Hi peter I’m so sorry I called you Andy I don’t know why I did I think I’m starting to loose my marbles but that message was for you and I forgot to ask will you be having a SCT and why do doctors from differant hospitals all seem to talk in a differant lingo about the same illness are kidney doctors talk about kidney function and my husbands is 8…[Read more]

Hi Andy I’m not sure why some doctors talk in light chains and some in para proteins or what the difference is, but the good news is his light chains are down to 149 considering he presented with 37 thousand that’s great news he starts his 6 th cycle of chemo on Friday and then they have booked him in for harvesting 28th September they haven’t…[Read more]

Hi everyone just wanted to give you a update on my husbands progress he is just about to finish his 4th cycle of treatment only two more to go the side effects are getting a lot worse but on a good note his light chains are down to 470 unfortunately the kidneys are not doing anything but we live in hope and pray every day, as I know if they would…[Read more]

Ok thanks for the info I will keep you posted of his progress he will finish his third cycle on Monday and then we see the consultant on Thursday so hopefully I will have some positive news to tell you   Sandra x

Hi Rebecca

do you know at what level the light chains have to go down to before they will consider a SCT and also when do you know your in remission, strangely enough my husband is more upset about his kidneys than the MM, he absolutely hates going on dialysis and says it’s going to ruin our lives if he has to do it for the rest of our lives,…[Read more]

Hi C

thank you I will certainly take your advice and get the support I need to help me understand what’s going on, as the ten minutes we spend with the doctor at clinic using words I don’t understand is not helpful and is very frustrating you think they would try and help us understand things better, I think they should run induction courses for…[Read more]

Thank you so much Rebecca you have helped me so much explaining things in a way that I can understand, and made me feel as though I’m not alone in all this, unfortunately my husband is just sticking his head in the sand and doesn’t want to know any information about his condition apart from the basics, but I’m one of those that needs to know…[Read more]

My husband has not long been diagnosed with MM and kidney failure and anaemia, the doctor said he presented with thirty six thousand light chains but has never mentioned what his PP level is, do you know if this is high how are we supposed to understand everything when you can’t get the doctors to just give you straight answers they won’t even say…[Read more]

When my husband was told he had myeloma he presented at thirty six thousand light chains does any one know if that is excessively high.

No unfortunately they haven’t made any recovery and the more time that goes by the les likely that they will recover, even though he is responding to the chemo and his light chains are going down they also told us that he wouldn’t be able to have a kidney transplant because of the myeloma but he will be able to have a stem cell transplant it’s all…[Read more]