Back in January I wrote about the fact that I had been diagnosed with Meibomian Gland Dysfunction. Well, it turns out I have it pretty severely now, and we think that it is caused by the velcade that I am having, albeit it that it is pretty unusual to have it! I like to be unusual. (Not). Basically, it looks like my glands have not only blocked up and caused inflammation, but now they have become blocked and infected (blepharitis) which have lead to what is called chronic blepharitis and what is called a chalazion.
So when I just had the MGD without the infection, the best way I was told to treat it was by using a warm compress and massaging both eyelids. You can buy masks from the chemist that do a similar thing, and wipes that you then wipe the eyelid with. Anyway, that seemed to be working really well until a couple of weeks ago, when the first stye/ chalazion occurred. It basically made my left eye really sore, really swollen and very itchy. So I took a trip to the GP on the Friday who prescribed me with antibiotics….and I also started on ibuprofen on the recommendation of a friend. (Before anyone says anything, I don’t have any kidney damage so whilst I’m not meant to take it, it felt like a sensible thing to try in the short term)
Anyway, into the hospital on the Monday to be told it wasn’t anything to do with the velcade (hmmmm….I don’t think so!), that I should come off ibuprofen so I didn’t cause any kidney damage and take antihistamines instead, and prescribed extra eye drops. And things very slowly seemed to improve.
Until the same day two weeks later, when it came back in the right eye (and less so in the left eye again). This time, I immediately started back on the eye drops which I luckily had, emailed my consultant (who hadn’t been the one to give me the previous advice), and got it agreed to go back onto the ibuprofen to at least help bring the swelling down a bit. This time though, I’ve had it really sore over the whole weekend with it not only causing the chalazion, but also becoming infected.
So today, back to the hospital and it was agreed that I wouldn’t have my final dose of velcade as it quite probably was that which had caused the issue. In addition, further to an article I was given by my consultant, it was decided to put me back on antibiotics, but mainly to increase the dexamethasone that I’d had reduced last year due to it causing me anger issues! Dex is an anti-inflammatory and I have to say that I felt better within a couple of hours. It’s still infected of course, but the swelling is lower and I haven’t needed the ibuprofen.
Now we’ve got a bit of a waiting game. Hopefully, my eyes will just improve as I shouldn’t be having any further velcade. That is over thank god. In addition, I’m hoping to get a bit of energy back too… I’m now meant to be going to daratumabib maintenance until my stem transplant.
But, my numbers went up last week. Grrrr. Nothing is simple. I think they’ll still try at least one lot of maintenance to see if the dara works better without the velcade. But who knows what they’ll do if they keep rising….we could be back to the DT-Pace regime. I did my bloods again today, and I think they’ll be done next Monday too…all of which will give us a better indicator of whether I’m hovering around the same place, no longer responding to treatment, or whether my numbers do what we’re desperately hoping, and come down a little further to about 4 or 5.
Somehow (I may thank the antidepressants for this), I seem to be coping relatively well with it all. As does Nick I think. We aren’t telling the children too much until we know and luckily because we’re not falling to pieces, that is much easier. There is no point panicking unless it becomes necessary. So, I’d ask people just to take care in talking in front of them so that we can tell them what is necessary, when it is necessary, rather than them overhearing something….thank you.
I’ll update on here when we know more. Keep your fingers and toes crossed for those numbers to come down further please….I’ll even accept a few prayers if people are that way inclined!!