Sorry there’s been a bit of a gap. I have been toodling along on my treatment – I’m up to 25 mg of Revlimid now. The good news is that my kappa levels are right down to around 33 – less than twice a normal level. I saw my Leicester consultant a few days ago. She wants to begin donor injections after Xmas. The idea is to start with a tiny amount – about 5ml and see what happens. I could then have two more lots over 6 months, depending on whether I needed them, which would go up in size to a proper IV infusion. I think the hope is that I get some GVHD to fight my myeloma, as well as making me 100% donor cells. They may be able to use some of my stored cells, but it would be a waste of a big packet if only 5ml were needed from a big (frozen) packet, so my donor may be asked for more.
I have had a head cold and missed a week of treatment, but it didn’t develop into anything. I had to take antibiotics though, which made me quite nauseous this time round.
I am struggling a bit with the treatment – very, very tired a lot of the time. Every few weeks I get a bit of an upset stomach, always on a Sunday, but the rest of the time I am hungry from the steroids and have the usual wind, bloating and indigestion. Also I get a lot of the usual aches and pains and the weekly ups and downs related to the steroids too. But knowing what to expect day by day helps and hopefully it won’t go on too long.
I still have mouth problems, but was told I had oral thrush. Couldn’t see it but I’ve taken Nystan which has helped, but the pain has returned since I finished it, so I need some more.
I have also had a hormone test – apparently having an allo transplant can be like a second menopause. It would explain the night sweats and also the fact I have vaginal problems. For the moment I’m using oestrogen cream. I know people don’t talk about these things much, but it can be a real problem for cancer patients generally, both men and women.
I’ll be seeing the immunology specialist at Leicester near Xmas, to see if I still need immunoglobulin. While it’s a bit of a pain to have it every 3 weeks, I think it has helped to keep infections at bay.
Not much else to say, but I’ll update again when there’s more news, which is likely to be just after Xmas.