, , , , , ,

Hi everyone. I just wanted to update you again on my treatment. I attended the hospital for my second infusion of Rituximab, as well as two bags of blood, which is what I had agreed with them at the first infusion last week. I wanted to tell you the cautiously good news, as well as the effects of Rituximab, for those of you on watch and wait.

For those of you waiting for Rituximab the effects have been ok once I had the infusion. A solid sleep of ten hours that night and the following night. General stiffness and slight under the weather (think mild hangover) and then it slowly disapates. Due to the break down of white cells into uric acid I have been weeing more and with more pungency, but other than that the reaction is ok and resolves itself in a couple of days. (unlike true chemo which I hear is harder on you).

Where I have had the issues are with the actual dosing, eg when it goes in. This time I had uncontrollable shivering and chest pain as a reaction to hoping the dose. One quick ecg and a turning off later and I was back to normal. (Although it blew up quickly and I worried the nurse). Once they were sure I was ok, they then turned it on at the lower rate of infusion and I was fine for the rest of the hour dose. It just took a little longer. Obviously my body is not so keen on poison being pumped into it….

So to the second trip. Having been prodded so many times last time to find veins I was a little worried about the canulla, but it went in first time, which was nice. I had spoken to them about a picc line, which is a semi permanent line from the upper arm to the heart for more regular use, but given it was four infusions we decided against it as it comes with risks. No one wants a blood line dislodged in their heart if they didn’t need it in the first place….

They took my blood and checked the count, and this is where the cautious good news comes in. My red cells were up. Haemoglobin had gone up from 4.7 to 6 and platelets from 43 to 75. The white cells had dropped too from 45 to 27. Having been two weeks since my transfusion this was obviously my own body starting to make more itself.

The total remission goal of the treatment is to get my haemoglobin up to 12 and platelets up beyond 150. I don’t think we will hit that with Rituximab due to how infiltrated my bone marrow is, but this was a good start and in my opinion shows the spleen is at least reacting.

We decided I didn’t need the blood transfusion after all and we should wait for another week of treatment to have finished to see where I was. (Rituximab works for a week or so in your system, so this was really only day six).

So good news. Still very low, and normal patients would be transfused to 7 in hospital, but given I can just about operate on 3.5-5 I’m hoping I have more energy this week than for the last two months. I’ll probably know today once the rituximab hangover wears off and I feel as I should do for my numbers.

Finally we booked me in for my two more sessions on The next two Tuesdays and I will be having them in the day ward, hopefully without reaction.

So all in all, good early news. Rituximab seems to be working somewhat even within the first week. It’s side effects have been ok, and I feel better than before. The one big question mark is how much it affects my bone marrow which is where the real problem is, but we will have to wait and see.