April update – still between treatments

Sorry it’s been a while, but there’s not been much to report as I am still between treatments. I had my usual appointment today and my kappa light chain levels (which are the measurement used to assess how my myeloma is progressing) are still rising but only relatively slowly and are still a bit of a way from needing to be treated. After I came out of remission prior to my Revlimid treatment I had a similarly slow rise and in fact the levels only rose sharply after my gallbladder op, although that might have been a coincidence. The longer the gap between treatments the better.

Not to say there haven’t been some problems. I have been extremely tired for reasons which are difficult to explain but could be related to a failure to really get back to normal after coming off steroids. If the tiredness persists they may do a test on my adrenal function. My blood pressure (which is always low at the best of times) has been really low on and off, so they did a postural test today – take it lying down and then sitting up – and there was a drop. Low BP can be associated with my type of myeloma, so it’s something to keep an eye on as my levels rise.

The other issue for me as always is my digestive system which continues to plague me with acid reflux and attacks of IBS, but I am keeping on top of it as best I can with Omeprazole and the use of Loperimide (Imodium) for the runs!!

There are other issues, left over from the years of treatments and especially the steroids – weak muscles, aching muscles and joints and painful feet. But I have learned to live with those by and large, with only occasional grumbling (sorry Bob!!).  Did give me an excuse to buy another pair of comfy trainers today!!

I think sometimes that state of mind plays a big part – we had a lovely couple of nights away at the NUT training centre at Stoke Rochford in Lincolnshire, which also has bookable hotel rooms – cheaper offers for union members! We packed a lot in and I managed to eat more adventurously without coming to major harm. I was pretty tired for a few days after, but it was well worth it and I felt I managed very well overall. Short breaks work really well for us.

I was put onto a good US website by my friend Eva – it’s got a lot of info much of which is really useful, and you can join a forum with lots of threads on different topics. I get these sent to my email address and have stopped looking at them more than once a week as personally I don’t like to spend too much time pondering my illness and also because there are differences in practice between the UK and US. as well as different names for drugs. There’s a lot of heartening stuff, and some people with a lot of knowledge, but equally, as is the case for all medical forums you must be careful about the info you take from them. There are many variations of myeloma and people’s circumstances and conditions are often very different. The site is Myeloma Beacon: http://www.myelomabeacon.com/.

So, pottering along. Many thanks to those keeping in touch and visiting etc. It makes a real difference!