Lab results are discussed frequently a lot here on the Beacon and I do not feel this is a bad thing. But when I get involved with lab result discussion threads, I often stress my belief that it is important to always go over the results with your doctor to put the context around the results as to what they mean for your particular case, and that the comments and opinions about lab results from forums like the Beacon and even the Beacons medical advisors are not a substitute for seeing the doctor treating you about lab results.
Last week I saw my stem cell transplant doctor and have a good example of why this is true. In a recent thread about light chain lab results and the kappa/lambda free light chain ratio, I made this point and also emphasized not to get to worried or wrapped up about the mathematical nuisances and effects when dealing with dividing large small into large numbers.
I was diagnosed with IgG kappa myeloma 4 years ago in April 2009. I started relapsing earlier this year as evidenced by my kappa light chain ratio starting to rise exponentially in a relatively short period of time. It has been in the normal range, below 19 mg/L, in the time since my stem cell transplant until earlier this year. After failing to screen for a Kyprolis trial, it was decided to try the Velcade-dexamethasone drug combination that worked so well 4 years ago that put me into a near complete remission even before my stem cell transplant.
So I started the treatment and with that came increased free light chain testing to monitor progress. Some of my last kappa/lambda light chain ratios have been over 3000 mg/L, and one could not even be calculated because the lambda was zero (you cannot divide zero into any number to get a ratio). My IgG levels have been much better, though – just barely above the 1600 mg/dL of the high end of the normal range. And my M-spike has been relatively good, about 1.6 g/dL (16 g/L) , well below the 4.6 g/dL (46 g/L) level at my initial diagnosis 4 years ago.
Over three months on Velcade dexamethasone, my kappa levels bounced between 2000 mg/dl and 3000 mg/dl, not getting any worse, but not getting any better either. It was clear that Velcade dexamethasone was not working as well as it had 4 years ago during induction therapy, where every lab test only showed things were getting better. So at the beginning of this month I was switched to pomalidomide (Pomalyst, Imnovid) and my dexamethasone dose was increased to 40 mg week from 20 mg a week. I do not know how this is working yet.
I decided to make an appointment with my stem cell transplant doctor to go over this and get his opinion, as he deals with a lot more myeloma patients. Another reason I wanted to see him was that this most recent experience with lab results during my relapse seemed and felt a lot different than my experience 4 years ago during my induction therapy. Back then I remember we were looking more closely at the IgG levels and I do not remember kappa light chains or the kappa light chain ratio being such a big issue or something that was of much concern. And my M-spike had been much higher, now it was not nearly as bad. I made a point to bring this up with my stem cell transplant doctor who is in my HMO at my appointment.
So appointment day came and I brought up the free light chain labs and the high kappa levels. He brought them up on the computer, paused and looked at them for about 5 seconds and said “It appears you have developed a new myeloma clone”. He brought up the labs from 4 years ago at my initial diagnosis and, sure enough, my IgG levels where much higher, over 4000 mg/dl (4 g/dL, 40 g/L), I do not remember the exact levels, and kappa was below 100 mg/L. And again my M-spike was much higher at 4.6 g/dl. Now I had reasonable IgG and M-spike, but kappa light chain was far higher. Something was clearly different about this relapsed myeloma clone that the one that was predominant 4 year ago at my diagnosis. Knowing this provided some important context about what these lab results meant for me:
This could explain why the Velcade dexamethasone was not that effective of a treatment for my relapse. This clone survived that treatment 4 years ago.
This clone also survived my stem cell transplant 4 years ago.
While this clone may have been suppressed for a while by over two years of Revlimid maintenance, therapy, that had stopped becoming effective as well.
My doctor said that a clone that predominantly expresses itself producing high levels of kappa protein is not necessarily treated any differently at this time than a clone like the predominant one I had 4 years ago. I had a FISH test done just a few months ago and there were no high-risk chromosomal deficiencies found, which is really good. The FISH only tested for a subset of known high-risk deficiencies, and not all deficiencies. It is likely a deeper chromosomal analysis would have found some change. It does appear though that this clone is more refractory. Knowing all this put important context around what I was dealing with now and changed our discussions about potential future treatment options and time lines:
For one we need to track the progress of disease progression differently with this clone with an emphasis on free light chains and less so on M-spike and immunoglobulin lab results. Also, kappa light chains make kidney health more of an issue to watch closely.
A second stem cell transplant may be an option I need to consider sooner rather than later if we cannot find a novel agent therapy that works soon. But do not expect as good as results as my last one that put me into complete remission for a while.
We really need to keep track of advances in new myeloma drugs like immunotherapy that work differently than the proteasome inhibitors and immunomodulatory agents I had been using so far. Start looking more closely at clinical trials that would be available to me, especially if pomalidomide or Kyprolis do not work.
Look at adding cyclophosphamide to my current pomalidomide and dexamethasone therapy.
Would I have gotten all this good and important context about these lab result from anonymous people in an Internet forum who do not have complete access to my medical history and lab results? Not likely.
Again, I believe that it is not a bad thing to discuss labs on the Beacon, but is it not a substitute for seeing the doctor treating you about them and getting their analysis about what they mean for you. On the other hand, my regular oncologist made no mention of a different clone when I saw him last. Maybe he recognized it and did not say anything, and maybe he did not. I know he has a far high case load of cancer patients in general and, while not totally unfamiliar with treating myeloma, he has a lot less patients and experience with it than my stem cell transplant doctor (which makes a case for seeing a myeloma specialist and getting second opinions).
I know this a really long post, but it is a dex day for me.
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Importance of seeing treating doctor about lab results
Last edited by Eric Hofacket on Tue Sep 29, 2015 12:10 pm, edited 1 time in total.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Importance of seeng treating doctor about lab results
Sorry to hear about the issues you are having with the relapse, Eric. I agree with you that one's treating doctors know best about how to help us. Of course, we cannot get tangible help online. I think, though, that people do post in asking for directions with what they think may be happening with their health. I don't think it hurts to discuss these problems online, and it seems that many people do this. It's no substitute for actual medical help though. Online discussions may give us some direction as to questions to ask our doctors, also.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Importance of seeing treating doctor about lab results
Agreed, Nancy, but sometimes I see people ask questions about lab results that I feel cannot possibly be answered (and should not be answered) in an Internet forum, even by a Beacon medical advisor, particularly the “Am I going to live or die?” type questions. Usually these come from new people, though, who are still learning how to navigate through this myeloma journey they are about to start.
I also often see some basic questions that I do not understand why they are not being answered by their doctor. If that doctor cannot or will not answer such questions, then maybe it is time to find one that can.
But then I have been in situations sometimes where my next appointment is weeks or months out and it is not worth finding an earlier one, so I have asked some basic questions on here myself sometimes.
And then some people have a natural tendency to seek out or search for the opinions of those who already agree with their own opinions and biases. If they do not like what their doctor tells them, then they find someone on the Internet who does tell them what they want to hear, and I suspect are ignoring or stop going to their treating doctor to get their opinions on lab results which I feel this is a big mistake. This is something I seen in some people do in other areas beyond cancer treatments and lab results.
I also often see some basic questions that I do not understand why they are not being answered by their doctor. If that doctor cannot or will not answer such questions, then maybe it is time to find one that can.
But then I have been in situations sometimes where my next appointment is weeks or months out and it is not worth finding an earlier one, so I have asked some basic questions on here myself sometimes.
And then some people have a natural tendency to seek out or search for the opinions of those who already agree with their own opinions and biases. If they do not like what their doctor tells them, then they find someone on the Internet who does tell them what they want to hear, and I suspect are ignoring or stop going to their treating doctor to get their opinions on lab results which I feel this is a big mistake. This is something I seen in some people do in other areas beyond cancer treatments and lab results.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Importance of seeing treating doctor about lab results
Some of us have results that are more complicated then others. I ask questions about my labs only when I have some questions about the results. My next appointment is not til January. Was hoping Multibilly could help me on my labs.
Re: Importance of seeing treating doctor about lab results
Muttibilly has educated himself quite a bit about myeloma and he is a source of information I have learned to trust. January is a long way out, maybe he can help out between now and then.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Importance of seeing treating doctor about lab results
Very good point, Eric. I also am a little uncomfortable with some of the questions folks have about disease symptoms and lab results. Most of the time, the response includes, "see your doctor!", of course, so that's good. There are also some very knowledgeable people here (including some real doctors). Still, I would hope anyone getting info from the 'net would take it with a grain of salt.
Sorry to hear you have a new spin on the disease to deal with. I hope you quickly find a very tolerable therapy that knocks it down.
Sorry to hear you have a new spin on the disease to deal with. I hope you quickly find a very tolerable therapy that knocks it down.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Importance of seeing treating doctor about lab results
..A point of order,...and some needed education, for me.
Is it accurate to call it a "Relapse" ...if you develop a new "Clone".??
I always thought relapse related to the re-appearance of your primary disease.
I'm very sorry to hear you have a new "Clone" to deal with Eric, but I would like to hear your thoughts on the "Relapse" issue. You are the guy fighting this new "Bug", and your thoughts should matter.
If the original Bug comes back--it is clearly a "relapse"; if a subsequent / secondary Bug arrives--how do we differentiate between original / subsequent Bug--by using the term relapse ?
I'd like to hear your thoughts, Eric.
Good luck.
Is it accurate to call it a "Relapse" ...if you develop a new "Clone".??
I always thought relapse related to the re-appearance of your primary disease.
I'm very sorry to hear you have a new "Clone" to deal with Eric, but I would like to hear your thoughts on the "Relapse" issue. You are the guy fighting this new "Bug", and your thoughts should matter.
If the original Bug comes back--it is clearly a "relapse"; if a subsequent / secondary Bug arrives--how do we differentiate between original / subsequent Bug--by using the term relapse ?
I'd like to hear your thoughts, Eric.
Good luck.
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Rneb
Re: Importance of seeing treating doctor about lab results
Rneb,
Interesting question Rneb, and one I do not know how to answer.
I feel it is an important to know if the clone when myeloma returns is the same one present during initial treatment. Should there be, or is there, a different term than relapse to distinguish the two? I do not know.
I feel this clone was probably there at initial diagnosis and treatment, but was not the predominant one at the time. But then maybe it was not and it developed later as a result of treatments like the stem cell transplant and other drugs. There seems to be some merit to the idea this can happen. And research clearly shows that it is common over time that more genetic and chromosomal deficiencies develop in myeloma cells for whatever reasons. But I really do not know if it will ever be known for me.
Interesting question Rneb, and one I do not know how to answer.
I feel it is an important to know if the clone when myeloma returns is the same one present during initial treatment. Should there be, or is there, a different term than relapse to distinguish the two? I do not know.
I feel this clone was probably there at initial diagnosis and treatment, but was not the predominant one at the time. But then maybe it was not and it developed later as a result of treatments like the stem cell transplant and other drugs. There seems to be some merit to the idea this can happen. And research clearly shows that it is common over time that more genetic and chromosomal deficiencies develop in myeloma cells for whatever reasons. But I really do not know if it will ever be known for me.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Importance of seeing treating doctor about lab results
Interesting topic, Eric.
I have actually learned more from the Beacon about how to interpret my lab results than I have from my myeloma specialist. It was actually Multibilly who first clued me in on how to determine my correct light chain ratio. I'm an IgG lambda smolderer, and my correct ratio is the inversion of the kappa / lambda ratio provided in the lab reports. This was never explained by my specialist, and the ratio was not discussed during my appointments.
Presently, my involved/uninvolved ratio is not calculable because the bottom of the ratio is near 0. By mathematics theory it is approaching infinity (a number divided by a number just above zero approaches infinity). Under the new Rajkumar criteria, I now would be considered to have multiple myeloma.
It certainly has made me wonder if my specialist somehow missed this important result, or if he doesn't believe it is enough to reclassify me based on no other evidence of active disease.
I have actually learned more from the Beacon about how to interpret my lab results than I have from my myeloma specialist. It was actually Multibilly who first clued me in on how to determine my correct light chain ratio. I'm an IgG lambda smolderer, and my correct ratio is the inversion of the kappa / lambda ratio provided in the lab reports. This was never explained by my specialist, and the ratio was not discussed during my appointments.
Presently, my involved/uninvolved ratio is not calculable because the bottom of the ratio is near 0. By mathematics theory it is approaching infinity (a number divided by a number just above zero approaches infinity). Under the new Rajkumar criteria, I now would be considered to have multiple myeloma.
It certainly has made me wonder if my specialist somehow missed this important result, or if he doesn't believe it is enough to reclassify me based on no other evidence of active disease.
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SueT
Re: Importance of seeing treating doctor about lab results
Eric -
I appreciate this post because I believe we share the same transplant doctor. Last time I saw him, I confirmed to myself I would NOT return to him because he doesn't impress me with a sufficient knowledge of the disease.
Last time I went to him (June of this year) the nurse gave me an incorrect immunization (hepatitis B) and called a few hours later to say "Whoops!" and I'd have to go to a clinic and get the correct one that was intended. I don't recall the details, but I think she mistook Prevnar for hepatitis B. So I had to start the hepatitis B series – not a bad thing, but shocking to find I had inadvertently been given an incorrect immunization!
At any rate, I appreciate the information because it made me consider that when I face relapse I should probably either suck it up and return to him or seek out another doctor at that facility for a second opinion. I have pretty much decided that when my time comes for relapse, I will seek out a myeloma specialist and (at my expense) pay to get a third opinion.
I have always appreciated everyone's input on this website regarding any question that is posed. Obviously the doctor's are directing treatments based on their knowledge of the labs and the disease, but I have been far more enlightened because of questions I've asked here than by any questions and answers that I have received from my two myeloma doctors (transplant doctor and local oncologist).
All in all, though, it is very important to be proactive with the treating doctors and be on the same page with them as far as each treatment and the specific reason why that treatment is best for each individual.
I appreciate this post because I believe we share the same transplant doctor. Last time I saw him, I confirmed to myself I would NOT return to him because he doesn't impress me with a sufficient knowledge of the disease.
Last time I went to him (June of this year) the nurse gave me an incorrect immunization (hepatitis B) and called a few hours later to say "Whoops!" and I'd have to go to a clinic and get the correct one that was intended. I don't recall the details, but I think she mistook Prevnar for hepatitis B. So I had to start the hepatitis B series – not a bad thing, but shocking to find I had inadvertently been given an incorrect immunization!
At any rate, I appreciate the information because it made me consider that when I face relapse I should probably either suck it up and return to him or seek out another doctor at that facility for a second opinion. I have pretty much decided that when my time comes for relapse, I will seek out a myeloma specialist and (at my expense) pay to get a third opinion.
I have always appreciated everyone's input on this website regarding any question that is posed. Obviously the doctor's are directing treatments based on their knowledge of the labs and the disease, but I have been far more enlightened because of questions I've asked here than by any questions and answers that I have received from my two myeloma doctors (transplant doctor and local oncologist).
All in all, though, it is very important to be proactive with the treating doctors and be on the same page with them as far as each treatment and the specific reason why that treatment is best for each individual.
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
21 posts
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