Well, where do I start to describe the last few weeks? The Haematologist told me at the start of my chemo that this regime was generally well tolerated and I was optimistic that I’d get through this without too many problems. I should have been more wary. Having overcome the issues with my guts I thought I’d be able to enjoy my ‘week off chemo’ only to be knocked back by yet another side effect, this time affecting my eyes.
It started with a general feeling of grittiness in my eyes, then soreness followed by styes in both eyes. Here’s the ‘sciencey’ bit…..Apparently, the Bortezomib causes the tears in your eyes to become more viscous and therefore they tend to get trapped in the Meibomian glands, which are little glands running along both the top and bottom of your eyelids, which then become infected and extremely sore. After several days of pain, weeping eyes (not caused by me crying this time) and blurred vision the doctor prescribed Chloramphenicol eye drops which didn’t help at all and after another few days of wanting to scratch my eyes out I was prescribed Flucloxacillin tablets. I’d been using a heated eye mask as I had one for dry eyes and was massaging the eyelids as suggested on Dr Google but I can’t begin to tell you how painful this was and my eyes were so swollen one night that I couldn’t actually close them to go to sleep. Anyway, several days after starting the Flucloxacillin I saw an Optometrist who diagnosed Meibomian Gland Dysfunction (MGD) caused by the chemo, she stopped the Chloramphenicol and prescribed Ketotifen (anti inflammatory) eye drops, Hyloforte eye drops (artificial tears) and cleaning with special wipes which all seem to be helping but I’ve also to see an Ophthalmologist on Friday to see if I need further treatment through the cycle 3 of the chemo.
I was due to start Cycle 3 last Fri 23rd Aug but due to my infected eyes the doctors thought a week off may not be a bad idea and decided to postpone this until the 30th Aug. In addition to postponing the cycle they’ve decide that once a week might be more tolerable for me than twice which would be fine except that I’d booked a holiday ‘oop north’ for two weeks after my supposed last dose but due to the changes this last dose now falls in that week away. I will be able to reschedule this for the following Monday so it should be ok except I’ll still be on my other medications that week which often knock me for six, so may affect what I’ll be able to do in terms of exercise that week but, at the end of the day, it’s about getting better and not whether I can walk a hill or cycle 20 miles.
So I’m sorry if this blog has been a bit miserable but that’s how I’ve been feeling the last two weeks. My eyes are slowly improving and with that my mood and I’m a bit more prepared for the next cycle, armed with enough laxatives to move half of Glasgow and instructions for how to manage the eye problems. Both these complications are apparently rare – trust me to get something unusual. So what will Cycle 3 bring? Suggestions on a post card…!Hopefully nothing more and I can get through the rest relatively easily. Thanks again to Alistair who has to deal with my moans and groans and manages to be sympathetic most of the time – he really deserves a medal and lots of red wine. Please join me for the next blog if I haven’t put you all off with my tales of woe this time. I suppose it was never going to be easy….xx
Annie’s amyloid adventures 
Hi Anne,
Sorry to hear about the problem with your eyes, I had something similar last year when I was in Madeira. My eyes. Just dried up and became very sticky. The local pharmacist gave me some eye drops which helped and luckily it went away of its own accord.
The constipation is a very unwelcome side effect to say the least but you should be able to get on top of it in time when you work out what solution suits your problem. I had my Chemo postponed from today until next week because one of my blood counts was a little low. It happens occasionally (last time it was my haemoglobin count that dropped to 7 and Chemo requires 10. This increased overnight luckily). This time it’s my neutrophils that we’re down (they help white cells fight bacteria apparently and they were only one point down but they wouldn’t risk it).
Postponing Chemo can happen a lot to some people whilst others rarely have a problem (luckily I’ve been in that category for the last two and a half years so hoping it will continue with the last couple of issues just being a blip. It’s a pain when your cycle is delayed and it throws your plans out for non-Chemo weeks particularly when it’s short notice like we have. Just try to keep things as flexible as possible and you won’t get so downhearted when these things happen (I get very frustrated over it at times). Hope all goes well for the next session. Andy and Christine.
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