Back on the treatment

Hi, apologies for being so remiss with my blogs. There wasn’t really much to report.

Unfortunately back in Feb my light chains (an indicator of my particular myeloma) started to twitch and since then the myeloma has returned – earlier than expected. I did not make this very public until recently as there didn’t seem to be much point until I started treatment. I had to have my gallbladder out (eventually done in early July – painful afterwards but went OK), before the treatment started.

I have started (this week) a relatively new drug called Revlimid which has over 50% success rate at stabilising or improving myeloma. It does have some potentially dangerous side effects, in particular lowering my blood counts and Deep Vein Thromosis. They may put me on Warfarin to counter this. At the moment I take a small dose of aspirin. I am very tired and quite shaky and no longer need a sleeping tablet – I also have a sleep in the afternoon! Once a week I take a big dose of steroids, which as before, makes me buzzy, hungry and stops me sleeping for a night or two. I also get very pink cheeks and fingers! I do a three week cycle of pills and then get a week off. If it works I could stay on the cycle indefinitely. If it doesn’t then other drug options are available and long term possibly a second transplant – maybe using donor cells this time.

The good news is that I had a skeletal survey which showed no bone damage yet and my kidneys are OK (often vulnerable in myeloma).

As the treatment is going to take a while to adapt to, we haven’t gone away for a holiday. Bob is having a great time doing DIY (currently erecting a greenhouse) – he is not very bothered about trips away. It transpired that the kids wanted to do their own thing over the hols so we gave them the money we would have spent. Tom and Jemma went to Paris for a few days and Rosie and Paul did a rock festival in Belgium and then interrail (went to Transylvania!). We have helped Rosie and Paul move into a rented house in Aston. Tom and Jemma are still happy in their own little place and Bob and Paul helped them to erect a shed.

I have been very busy with union work and writing letters to the paper re the disgraceful spending cuts. I have also started throwing all my old school stuff away – quite a wrench, but has to be done!

I will try to write more frequently re the treatment and if anyone with myeloma wants to correspond re treatment please do. I still love having visitors, but old rules now have to apply – please only come if you are healthy!

Hope you all have a good holiday.