tag:blogger.com,1999:blog-2265126405631426808.post8622753017417671389..comments2023-04-30T09:21:07.144+01:00Comments on Debs' Journey with Myeloma: Impressive at the MarsdenDebGhttp://www.blogger.com/profile/14849464231835226071noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-2265126405631426808.post-32998545855975704692011-02-23T16:48:14.197+00:002011-02-23T16:48:14.197+00:00I'll let you know about the Velcade on Friday ...I'll let you know about the Velcade on Friday and don't be depending on the SCT for an instant weight loss plan, even though things were express delivery at er, well you can guess, I retained some water so came out the same weight I went in except my boots were tight! :DAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2265126405631426808.post-91032530894838893312011-02-23T14:10:02.248+00:002011-02-23T14:10:02.248+00:00Thanks for your quick response Debs. Sometimes I j...Thanks for your quick response Debs. Sometimes I just daren't ask too many questions. I think I'm scared of looking stupid or maybe afraid of what they may tell me. Unfortunately I have been one of the unlucky ones and my myeloma caused kidney failure. My kidneys are now working at 9% and on the 23rd December I had a fistula made in my left arm ready for dialysis. The fistula is now healed and ready to be "needled" as the surgeon called it. However as dialysis will take three visits a week to hospital to be hooked up to dialysis machines for up to four hours, the powers that be want to try and get me settled on velcade first before the added trauma that dialysis will bring. Ultimately it is hoped that I will be able to dialysise at home, but there is a great deal of expense to the health authority for this as they have to convert a room in my house to a "designated clinical area". Because of this my kidney consultant is very non-commital at the moment as he says they can't even consider it until they are sure I have a life expectancy of at least 2 years - nice!<br />Gosh life sometimes seems so unfair, I always thought until 2 years ago that I was fit and healthy, I've never smoked and apart from a little gin and tonic after work each night I don't really drink. Still at least, for me, I've seen my kids grow up, I had them very young so my youngest is 25, it must be even harder when they are young and you have extra worry about what could - but hopefully won't - happen.<br />Anyway I'll let you know how velcade progresses and hopefully it will be a long time before you have to find that out for yourself. I've had one session, 31 more to go and I haven't been sick yet! That's very good for me, I was very sick with the last lot of chemo, hence the 4 stone weight lose.<br />Take care<br />Delia xDeliahttps://www.blogger.com/profile/05341396262958375086noreply@blogger.comtag:blogger.com,1999:blog-2265126405631426808.post-41910478993986546482011-02-23T10:13:30.154+00:002011-02-23T10:13:30.154+00:00Hi Delia,
So sorry about Sophie...that must be suc...Hi Delia,<br />So sorry about Sophie...that must be such sad news for you :-(. I hope that things start to feel a bit better soon.<br />No, paraprotein levels are different to lightchains....I think some people with MM don't have detectable paraprotein levels so they look more at the lightchains. And I think it is similar to paraproteins in terms of levels too. Mine at 50 were considered quite high but yet I had no end organ damage (yet some people have it with a paraprotein of 10+)....the same goes for lightchains in that you can have high readings but no symptoms. But I am no expert!! I know some people follow this blog who have lightchain myeloma so perhaps they can help me out here???<br /><br />I'm trying not to really think about the transplant anymore.....I just don't know when it will happen so somehow need to get it out of my head for the time being. Most people in the UK only seem to be in for 2-3 weeks but I will definitely bear in mind that it could be longer!! And fingers crossed for the weight loss...at the moment I have gone up a dress size and feel totally bloated the whole time!<br /><br />Take care and I hope that you are ok<br />Debs xDebGhttps://www.blogger.com/profile/14849464231835226071noreply@blogger.comtag:blogger.com,1999:blog-2265126405631426808.post-60631276104739449342011-02-23T10:04:04.632+00:002011-02-23T10:04:04.632+00:00Debs perhaps you can help me with some advice! I h...Debs perhaps you can help me with some advice! I hate asking questions at the hospital as I always feel like I'm being a nuisance.<br />My specialist keeps talking about my light chains, is this the same as your paraproteins? Because of the figures they quote me I can't believe it is, (my light chains are currently 2300, although when I was first picked up they were over 7,000 and they only ever managed to get them down to 1,000) I had my stem cell transplant late 2009 and unfortunately only got 16 months in remission/plateau, but don't let that worry you, that was extremely rare I'm told, some people go as long as 6 years in remission.<br />For my transplant yes, they did have to see that I had stopped responding to the dexmathasone (I think) steroids, thalidomide etc and the with the transplant I spent 5 weeks in total in hospital in isolation. I think previously you mentioned you only expected to be in for 3 weeks - be prepared for this to be longer. The upside for me was I lost 4 stone on the treatment and it's all stayed off for over a year! However I have gone back on steroids a couple of days ago and had my first shot of velcade on Monday - the next one being tomorrow. So who knows what will happen now.<br />Sorry if this message seems rambling, I'm having a bad day, made worse by the fact that my beloved little cat Sophie, who has been great comfort to me when I'm ill, dissapeared on Saturday night. We went to put posters out yesterday to see if anyone has found her and it transpires she was run over and killed outside my house on Saturday night while I was at a wedding reception. So as you can imagine tears all round for everything at the moment.<br />Take care Delia xDeliahttps://www.blogger.com/profile/05341396262958375086noreply@blogger.com