tallulah55 posted an update 10 years, 9 months ago
Hi, I’m Nicki and this happy pic was taken 2 years ago with my husband Kevin. we were relatively carefree then – he was 4 years free of kidney cancer ( both kidneys!) and we were starting to look to the future with more certainty. Then a week before Christmas 2012 when we should have been celebrating 5 years survival of this Kevin’s routine diabetic blood tests show high levels of calcium. As I used to work in an NHS pathology lab testing for cancer cells i automatically thought that the kidney cancer had spread to the bones ( that would have been a very difficult diagnosis) but he was eventually diagnosed with a rare sort of lymphoma, Waldenstroms Macroglobulinaemia – it gets to roll off the tongue! But he was very well and I guess in shock and denial to some degree and it can be a slow growing indolent cancer. However as it often is apparently the diagnosis was wrong, the IgM paraprotein actually that characterises WM was in fact a rare form of multiple myeloma -a whole new ball game! i had become very pally with the WM forum and now felt we should look for a new ‘club’ as clearly we no longer belonged in that one despite the two diseases being very similar.So here we are and life has taken a very course over the last few months. Kevin’s paraproteien of c. 30 suddenly rose to 57 when he contracted pneumonia following catching flu on a long haul flight and he was very ill, very anaemic and with rocketing levels of calcium.No bone pain or lesions and remarkably – no damage to his remaining -8 of his single kidney. You have to be positive. !0 days in UCHL under the WM expert and now back under the excellent care of Prof. G Jackson at the NCC at The Freeman in Newcastle. Kevin is on his third cycle of CTD, the paraprotein is down to 9 and we are hoping there will be one more cycle before seriously considering ASCT. so pleased to have eventually discovered this site – my bedtime ipad activity has been reading the posts over the last week or so instead of ipad shopping in bed and I’ve picked up so much that shows we’re not alone, even though this is a club none of us want to belong to I guess. I’ll be posting more over the next few days but thought I should introduce us. Kevin is probably very sensible – he only looks at info when really necessary, i, on the other hand, have to know everything going. I especially find the Myeloma Matters newsletters informative and also like the more International Myeloma Beacon. Anyhow, internet shopping awaits – and then onto read more about ASCT.