[sandra56Participant]

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 and his creatinine levels are between 6 and 8 hundred but they tell us that if the SCT works it could make the kidneys work again so there’s still hope for them do let us know how your doing.       Sandra x

[sandra56Participant]

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 given a date for the actual SCT yet but I’m hoping it’s before Christmas it would be great to have it all done for then unfortunately the kidneys are still not doing much so he is still on dialysis but we haven’t given up hope yet. I must say the side effects are getting a lot worse now at the beginning of the treatment he used to get a few good days but now he just feels sick and I’ll all the time and he’s lost so much weight how are you doing with the treatment and is it working for you do you get many side effects and how do you cope.

I pray for you all every day

Sandra x

[sandra56Participant]

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 just recover and he could come of dialysis it would make him feel so much stronger and he would be able to cope with all this so much better.          Sandra

[sandra56Participant]

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

[sandra56Participant]

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, when he first went into hospital they were working at2 percent and now 9 weeks later there at 4 percent at first the doctors were optimistic about them working but now they say the chances are very slim and from a medical point of view they won’t work again, from the very beginning my husbands biggest problem was the sickness and although doctors have managed to slow it down to once in the morning ( we call it his  morning sickness ) he has to take six tablets a day for it and wear a sickness patch I haven’t come across anybody who suffered with sickness like he has, the doctors said it’s the treatment but he was sick before he started treatment that’s what he was taken to hospital in the first place. thank you for your help Rebecca I really appreciate it.    Sandra x

[sandra56Participant]

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 all new comers it would certainly take some of the stress away from feeling stupid because you can’t take it all in in the few minutes that the doctors give you thanks again x

[sandra56Participant]

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 everything the more I know the more I will be able to help him thank you again for getting back to me.

[sandra56Participant]

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 what stage he is at can you or anyone help me understand this.

[sandra56Participant]

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.

[sandra56Participant]

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 very confusing.

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