[lauraParticipant]

Hello

This is my first post. My husband was diagnosed with Myeloma on September 19th.  He had a kappa light count of 43, 800. So it is stage 3. He is on Velcade and Bendamustine. He has 2 more cycles of chemo then if they can get the count down to”0″ he will have a stem cell transplant in April. We are still in a state of shock as he has never been ill. Its been a very stressful time like it is for everyone . How life can change in the blink of an eye. What I want to know is, is there anyone out there who has had a high kappa light count like my husband .

• This topic was modified 9 years, 4 months ago by  laura.

[ellenModerator]

 

Dear Laura

Thank you for your post, my name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.

 

I’m sorry that , as yet, you have not received any replies, please don’t let this put you off posting on the forum, it may be that no one has experienced the issues that you describe or that you post has been missed by forum users amongst other new posts

 

The kappa level of 43,800 is very high and it is hoped that the treatment that your husband is on will reduce this rapidly. I hope that one of the discussion forum users will come along to share their experiences but if you have any questions that I can help with please do contact me on the freephone Myeloma Infoline on 0800 980 3332 or by email to askthenurse@myeloma.org.uk

 

All the best

 

Ellen

 

[christaylorParticipant]

Hi, Sorry to read about your husband and fully understand how you both must feel also how life can change so quickly.

I did not have that reading of kappa light chain figure mine was approx 1200,  the reason why I thought to reply is that most people quote Para protein levels and rarely kappa light. I am no expert in any respect of this but my thought is that having Non Secretory MM shows up with kappa light testing ( please correct me if wrong ).

Like I mentioned mine was approx 1200 before diagnosis and in that time caused considerable bone damage, however my treatment consisted of 7 cycles of oral CDT and the level dropped rapidly hopefully your husbands will drop rapidly.  I am also getting ready for SCT it was put back a month due to a blood clot in the leg.

Their is a web site called Myeloma Beacon, it is a USA  forum and my wife has read about patients whose kappa light chain levels are like your husband and higher, so you may wish to check it out.  I would only say that some of the drugs and readings differ in respect of being American.

Regards Chris T.

[VickiParticipant]

Hi laura,

My partner Colin’s light chains were 35,000 when first diagnosed. Until your post I hadn’t seen anyone else anywhere near that, so welcome to the club! Relatively Colin’s pp’s were lower at 17 when diagnosed. They got his light chains down to 750 after 7 or 8 cycles of revlimid, Des and cyclophosmahide. He had a successful transplant in 2012. He was then in remission until June last year when the light chains started to rise again. So now he is on treatment again.

However the good news was that they could get them down. Like you we were in a state of shock as we’d never heard of myeloma and he hadn’t been ill. As was so well documented on here! Please ask any questions I will do my best to answer. Colin was in and out of hospital with infections but the team are brilliant as they have seen it all before!

I don’t thin ok we will get over the shock of it (cancer wasn’t in the game plan, like so many) but you do learn to live around it and try to take it on the chin.

Best of luck to both of you, this forum is a godsend by the way it helped sooo many times 🙂

Vicki and Colin x

[jillsParticipant]

Hi Laura,

Another one here – my Mum’s light chains were 10,000 on diagnosis back in 2007 (she was 77) but no bone damage – they have gone up and down with various treatments and at the highest were about 19,000 but currently around 9,000. The concern is about kidney damage but her kidneys are fine – even at 85 so it just shows this is a very individual disease. As Mum is older she could not have the more aggressive treatments like Bendamustine or a STC but she is doing OK on the various tablets, there are lots of treatment options now.
All the best to you both,

Jillx

[VickiParticipant]

Thanks Jill Very much hope that your Mum continues to do well. Its always good to hear the good new s stories as they are encouraging to the rest of us!

Vicki

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