Interferon. Pegylated Interferon. These were not words I enjoyed hearing or being told it was a drug I would have to try. The first Interferon was so rank that they re-made it so it wasn’t as bad for patients. As a sensitive responder hearing these words made me feel. Well, sick actually. If the first one was that fucking rank it was re-made, how the hell was I going to react to the ‘nice one’?!?!
So after going back onto Bosutinib which was a failure in terms of energy levels and my liver, pegylated interferon became the last drug to try.
I didn’t want to take it, I took the prescription because, well, I was told to, but I suppose I thought it was worth a try. All treatment boxes ticked. I’d given everything a go. A really good go. Making the transplant decision ‘easier’. I could say hand on my heart that everything had been shit.
So I started the interferon 6 weeks ago. I did read the side effects leaflet but pegylated interferon is the standard treatment for hepatitis so it wasn’t that relevant. I’m also on less than half the dose for hepatitis, so basically dismissed all the side effects.
The first 48 hours were fucking awful. I did google side effects on the first day and chemo care came up. I ticked 5 out of 6 boxes. Fatigue. Nausea. Flu-like symptoms. Lack of appetite. Pain. The only thing I didn’t have was a sore injection site. Oh yes, I have to inject myself. That doesn’t bother me, I’ve done it before. 10 years ago for IVF stuff.
So.
Brilliant.
It then began to get better. The only side effect that went completely was the flu-like symptoms. But everything else was sort of bearable. The fatigue was pretty shit. But I had committed to a month. I would give it 4 goes and see how it was.
Check up after 4 weeks. I explained how I was feeling. My consultant was sad that I had reacted so badly to the dose. But I had started to feel a bit better with the side effects so I agreed to keep on going for a further two injections. My consultant said that she would drop me down to every 10 days, and suggested that I inject at night so I slept through the worst 12 hours. I couldn’t believe I hadn’t thought of that!!! What a fucking idiot. Which is exactly what I said to her! That I’m the fucking idiot, not her!
She is also on a mission to find out if anyone else is on less than 10 days on half dose and how they are. She is very reluctant to push me up to full dose. Thank god.
So. How have the last couple of weeks been? Better. Much better. The leg pain has really subsided. The nausea is still there but no way near as bad, and the fatigue? Well. Today hasn’t been good, but I have had a busy week. I have also been good at getting more sleep over the last week. An 11 hour night one night and a few 10 and a half hours. It makes a difference. Not sure how sustainable it is though, to need this much sleep for the rest of my life.
But all in all, I feel better. I have a day or two of feeling good after 7 days before the 10th day when I had the first 10 day break between injections, although, if I think about this 10 day cycle, that should be today. Last week, day 8 and 9 I definitely didn’t feel the drug as much, but today is day 8 of this cycle and I feel fucked. Maybe it was doing nothing all last weekend that made me feel better. Actually thinking about it, last Saturday I didn’t feel great. Ok, I’m not over analyzing too much. Overall, fatigue is less. This week, I was Peer Reviewing a hospital on Thursday so have been working today and I am exhausted. Haven’t felt like this all day since I was on interferon weekly.
So. Monday is the day. I get my latest Leukaemic rate result back. To see if everything was still under control after 4 injections. If it isn’t. Well. I’ll cross the bridge when I come to it.
If it is under control and have another leukaemic rate test done with 10 days between injections and it’s under control. And I am allowed to maybe go to injecting every 2 weeks, so I have a week of not so great and a week of much better. Well. I think I might have found the answer.
When I feel better like I did yesterday. It was a good day. A good week. Had some clients. Been asked to contribute to a pregnancy/mother website. Had amazing feedback from a talk I did at a corporate company. I saw my best friend who is over from The States. And we laughed and stayed out late because we were laughing. Well. Why would I risk this for a transplant?
With love and so much hope.
XXX
