, , , , , ,

Please note, this drink is not blood. I have yet to start actually just drinking it. You can take my word for it and if Jo looks pale, it’s because she’s working hard.

Another week, another rituximab infusion. Last week had been good news on the bloods, and then a reaction during the infusion, this week was bad news on the bloods…. And a reaction during the infusion. I guess some things are consistent.

First the blood work. My haemoglobin has dropped from 6 to 4.9. this was a bit of a shame as I was hoping the rise to six was the start of an upward trend, not a blip. Still as before it’s too early to get super excited and it’s lucky I didn’t. I was still disappointed at the reduction though.

The white cells were 13.9. Whilst I’ve never had a super high white cell count, some people with my condition push 100 or more, it does show the treatment is working as it was 45 a few weeks back and has now reduced three weeks in a row.

The platelets were at 75, so these appear to have increased a little but are now in an acceptable, if low, number.

All in all bit disappointed with the hb as it meant I had to have another two bag blood transfusion, which I had yesterday. Those are fine, if dull. You sit there and read a book as it pumps in. I’ve now had 11 bags of blood and if the treatment starts to take hold I really hope I don’t need anymore, as having the blood is a pretty clear sign my body isn’t doing what it needs to.

As to the rituximab. We took this week’s a little slower than before, and after a couple of hours I started to feel cold and sick. I went to the toilet, feeling like I might throw up, and came out and told them we needed to stop. Accordingly we waited an hour and started again, and there were no reactions this time.

So it’s good to note that with Rituximab, if I have had a reaction they stop it and it goes away pretty quickly, so don’t worry if any of you are about to have it.

The next day I slept for maybe 16-18 hours across the day. I was also as stiff as the day after a marathon. I always am the day after treatment. It’s a little annoying but it only lasts until the following night, so it’s not too bad.

I now have one more infusion to go, on Tuesday, and we will then have to wait a couple of weeks and see where the numbers fall. I’m looking forward to the end of pumping rituximab into me, but it’s tempered by the knowledge that unless my numbers pick up, and they hopefully should, I’ll still be transfusioning and we will have to move to the second step treatment without much of a pause. Much better would be if it buys me a gap in treatment of some kind.

The Ideal was always five years ish, but given my bone marrow involvement it’s more likely to be two or less. Fingers crossed it’s a long enough gap I can enjoy the summer this year at least.

So watch this space. One more to go and then waiting on results. And waiting is always such fun… 🙂

In more fun news I have also been sent some kick ass brownies, which were delightful, from the pudding stop from The Moran Clan. I also had some great non alcoholic cocktails (yes four months and no booze) from the Holmes collective. Getting nice things through the post and door had been my favorite thing about being ill!