Since I last wrote, I have begun to self-inject my immunoglobulin at home. I had to go to Leicester for 3 training sessions and a test. It wasn’t hard, although I still have to think about the procedures. I have a fridge full of immunoglobulin (IgG) and boxes of various needles and other bits and pieces. It takes maybe between 20 to 40 mins depending on whether I do one bottle or two. The actual injection is under the skin in my stomach and involves pushing 10ml liquid in over about 10 mins. This does cause funny bumps to come up but they do go away. One or two have caused bruises (probably poor technique), but mostly I’m just left with little pin pricks.
So all that is good as it saves a morning in the hospital and it saves them patient time. I am a guinea pig for Leicester who have organised it and now want to make use of my experience to expand it. I am thinking about the printed info they give you, which I think could be improved.
On the Questran – I have been messing about with the dose to try and get the best results. On my first week I went by the amount advised by the doctor, but this proved too much and I was constipated. I took couple of days break to ‘clear the decks’ as it were and started again. Now I have more or less got it right and tinker slightly as needed. It’s impossible to get it spot on day after day as let’s face it, how many people’s bowels do that anyway? It depends on things like what you’re eating and drinking for a start. I’ve regained a bit of weight now I’m absorbing more nutrients. I have slightly rejigged when I take some meds, as Questran can affect them, so I take it before bed with nothing else. So far it doesn’t seem to have affected my disease levels, and we’ll take some readings of my vitamin levels every now and then to check they are still OK, as it can also reduce A, D and folates.
I eventually got off my citalopram. It has meant I feel emotions more – I hadn’t realised how much it affected them. I also think it was covering my peripheral neuropathy a bit, as that seems a little worse. But it conflicted with several other drugs I take, so it’s best to be off it. If I feel a bit anxious or can’t sleep I can take half a diazepam – I do this perhaps once a week or two.
I saw my Northampton consultant yesterday. My kappa levels apparently went up a little in August but then came down in September, so given that they can be affected by dips in health that’s OK. The last levels were 40.8 August and 32.3 Sept. September’s is pretty much where it’s been for a while. The measurement isn’t 100% accurate, but I don’t know what that means in plus or minus terms. The top of a normal level is 19, so that’s pretty good. I have often been up into the 100s and when I was diagnosed in the 1000s! My other blood counts are OK, but they were still waiting for the kidney, liver, folates etc.
I have decided to see if, with the help of the hospital, we can set up a support group for myeloma patients. I know Myeloma UK would help and I talked to someone about it at the hospital. It would only meet say once a month. More news on that later, after I’ve spoken to the relevant people at the hospital.
The conference Bob and I went to was interesting. My N’ton and Leicester consultants were a bit horrified when I reported on what was said by some of the speakers. For example it was suggested that kappa/lambda ratios weren’t really that important unless there was renal involvement. This is controversial. However, mine have almost never been normal. What does that mean? Is it that an indication that even when I’m in remission, I’m not really? They also didn’t like allo transplants – too dangerous! This was roundly disputed by my Leicester consultant. I would agree with her – I don’t think there are any drugs which could have saved me from rising levels before mine and the unit has done lots of transplants safely. Many people get a good length of remission from them – I didn’t, but at least have put the brakes on. I think we have to recognise that different hospitals/consultants will take different views. Also it’s quite difficult to do large scale research on myeloma, given how individualistic it is. The samples are often quite small.
We also heard about new drugs, which we may or may not have access to in the future, depending on govt funding. I asked quite a few questions and made some points. There was a very poor presentation by a nurse. However, I did pick up a few useful booklets and have started doing exercises from one of them.
I’ll be updating some links etc soon, as the blog is a bit out of date atm. This organisation ran the conference (for those who don’t know it): https://www.myeloma.org.uk/