First thing that surprised me was a change in procedure at the clinic. I had to get up early in the morning to start the treatment. The reason I was told, is that they want the Removab immune reaction to happen earlier during the day while the doctors are still present. They don’t make changes like this for no reason and the rumour going round the clinic is that someone died recently from the Removab treatment. Not surprising, the drug attacks anything that expresses EpCAM on the cell surface, and the side effects can be severe. Also worth noting that Removab was not approved in Australia by the TGA due to too many adverse side effects.
I was ready with a thermos full of hot tea waiting for the chills and high fever, but this time the reaction never came. I just felt a little more tired than usual. How disappointing. I must be building up resistance to the antibodies.
I was told the next day that based on my blood tests, I did have a responce to the treatment however. I guess that is good, but a reaction would have been reassuring.
Four days later, Wednesday, I had my second Removab infusion. This time they doubled the dose to 10 micrograms. I was hoping for a good reaction, and I certainly got my wish. I know how to handle the extreme fever chills and shakes now, but I made the mistake of staying too long in the infusion room, and the chills caught me on the way to my room. I started shaking uncontrollably in the elevator of all places. When the reaction starts, the body feels the need to raise the core body temperature to over 40 degrees and to do so as soon as possible. To achieve this, every muscle in your body is instructed to spasm in order to generate heat. And spasm they do, quite violently.
Made it to my room, ordered 3 heat packs and drank lots of boiling hot tea. Luckily managed to yet again get ahead of heat curve and avoided the worst of the spasms. The reaction was quite severe this time. My temperature rose to 40.1 degrees within 30 minutes. That in itself is not so bad, but my blood pressure shot up to 220/130 and this was giving the nurses a lot of concern. This was accompanied by a migraine which made it quite an unpleasant experience overall.
They got my fever down with drugs, but it shot up again few hours later and refused to come down. (Not that I was complaining. Its free hyperthermia after all.) It was a long night. The next day’s blood tests showed highly elevated liver enzymes, so my liver certainly got hammered. I just hope that it is doing some good.
I cancelled my NDV (Newcastle Disease Virus) treatment in Duderstadt and this gave me 4 extra days that I could stay at Hallwang. Decided to try and squeeze in a third Removab shot. If they double the dose again, as they always seem to do, I think that I will be in for quite a ride.