Hi guys, just a quick update as I know a few of you are on watch and wait and will be having Rituximab in the future.
I last posted in hospital on Tuesday morning. The aim of the day was to give me the rest of the transfusion at an increasingly quicker pace with the goal that if all went well I could infuse in the day centre in an hour and a half.
We started out and I was again made dozy by the piriton drip. It was ok though, just a little sleepy. Then we started to increase the Rituximab dosage. I alternately read and listed to music whilst this happened as I think it’s good to distract yourself when something like this is going on or you could give yourself ghost symptoms. During the course of the day they gave me 15 minute observations to make sure it was all ok.
A couple of hours passed uneventfully and then I started to get some chest pain, so I flagged it up. The pain was a slight toughness to breathe and was a lot like pericarditis. It wasn’t too bad, but with rituximab it’s important to flag up anything straight away.
They immediately stopped the drip and gave me a ECG. (this is where they put the sticky pads on and then year then off again leaving you with odd hairless patches which would probably create a conspiracy like crop circles, if seen out of context). That came back clear and as soon as the fluid had been stopped my symptoms dissapated anyway. The observations continued and shortly after I was given the all clear to start again. So after twenty minutes break we started again. There were no further problems, even with the increased dose, and so I can now have the infusion in the much shorter time. You are much more likely to react on the first infusion, so hopefully that means I’m good for future infusions.
After that was done I had a blood test before release and my haemoglobin was at 4.7 (I was now only operating on the three bags of blood as the six before had worn off) and my platelets were 43. Both of these are super low. I’ve been scheduled to stay in the hospital for my next rituximab so they can give me three more bags at the same time. (One bag ahahaha. Two bags ahahah and so on) I also need to take it easy and avoid being cut as clotting would take longer than normal.
So good news. I can have the last two in the day unit, but bad news I needed to stay in for at least the next one because of my blood work. (as you know by now platelets should be 150-450 and haemoglobin 12-15)
Since then I have been home. I have suggested they sort me out a frequent attendee card, maybe with a discount on bags of blood or similar. It turns out it comes from donations, so I thought I might put a donor centre card in my window and cut out the middle man. Turns out that might not be sterile enough and there’s science to be done on the blood bags before I get them. Sigh.
In terms of side effects, Wednesday was good and I went for a walk, a short one. Benches are now my friend and we stopped on a couple. Don’t worry I didn’t have a coffee so it was no picnic…
I felt no worse than my blood would allow for, so no real effects from rituximab. Thursday was a little harder and I was heavily fatigued all day, mostly staying in bed. I’m not sure whether to count that as rituximab as my blood work is so low but the good news is I had no other side effects yet, and there are a fair few possible.
Today, after ten hours solid sleep, I feel ok, if tired, so I think I may be ok on Rituximab so far. There are a ton of possible side effects from the drug, but most are non severe and common, or very severe and uncommon. Some are really severe, like other cancers, but then my options other than the treatment were pretty limited. (For a full list you can refer here https://www.mayoclinic.org/drugs-supplements/rituximab-intravenous-route/side-effects/drg-20068057 ) but don’t panic. It’s a catch all list for any reported and some could be unrelated to the drug.)
So first dose was ok. We will see how bad my blood work is on Sunday when I go in for Monday’s transfusion and infusion.
As for results, Rituximab works pretty quickly and my white blood cells are already lower. It may take a little longer for the bone marrow to free up a little more room for red cell production and then I have to wait for those red cells to be made. So for me it will take a month or so to see if we have any good results. For others with a much lower infiltration of bone marrow it will be much quicker.
Overall pretty positive. I’ll be a lot happier if and when the haemoglobin goes up as I will be less anaemic then. I’ll also be happier when the platelets increase and I don’t have to watch out for sharp objects, well anymore than usual. Now is certainly not the time to take up that dream needle factory job.
Anyway roll on infusion two.