Actually, it's not a laughing matter...The flush on his face, neck and chest which appeared on Day 18 gradually worsened over the following days and was a bright, angry red with a mix of dry flaky skin and some acne-like pimples by Monday (Day 22) when we visited hospital for Steve's weekly check up and observations.
Dr Nick prescribed an E45 cream to deal with the dryness and a steroid hydrocortisone cream to counteract the other side effects. Although the skin was a problem, other side effects of treatment have eased off and all the observations and test results were fine, so Steve was given the go ahead to continue taking the tablets.
Some people on the clinical trial have experienced eye problems, so eyes are tested regularly whilst taking the trial drugs. Steve's next eye examination was on Tuesday, Day 23 of the trial. He was not looking forward to it, partly because it involves bright lights shining right into his eyes which is uncomfortable, plus having stuff put in his eyes to dilate the pupils and stains to show up any any abnormalities. These blur his vision and make him susceptible to bright light for a while afterwards. This time round he was also very self-conscious about his appearance - his face now an explosion of acne, far worse than the average teenager.
We hoped that dousing himself with E45 cream whenever his skin felt dry and applying the steroid cream as directed would result in some improvement in Steve's skin. However, as the day wore on it was clear that nothing was changing...if anything, it was getting worse.
Simple things like touching the skin on his face when blowing his nose or putting a T-shirt on over his head produced a shower of flaky dry skin and make the acne-like pimples weep or bleed. Steroid cream is not supposed to be used on open wounds so by Wednesday evening, we had decided it was time to contact the hospital the next day for advice and, hopefully, be able to sort out some more effective treatment before the start of weekend when it's more difficult to get hold of people.
Skin problems aside, we thought we were beginning to get to grips with the dose timing regime: two vandetanib tablets and two selumetanib capsules at 11.30 am and two more selumetanib tablets at 11.30 pm, with fasting two hours before and one hour after taking each dose. However, a few seconds after coming to bed that evening, Steve suddenly realised that he had taken both sets of drugs at evening dose time, instead of just one. So another thing to sort out when contacting the hospital ....
On phoning the Early Phase Trials Unit yesterday morning, Dr Ioannis advised Steve not to take his 11.30am dose of vandetanib and asked him to come in to be checked over in the afternoon. We thought it would be a flying visit, so planned to go on afterwards to do the weekly food shop. As a result, rather than take the bus, we decided to drive. Imagine our horror to find the car wouldn't start - a completely flat battery!
Luckily one of our wonderful neighbours came to the rescue and drove us up to the hospital. Steve's bloods were taken and observations were done again for the second time this week, including the EGG and blood pressure.
His blood pressure was raised at 156 over 80. Whether that was as a result of taking too many tablets the night before, the stress of finding the car wouldn't start, or a side effect of the treatment to date we don't know. However, it's clearly something that needs to be monitored carefully especially as Steve is the first person to be taken this level of drug dose in the dose escalation study and therefore breaking new ground.
Dr Ioannis looked carefully at Steve's skin problems. He explained that the trial drugs stop the skin renewing itself in the same way that they stop cancer cells growing and spreading. As a result, dead skin cells aren't replaced by new healthy cells and this can cause rashes and spots. Sometimes, a nasty bug can get on the skin and start eating the debris, infecting the skin and making the problems worse. A skin swab was taken to test for this bug, just in case....
Steve has now been prescribed antibiotic tablets and cream/lotion to fight the infection. He still looks pretty bad, but the puffiness seems to be reducing and the redness appears to be a little more focussed in certain areas rather than all over his face.
But beauty's only skin deep...what matters is a person's character, rather than his or her appearance. Steve is my hero for volunteering for this early phase drug trial and keeping going through what would be a difficult patch for anyone. Let's hope the antibiotics do their job, the infection clears up, the old skin drops off and that he emerges with new skin as fresh as a baby's, and that it helps clear up the cough which has been bothering him recently.
In the meantime, we have decided to put Sunday's birthday celebrations on hold until such time as he feels confident to face the world and we can celebrate with the family. However, there will be cake for tea and a bottle of something special to drink. As any meso warrior will tell you, being around to celebrate another birthday is a milestone worth marking. This year it looks like we will mark it twice - a small celebration with just the two of us on Sunday, and another celebration as and when he feels better!
Just a dead car battery to sort out now.....oh yes, and the food shop.....