• August 14, 2016 /  Myeloma

    Hi, I realised I haven’t posted in a while. There’s not a lot to update you on.

    After my levels dropped to normal they decided to lower my Revlimid dose from 25 to 15 mg. My light chains then rose slightly to just above normal, but have remained stable there for a couple of tests, so we’re hanging on to see if they will stay there. I don’t really want to go back up to 25, although tbh I haven’t noticed any major difference in how I feel coming down by 10.

    I have just restarted my vaccination schedule and in fact am sitting here typing with sore arms, feeling a bit woozy from 3 hefty jabs.

    I discovered that information about a test for the speed of bowel transit I had done last autumn had not got through properly to anyone, including me – it was done by a locum at the hospital who subsequently left. Gastroenterology sorted it out really quickly. My transit time was incredibly quick – I have the runs and cramps every morning. I have just started some binding medicine called Questran and today – no runs! Nothing in fact! It does taste a bit yucky and I’m a bit worried about getting constipated, but it should help with the absorption of food and nutrients. I’ve lost a bit of weight recently, so hopefully that will stabilise.

    This autumn, if my health is OK, I’m hoping to learn how to self-administer my immunoglobulin. The usual way is via a couple of pumps you insert into the stomach area, but now there is a slow (10 min) injection you can do. I’ll have to get trained at Leicester, but then I’d do it every other day or two, probably in the evening. It would mean that I get a more equal dose over time. Atm I have it IV every three weeks so my levels go high and then trough. I’m very glad to have it, as I’m sure it’s prevented infections.

    I’m almost weaned off citalopram now – I was put on it when I had my transplant, when one of the drugs seemed to make me a bit weird. It has various interactions with other drugs I take, so I decided to come off it, but took it very slowly. Just taking a very small dose on alternate days and hope to be right off it in the next couple of weeks.

    I’m still very tired and have various irritating side effects. I was really hoping to feel a bit better, but as my consultants say, I have been very heavily pretreated now and Revlimid is strong. I’m trying to just go with the flow and rest when I need to. Bob has retired now and is helping a lot with lifts etc, so I don’t have to drive too much.

    Take care all of you with myeloma.

     

    Tags: , , ,