BYM338 on tour

 

 

A late visit to hospital this month, as I was poorly with an infection for a week followed by a week being even poorlier with a reaction to the antibiotics.  Anyway, finally got there on Friday last week.  Still not much to report – the day went much as usual, with the alarm going off at 5am, and we set off just before 6 o’clock.  Friday traffic seemed much better than Monday’s, so it was an easy journey and we arrived at about 8.30 am.  Since I’ve been feeling so ill, I agreed to Colin wheeling me into the hospital in my wheelchair, which would be fine if only I could get out of the blooming thing.   Sadly, even with the electric riser cushion I wasn’t able to do it so poor Colin not only had to lift me out of the car, but out of the wheelchair too.

I had an early appointment with our new physio lady.  She seems very nice and down-to-earth, admitted she doesn’t know much about IBM yet but looks forward to learning.  I’ve been having a lot of problems with an immobile shoulder, the result of some old injuries, and she gave me some different exercises to help with that.  She also encouraged me to get back to the regular exercise schedule as soon as possible, as obviously that had all gone out of the window while I was feeling ill.  After she had gone, there was an ECG and a couple of questionnaires to complete and then we just had to wait for the drug to arrive. 

The trial doctor popped in to do the questionnaires, and we talked about when Novartis were likely to decide when/if the trial was going ‘open label’.  Her feeling was that the grip and pinch test results, along with the DXA scan data, were likely to show enough improvement for Novartis to be able to proceed with the trial, although it may prolong things if they decide to investigate higher dosages or different timescales.  We all agree that a 6 minute walking test for IBM patients is pretty useless – we’re not natural walkers any more, and are more likely to walk slowly and safely than rush about and risk a fall.  The difficulty is that the people who devise drug trials, although undoubtedly very clever and highly qualified, aren’t medical people – they are scientists.  They have very little contact with real-life patients, and don’t always take all the factors into account in the way that clinical staff – doctors and nurses – would.  I think the premise of this trial, if it was simply intended to make us walk faster, was flawed from the outset.  Anyway, there are many things that Novartis could decide to do at this stage, and there will be a meeting in Switzerland in July to discuss the options.  One very real possibility is that the FDA will say that the results are too insignificant for the project to continue, but given that there is nothing else available for us at present, and any improvement is better than none, I hope they won’t take that view. 

Colin was outside when he saw a courier arrive with a drug box at around 1.15pm.  He thought it might be for me, but he was disappointed when the courier headed off to another part of the hospital.  We carried on waiting…..  Around 2 o’clock, the same courier arrived in our department.  He had been on a complete tour of the hospital looking for the right place to deliver his package.  Pity it never occurred to him to ask at the reception desk.  Anyway, I already had the cannula in ready, so it didn’t take long to get the drug hooked up followed by the glucose flush through, and we were away by about 3 o’clock.  I decided that I’d sat down enough, and walked to the car.  I felt that I handled the slopes better than usual – they usually hurt my knee and slow me down considerably, but Colin said I was quicker than normal.  Possibly the only benefit of spending nearly 2 weeks in bed feeling like death!

We got home just before 6 o’clock – traffic was fairly heavy, and Colin needed to stop off at Oxford Services to stretch his legs.  It’s a lot of driving for him, and central London is so busy and difficult to get through that I know that I wouldn’t even attempt it myself – I’m so timid that I’d still be there now, waving people out in front of me and hesitating at junctions…..  I’m grateful that he puts himself through this for me every month, and hope that it will all be worth it in the end.  As we often say, I might not be much better than I was when we started the trial, but I’m no worse and that, when you have a progressive disease, is a very good thing.