Confursed about Freelite test results

Hello. I am a visitor from the past back for more info. My husband has IgG Lambda type SMM. I am still unsure if SMM or MGUS, but doc says SMM.

His m-spike is 2.2, IGG = 2.6, plasma cells are 6% on flow cytometry, and 13% on bone moarrow morphology,and 10% on Immunohistochemical analysis (so which is right?? I still have no answer to that).

His M-spike has held fairly stable the past year since dx. (from 1.8 to 2.1 to 2.2, where it has been for 6 mos).IgG went from 2.5 to 2.6 in one full year.

Doc ordered a Freelite test, and SPEP before our upcoming visit. Our lab (Quest Diagnostics, and we have no choice, having an HMO), continually screws up the tests. First time SPEP was ordered they didn't quantitate the IgG, IgA, or IgM. Then they did. This time the did, but only the IgG! Also, they had no idea what a Freelite test was.

SO HERE'S THE QUESTION: Isn't a Freelite test supposed to show : Kappa light chains, Lambda light chains, AND a ratio or the two (which I think is the biggest prognotistic indicator??).  His test only showed Kappa. (and a low results at <0.01). Since he has IgG Lambda, is this result even helping us at all?  What could be the reason (besides lab screwup again) for not having the Lambda and ratio on the result??

And what does a lower than usual Kappa level mean to someone with Lambda IgG?

(BTW Flow Cytometry showed 0.11% kappa light chains, and 5.72% lambd light chains, and that was 1 year ago this month).

Thanks for you help, I've been all over the net, and can't find any info about what should or should not be on that test! 

 

 

 

 

 

On 10/3/2007 1worriedwife wrote:

Hello. I am a visitor from the past back for more info. My husband has IgG Lambda type SMM. I am still unsure if SMM or MGUS, but doc says SMM.

His m-spike is 2.2, IGG = 2.6, plasma cells are 6% on flow cytometry, and 13% on bone moarrow morphology,and 10% on Immunohistochemical analysis (so which is right?? I still have no answer to that).

His M-spike has held fairly stable the past year since dx. (from 1.8 to 2.1 to 2.2, where it has been for 6 mos).IgG went from 2.5 to 2.6 in one full year.

Doc ordered a Freelite test, and SPEP before our upcoming visit. Our lab (Quest Diagnostics, and we have no choice, having an HMO), continually screws up the tests. First time SPEP was ordered they didn't quantitate the IgG, IgA, or IgM. Then they did. This time the did, but only the IgG! Also, they had no idea what a Freelite test was.

SO HERE'S THE QUESTION: Isn't a Freelite test supposed to show : Kappa light chains, Lambda light chains, AND a ratio or the two (which I think is the biggest prognotistic indicator??).  His test only showed Kappa. (and a low results at <0.01). Since he has IgG Lambda, is this result even helping us at all?  What could be the reason (besides lab screwup again) for not having the Lambda and ratio on the result??

And what does a lower than usual Kappa level mean to someone with Lambda IgG?

(BTW Flow Cytometry showed 0.11% kappa light chains, and 5.72% lambd light chains, and that was 1 year ago this month).

Thanks for you help, I've been all over the net, and can't find any info about what should or should not be on that test! 

 

 

 

 

 

Hi- I am not sure how much help I can offer, but I can tell you that we have the same problem with Quest Diagnostics.  Both my husbands Hematologist and Transplant doctor have said the same thing. They have meetings with them and they don't necessarily run the correct tests or report them in the same manner any two times.  As far as the urine goes my husband's hematologist goes by total protein. 

I know that isn't a help.  I wish there was a way to make Quest Diagnostics be more responsible.  They are playing with people's lives.

Best of Luck,

Carolynn

 

I had a feeling it was the lab.  Our oncologist has never done a urine test, only SPEP, and this is the first Freelite. Quest has screwed up the SPEP almost every time, either not quantitating anything, or not quantitating everything. Now this with the Freelite. We just want a test result that is right, so that we can decide to drop back to visiting the doc every 6 mo or year vs 3 mo. The anxiety every three months is really, really wiping us out. Our doc is also very matter of fact about the lab screwing this up, and we're not. We feel that if our insurance is paying, the test should be done right. However, having an HMO, we can't go to another lab!

That must be very, very frustrating. My wife has myeloma and we are US citizens living in Canada. She receives a full blood panel every month (done by the lab in the hospital) and it makes it very easy to track her progress. We have thought of moving back to the US, but the only thing stopping us is the healthcare system. We're afraid she won't get the proper treatment and/or be completely denied coverage from any insurance company due to her pre-existing condition. So ... unless a system like Ms. Clinton's which will guarantee that no insurance company can deny coverage we will have to stay north of the border. Very frustrating and isolating for us.

Best of luck to you and your family.

Craig

 

On 10/5/2007 1worriedwife wrote:

I had a feeling it was the lab.  Our oncologist has never done a urine test, only SPEP, and this is the first Freelite. Quest has screwed up the SPEP almost every time, either not quantitating anything, or not quantitating everything. Now this with the Freelite. We just want a test result that is right, so that we can decide to drop back to visiting the doc every 6 mo or year vs 3 mo. The anxiety every three months is really, really wiping us out. Our doc is also very matter of fact about the lab screwing this up, and we're not. We feel that if our insurance is paying, the test should be done right. However, having an HMO, we can't go to another lab!

Honestly, I don't think you will be able to find another lab. Quest is pretty much the largest lab and they have boughten out most smaller ones.  The only thing that made a difference in this round of labs is that my husband's doctor has been having meetings with them and becomes very angry.  At my husband's appointment on Monday he said last time he spoke with them he told Quest that he was going to tell everyone of his patients to sue them.  He gave them my husband's name specifically.  When my husband first became ill, the changed the lab value in the computer and no one knew he had cancer for 3 months.  They just treated him for renal failure, but he wasn't getting better.  His Beta-2 microglobulin at the time of diagnosis was 26.

Good Luck,

Carolynn

 

Me again! Guess what! It wasn't the lab after all! It WAS the onc office. I got a very, very nice lady (thanks, Edna!) from Quest customer service on the phone, and she told me exactly the Quest codes the docs office had ordred. I told her what tests he wanted, and she gave me the correct codes.  At his office, he just writes the tests he wants, and the receptionist fills out the lab slip with the codes. Well, that's where the mistake was!

I called the Onc office to tell them I was chaning our next appt until after we've got the correct test results. The secretary claims these are the tests he ordered, but they're not. I know what he's looking for. He's ordred the same quantitative analysis and SPEP every time, and every time, he's looking to quantitate all 3 (igG, igA and igM). Freelight is new, and she said he only wrote 'freelight test' on the sheet, so she assumed this meant 'freelight kappa only', which is wrong. My hubby has lambda light chain disease, so kappas tell us nothing. We need both and the ratio.

I asked for a new slip to be sent, and gave her the exact codes. Then I asked about getting a copy of his chart, and she didn't sound too happy about that. She asked if it was for our own personal use or for a second opinion, and I told her 'both'.! Of course, there's another form I have to fill out for that, which she claims she'll send me with the lab slip. We'll see!

If anyone needs Quest codes, I've got some of them, and one of the docs that I bill for (I have a medical billing business) told me that he has their whole book of codes, and will gladly help me out by looking up anything I need... I also found out that most of thier codes are available online.

I am glad you got to the bottom of it. In our case it is the lab!

Good Luck,

Carolynn

Hi, My husband is having the same problem with Quest. They don't quantify the test results properly and I was told it is because the correct codes aren't being used. Could you please provide me with the codes?