Thursday, 13 November 2014

Frustration, frustration, frustration....

As part of the AZD0424 clinical trial, Steve takes 3 capsules of the trial drug every day.  No eating for 2 hours before he takes the dose or one hour after.  And the dose is supposed to be taken within the same hour slot every day.

With almost two more weeks to go in cycle 2, he should have had 36 tablets left after taking yesterday's dose.  However, the bottle felt a bit light when he picked it up, so he counted the number of capsules left. There were 28 fewer than there should have been.  That's a lot....In fact it's the equivalent of one capsule a day for each day of the 28 day cycle.    

Steve is very particular about taking his drugs.  Three capsules fit into the lid of the bottle exactly, so if he tried to take more he would soon notice.  He also records in his red book every dose.  We know he has not taken more than he should.  We also know he has not lost any.  

Several phone calls to the hospital yesterday to alert them to the problem and discuss what might have happened.  We went there today to pick up the missing 28 day tablets, thinking it would be a quick in and out job.  Not so.

Not a single parking space to be found when we arrived.  We ended up parking on a sliver of rough ground next to the staff car park, the opposite side of the hospital complex to the Cancer Centre and a long trek to the Early Phase Trials Unit. And it was raining...

After more questions, Steve's bottle containing the remaining capsules - including today's dose - was taken back to the pharmacy and we waited, and waited and waited for the bottle to be returned with the correct number of capsules. Dose time passed. So did the hour's window when he was supposed to take the medication.  

The bottle eventually came back from the pharmacy at 1 o'clock, and Steve had today's dose an hour and a half after he was supposed to take it....Plus no food for Steve until 2 pm at the earliest.  Not good for someone who is losing weight.  Very frustrating...At least the pharmacy admitted it was their mistake, not Steve's.

Then came the next bit of bad news.  The bottle contained the 28 "missing" capsules, but not the ones that had been in there when it had left our hands, so Steve is still short of medication.  The bottle would have to be returned to the pharmacy to be re-issued with the correct number of capsules.  You would think it would be checked very carefully after one mishap.  Not so.  We will have to go back to hospital again tomorrow to pick up...

By the time we arrived home, there wasn't a single parking space in our street, or the one opposite, so we eventually left the car three streets away and had to walk some distance back to our house, by this time very hungry.  On getting inside Steve realised he had left his bag in the car, with money, treatment diary, and other important stuff and had to do another round trip to retrieve it....

Just about enough time to grab some lunch before heading out again to an afternoon appointment.

Not a good day.

There was one positive thing....Dr Ioanis popped his head into the room to say hello when he saw us in hospital.  He hopes Steve's scan results will be available by next week.  However, one of the radiologists is on leave so they are stretched at the moment, particularly as scans for trial patients are looked at very thoroughly, with more measurements to check than a "normal" scan.   

He also said that if the cancer has grown through the chest wall as it appears, but has not grown anywhere else, then Steve may be able to continue the trial - if he wants to - while they deal with the chest lump separately. 

So we will just have to sit tight and wait and see what happens next.  Another week in limbo...

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