Unfortunately my levels have started to rise all of a sudden. Hard to know why – I’m hoping it’s not because of the Questran, which affects absorption. I don’t think it can be as I have it in the evening and the Revlimid in the morning. I happened to bump into my consultant when in for my Pentamidine inhalation and she suggested that I went straight back up to 25mg of Revlimid (was 15) and do a whole 4 weeks on top of the two I’ve just done – so no break. I’ll be doing a blood test though to check my counts are OK. So we’re hoping that this will kick me back down. The next step might be to add in Dex or maybe start a new drug like Pomalidomide or one of the other new ones. It’s annoying, but we’ve been here a few times before!
I immediately started to feel more fatigued and I ache quite badly, with very sore skin too. I seem to have managed to have pulled muscles on either side of my back as well, possibly overdoing the myeloma exercises I started a while ago. So I’ve been taking the odd paracetamol, though it’s not very effective. Not allowed ibruprofen type medication.
I had an issue with the Questran – my pharmacy gave me Questran light, which has aspartame in it instead of sucrose. Not only is it like drinking wallpaper paste in texture, but the wind is worse too, as is the acid. So eventually I’ve managed to get some regular, but I feel that I need to slowly use the old stuff up as it’s such a waste otherwise. I might do say a couple a week.
We had an interesting day last week. I was asked by Leicester to go and speak to camera about my Ig subcut training etc for their patient experience unit. It went well – they have a proper studio. I wanted to make some key points about the training, especially the written info, as well as the more general issue that giving people IVIG could help the hospitals, as it might stop people with low immune systems from cancer treatment getting so many infections and taking up hospital beds.
My brother has been diagnosed with bowel cancer and is due to have an op in early Jan. Looking at all the info, you realise just how different cancers are. But for all of us patients, being diagnosed will always be scary, regardless of the treatments etc.
Anyway, off for a nap now I think! If I don’t manage another entry before Xmas, have a lovely time all of you xxx