minds.  

Busy week ahead.  More of that in a future post. I'm ending today with good news.  The European Parliament has voted in favour of new legislation which will require all clinical trials to be registered and results published on a publicly accessible data base.  What a pity we have to wait until 2016 before it comes into effect.  

Still, it's another piece in the jigsaw puzzle of beneficial changes that are on the cards, including the (Saatchi) Medical Innovation Bill (if you haven't given your support yet please follow THIS LINK and sign the petition!) and the Early Access to Medicines Scheme (EAMS) , which starts this month! 

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