[jennalineParticipant]

Hi again, having gone through a lot of the posts I feel as though I am the only one on here that is suffering from Light Chain Myeloma===am I right?===if not perhaps you can make yourself known and swap knowledge.===Jenny

[HelenParticipant]

Hello Jenny
There are many of us out here with light chain myeloma, I was diagnosed nearly 2 years ago and am now in full remission, I had RCD as induction chemo before SCT 17 months ago and am currently on maintenance therapy with Revlimid. I'm not sure how I can help as you seem a bit further along the road as far as treatment is concerned.
Love Helen

[peggyParticipant]

I too have light chaiins…….in fact aI thhink that there are a fair number of us on this forum. I TOO had RCD but am onnly just recovering from my SCT which I had over Xmas ….truth be told I,m still feeling pretty rough. So neither have i reached the point of randomizattion either.

All the best meanwhile,

Peggy

[scott9Participant]

I've got light chain myeloma as well. I've had it now for over two years. I got partial remission for about 1 year and I'm on Bendamustine now to try to get the light chain readings down again.

All the best

Scott

[terryl1Participant]

Hi Jenna, I have light chain only kappa restricted myeloma which represents about 15% of myeloma patients. Like you, I often search for true light chain only patients who don't have traditional M-spikes. My SPEP's are completely normal but the FLC assays tell another story. Just prior to my starting treatment in May, 2012, my kappa light chains rocketed to 16,200 mg/l. Thankfully, my kidneys were not damaged and my treatments have knocked my FLC's to almost normal (about a 99.5% decline) and my marrow is clean based on a BMB just before Christmas. I live in the US and was admitted to a special clinical trial for newly diagnosed myeloma at our National Institutes of Health near Washington, DC. I received 8 cycles of carfilzomib, Revlimid and dexamethasone. I am now on low dose Revlimid for 2 years. There are a few light chain only patients in the trial. One point of the trial is to see if the protocol can top the standard induction with SCT regimen which is usually the route for younger patients. So far, so good but only time will tell. Hope to hear from you. Regards. Terry

[teds31Participant]

Hi I dont want to hijack this topic but perhaps someeone could help me. I have had smoldering MM for about 6 years and the last few visits to hospital they said my "light chains" were showing a upward trend and they asked me to attend every 8 weeks instead of every 3 months,they have been fairly low so far but now are at 928??? which they say is the highest they have ever been, my PP is 13 and has always been about that. I thought that the PP was the one to watch and never knew anything about Light chains,can any one explain why Light chains are important and why. Ted

[terryl1Participant]

Hi Ted, First, I hope you are able to smolder forever! You appear to have a type of myeloma which is the easiest to track. You have a traditional M-Spike which is what the intact immunoglobulin (paraprotein)is usually termed in the SPEP or serum electropheresis. Your disease level can be tracked this way. Also, your disease may generate light chains which are part of an immunoglobulin. They show up in the blood and can be tracked by the freelite assay. They can also be excreted into the urine and show up in a UPEP or urine electropheresis as Bence Jones proteins. I assume the 928 you quote is mg/l. Some labs use mg/dl. The trend is very important with light chains and my doctor has told me that a significant increase would be 100mg/l after two serial FLC assays. Where did you start out and over what time frame? Do you have CRAB symptoms (i.e. high calcium, high creatinine, anemia or bone involvement)? People like me, oddly enough, don't have M-Spikes like you do. It is harder to track our disease levels and makes the initial diagnosis harder still. Light chains are also very important because they are able to show a response to treatment almost instantaneously, whereas it takes more time for the M-Spike to move. Also, your light chains are not simply a representation of your myeloma tumor burden but also represent the immune system in general. In other words, things other than myeloma can make them rise. This is why serial freelite testing is important in addition to SPEP's, bone marrow biopsies and PET CT's or other imaging tests. Good luck with everything! Terry from New Jersey

[AlexBParticipant]

Me too. Kappa light chains. No m-spike. Diagnosed last year, though my symptom history suggests its been there a good old while.

My light chain measures were 1,300 at diagnosis – which was causing me tremendous bone pain, multiple fractures, anaemia and low neutrophils. Now, at about 600 I seem to be nearly asymptomatic.

Goes to show that the scores are a personal thing. Others talk of light chains 10,000+, but I think that would almost certainly kill me!

[BabsParticipant]

Hi Jenny,
I too have light chain myeloma, diagnosed July 2011, 6 courses of RCD from July to November and SCT March 2012, currently in full partial remission!
I was randomised to take both revlimid and Zolinza but was very ill and so stopped after 6 weeks and am now currently on day 13 of just taking revlimid as part of the maintenance regime.
Love Babs

[terryl1Participant]

Hi Alex, glad to hear you are doing well. What type of treatment got your disease under control? As I indicated, just prior to treatment, my kappa light chains exploded to 16,200 mg/l. They are now about 45. Believe it or not, they can approach almost 100,000 in some patients. I also understand that the lambda light chain can be more deleterious to the kidneys than the kappa type, although the latter is bad too. I was advised to drink plenty of water each day and I have my kidney function monitored monthly in the clinical trial. Good luck! Terry

[terryl1Participant]

Great news, Babs! Keep it up. Terry

[teds31Participant]

Thanks Terry, Alex and Babs, looks like we could start a whole new forum on Light Chains alone. Dont quite get all of the info but I will read through and get back if I need more help. When I had my last visit to hospital they told me the light chain amount as 238,which was very low from 928, and then he said "sorry we are using Siemens scale " and he then reajusted it to 928 as it was the previous visit, so maybe we could be using differant scales, any one know for sure. Ted.

[terryl1Participant]

Hi Ted, I don't understand what they were telling you about the differences in the figures….beats the heck out of me! It is my understanding that the figures are pretty universal. Try checking out the Binding Site's website for more info. on the freelite test. It is UK-based. Also, one very, very common problem which causes a lot of angst for patients is that some labs report light chains in mg/l and others in mg/dl….obviously, one must be aware of this practice. Good luck. Terry

[teds31Participant]

Hi, I didnt understand the scales either ,but he did appear to be the "younger" of the team (if you know what I mean,we have all been there) but how he got from 200+ to 900+ I dont know, I wanted to ask other questions but this put me off and I just let it go and left. I will ask the questions next time as its only 8 weeks to my next appointment,hopfully with a differant doc.Ted

[jennalineParticipant]

Sorry that I haven't replied to any of my mail this week but I haven't exactly been feeling too great!!! but on the way back up again. This Wednesday I am back up at Kings college Hosp to have my bloods done, see my specialist and pick up my 4th cycle of my maintenance plan. I soo wish I could go back on Bendamustine as it gave me 2 1/2 years remission. But they have promised me that If the Revlimid and cyclophosphamide doesn't do the trick they will try to get me back on Bendamustine. Fingers x'd. Good luck to all you out there , and as Tom says "onwards and upwards" Jenny xxx my love to all of you.

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