Monday 27 January 2014

When do you try tapering-off the ECP treatment?

Since October, my care seems to have mostly focused on treating infections, i.e. the Hodgkin's Lymphoma and skin GVHD has almost seemed incidental. That's not too surprising though really, given that between October and December I spent over half of my time as an inpatient on IV antibiotics. However, in the background, the fortnightly ECP treatments at Rotherham General Hospital still needed to take place, hence I've continued with regularly zapping those white blood cells of mine with UV light.

I've actually had nine ECP treatments now, and it's still proving to be an easy ride, as I've not had any noticeable side effects really. Having said that, there have been some bumps in the road. As you can likely appreciate, I've been unable to beat my record for the walking test, as my big toes have been quite sore at times, hence I've skipped the walking test, as seeing how far I could hobble along the hospital corridors would have been a meaningless exercise really. Also, in late December, my hickman line decided that it was no longer willing to part with my blood, and that resulted in my eighth ECP treatment being delayed by three weeks, whilst I could get my hickman line sorted.

Despite my first attempt at the eighth ECP treatment failing on both days, leading to it eventually being rescheduled for three weeks later, the first day wasn't an entirely wasted journey, as I did still go to the medical illustration department, where another set of photos of my skin were taken for comparison purposes; i.e. another member of the NHS staff had the misfortune/pleasure of me flashing my bum at them. Another lung function test was also necessary for comparison purposes, but that never took place until I had my ninth ECP treatment, as that required an appointment to be made; Once again, I was congratulated (a few times) on my ability to breath normally.

My hickman line playing-up did complicate my ECP treatment schedule, as instead of there being two weeks between my seventh and eighth ECP treatments, there was actually five weeks. As you may remember, after the eighth ECP treatment is when my progress needed reviewing, in order to determine whether the ECP treatments seemed to be working, and consequently whether their frequency needed adjusting. That review did take place, albeit three weeks later than planned, and it was decided that my ninth ECP treatment should be only two weeks after the eighth, and then I should switch to every four weeks, as that would pretty much bring me back on track.

Note: My Prednisolone (steroid) dose was reduced from essentially 12.5mg/day to 10mg/day after my fifth ECP treatment, and my Ciclosporin (immune suppressant) dose was reduced from 75mg/day to 50mg/day after my eighth ECP treatment, hence the doses of those medications were (and still are) at most half of where I started.

Unfortunately, after my ninth ECP treatment, those plans were changed, as it was decided that my tenth ECP treatment should be two (not four) weeks later, due to my skin being pretty dry in numerous places, looking slightly discoloured on my arms and legs, and appearing especially red on the back of my hands. To be fair, judging my progress with the ECP treatments isn't exactly easy, as there are a few potential causes of my skin GVHD flaring-up, i.e. it's hard to know what is causing what.

Note: The infections that I've had recently will have caused my immune system to ramp-up, which can result in flare-ups of GVHD, i.e. my skin may have been caught in the cross-fire. Also, I haven't been able to get a shower as often as normal, which is when I usually applied the moisturising cream to help protect my skin; The dressings on my big toes, from having my toenails surgically removed, and on my chest and neck, from getting my hickman line sorted, has meant that I've often just been getting a wash, rather than a shower, due to having to keep the dressings dry unless they were about to be changed. Finally, the ECP treatments may not be working sufficiently well to counteract the reduction in the steroid and immune suppressant doses.

Hopefully, after the tenth ECP treatment, I will be able to switch to only returning every four weeks, but given that it's still a little over a week away at this point, only time will tell whether that proves to be the case. However, in the mean time, I will leave you with a photo of some pretty neat art on the Rotherham General Hospital roof - I can't help but notice it, as I hobble my way along the corridor to the ECP treatment room:

Rotherham General Hospital - Art on Roof

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