[sandra56Participant]

I would like to tell you my husbands story, Steve was taken ill in April he was constantly sick for two weeks in that time we saw three GPs they said it was a tummy bug so in the end I just took him to the hospital where he was admitted, we was told the next day that he had kidney failure and needed emergency dialysis, three days later after them doing a lot more tests to find out why his kidneys had failed they told us he had MM and that’s what caused it and that it had pitted the base of his spine and base of his skull and that he had presented at thirty six thousand light chains, he has started velcade and Dex, can anyone tell me is that amount of light chains high and will his kidneys make a difference to his treatment I just want some straight answers the doctors are very evasive and won’t even tell me what stage he’s at they just say it doesn’t. Matter if any body can help with any info I would be very grateful.

[ellenModerator]

Dear Sandra, My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK. I am sorry that, as yet no one has replied to your post, I hope this doesn’t put you off posting on the forum in the future, it is generally very supportive.

I am sorry to hear that your husband was diagnosed so late and that his kidneys had failed. A light chain reading of 36,000 is high and is likely to have caused the kidney damage. Myeloma UK has an Infoguide on Myeloma Kidney Disease which I hope helps to explain things for you. I have provided a link but please let me know if you would a hard copy and I can post one to you.

http://www.myeloma.org.uk/information/myeloma-uk-publications-list/symptoms-and-complications/myeloma-and-the-kidney/

Velcade is a very effective treatment and I hope it is getting on top of his myeloma and reducing his light chains effectively.

Myeloma can be staged but this is only done at diagnosis and tells the haematologist the amount of myeloma (or tumour load) the patient has. It is not particularly useful for determining what treatment a patient should have or what the prognosis is likely to be. The doctor is, therefore, correct in saying that staging in myeloma isn’t particularly important. However, having kidney failure will make a difference to what treatment he gets – Velcade is recommended for those with kidney problems rather than a thalidomide based combination, so your husband is getting what’s best for him at the moment.
I hope this has been of some help but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332, alternately you can email directly to askthenurse@myeloma.org.uk and I or one of my colleagues can clarify things for you further.

With best wishes

Ellen

• This reply was modified 8 years, 9 months ago by  ellen.
• This reply was modified 8 years, 9 months ago by  ellen.

[andygParticipant]

Hi Sandra.

I’m also sorry you haven’t had any replies though I must admit I don’t frequent the forum as much as I used to. I should try harder.

As Ellen has said myeloma can and does cause kidney damage by blocking the fine tubes of the kidneys. Hence the need to drink two to three litres of fluid a day, mainly water, to keep the kidneys flushed.

Velcade is the drug of choice for patients with kidney damage because it’s easier on them than the other front line treatments.

I’m sorry I can’t help with much information about light chains as I don’t know much about them as my myeloma is measured by paraproteins at the moment but the treatment is, as far as I’m aware, the same. I’m sure Ellen will put me right if I’m wrong.

I do know staging is rarely mentioned and as Ellen says has not much influence in the treatment of Myeloma. The only time I come across questions about what stage I’m at is when I’m getting travel insurance quotes!

Every day is a gift.

Andy xx

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