Thursdays Update

Steve and I went to see Tom on Thursday, sorry for the delayed update


Tom spent time with us understanding about our road trip and what we thought about the information that the doctors had given to us. Both doctors had written to Tom so he had an insight into their thoughts and he was more interested in what Steve thought of it all.

Tom felt Steve didn’t need to have a MRI scan as he is sure that the pain is coming from the growth in the cancer where is the kidney was and the best way to deal with this is to start Sutent as soon as possible.

Tom explained how Sutent would work, which is that you take 1 tablet everyday for 4 weeks, you then have 2 weeks break and then start again. So basically a cycle lasts for 6 weeks, where 4 weeks you are taking a tablet and 2 weeks your not.

After 2 cycles (12 weeks) Steve would be scanned and dependant on whether the tumours have stayed the same or shrunk then Steve would continue. Tom would see him before each cycle begins, so every 6 weeks to monitor him.

Sutent like most drugs does have the potential to give you side effects and not particularly nice ones at that: Sickness, Diarrhoea, Swollen/Sore hands and feet, Weight loss are just a sample of them!

That said not everyone gets all or in fact any of them but Steve is worried that he is going to get side effects as bad as he did on HD IL2 and that is understandable but Tom and Wendy (our fantastic Macmillan Nurse) have lots of things that can help the side effects.

Steve would remain on this drug, until the side effects became too bad or the tumours started growing again. They say on average this drug will work for about a year but who would ever put Wrighty in the average box!!

There is just one more avenue that we are looking at before Steve starts Sutent. Which is a clinical trial which is running across the UK and in fact across the world. It is being run by a drug company as they are at the final stages of wanting to get their drug licensed. The trial is call Axis and is being run in Cambridge (which is where we heard about it from) and London, so if Steve got excepted then he could do it under Tom's care. It is a hard trial to get on and so with Steves previous blood clots we dont think he would get onto it but Tom and or Tim (not sure yet!) are going to put Steve forward and we will see what happens.

So by Thursday a decision will need to be made.

Steve and Bryan are going to see Tom (I am unfortunately away in America with work) to let him know what Steve would like to do. I have however written notes for Steve to take so he remembers everything!!

Which is:

Join Trial or if not accepted start Sutent at the begining of February.

The reason for February is that Steve and Ginge (Simon) want to take the kids Skiing and it is better if Steve does this before he starts the treatment.

Oh and some new pain medication as Steve is now getting quite a lot of pain, it is mainly at night but is now creeping into the daytime as well. He is so brave and doesnt make as fuss but I can tell. Mr Wright is not being very good at taking pain killers! He doesnt want to take them! and Im nagging him to take them and now Wendy and Tom are too. Steve shouldnt be in pain and if he is not taking the pain killers then he is choosing to be in pain! Rant over! Its just I hate to see him in pain and want to help him so much but he needs to also help himself.

So Thursday decision will be made on Steves next course of treatment and I will update when Im back from America.