Hi Everyone!
I was recently diagnosed with SMM and, until now, I have been quietly visiting this website, but feel the need to reach out and share my story (or is it venting?)
My story starts with what I thought was carpal tunnel syndrome. I was pregnant with twins in 2002 and developed carpal tunnel syndrome ... which they said would resolve after delivery. Well, as any parent knows, the first few years of child-rearing is a blur! It wasn't until the past few years that I realized I was waking up with numb hands during the night.
I finally went to my doctor who ordered a nerve conduction test. When that came back normal, the neurologist recommended a brain and neck MRI. (I've secretly always wanted a brain MRI to be sure I had a brain!). My doctor called me to let me know that the brain is fine (yeah!) but there was an abnormality in C7. He thought it was just an incidental finding, but to cover his you-know-what, he wanted me to see a hematologist/oncologist to rule-out myeloma.
What?!?
I had already lost my brother and father to different cancers, and my mom is a breast cancer survivor, so I kept this to myself. There was no way this was cancer. I'm too healthy! I didn't even tell my husband ... until I got the blood results and the hematologist said my IgA was "scary" high as was the K/L Ratio. I had the gamut of testing we are all too familiar with, and since I don't have the CRAB symptoms, he diagnosed SMM.
I was presented with articles, statistics, and so many other overwhelming pieces of information. The dam broke ... I completely lost it. I cried every day for two weeks straight, punched a hole in my bedroom wall, etc, etc, etc. Will I see my twins get married? So many questions!
I am actually getting a second opinion (per my doc's suggestion) at University of Maryland next month. I have calmed down now and my husband and I have decided to have fun. We do not plan to tell my kids until I require treatment, so, we are planning trips and decided to get a hot tub!
I have really enjoyed the support I feel this website offers and I look forward to making new friends! A lot of my questions have been answered (especially the dreaded "prognosis" ones which can make one crazy!). But I don't see a lot of discussion about K/L ratios. I'm wondering how many of you have issues with that?
I also am amazed at how many of you are in my age group! Here's to a fun and happy life! Thanks for listening!
Forums
10 posts
• Page 1 of 1
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Did I get hit by a train?
Hey GardenGirl,
Sorry to see you join the club.
I assume you are into gardening?
I think getting a second opinion is always a great move. I personally found it invaluable to get different perspectives from doctors both associated and not associated with transplant centers. The vastly different inputs I got from my different specialists that I have seen was a true revelation to me and convinced me that I had to really understand this disease on my own before I might (and I underscore "might") have to deal with the choice of treatment down the line.
Regarding K/L ratios, there really doesn't seem to be consensus on just how important this ratio is to multiple myeloma prognosis or predicting if a SMM patient will progress to multiple myeloma. This article pretty well summarizes a lot of the open questions regarding its role as a prognostic/diagnostic tool.
http://www.effectivehealthcare.ahrq.gov/search-for-guides-reviews-and-reports/?pageaction=displayproduct&productid=1231
I therefore just interpret the K/L ratio as one of several markers to watch and don't try to subscribe an undo amount of importance to it since my SMM is not sFLC restricted.
For the sake of discussion, given that your are smoldering, what would you do differently if the K/L ratio was shown to be a very reliable predictor of progression to multiple myeloma and your K/L was on the rise? That's the question I always ask myself when I look at a new prognostic tool like GEP or some new biomarker. The jury is still out on whether it makes sense to treat SMM early and the only trials being done right now on the early treatment of SMM patients are for those folks in the high-risk SMM category.
BTW, when you say your IgA and K/L was scary high, what exactly are the levels?
Best of luck to you on your journey.
Sorry to see you join the club.
I assume you are into gardening?
I think getting a second opinion is always a great move. I personally found it invaluable to get different perspectives from doctors both associated and not associated with transplant centers. The vastly different inputs I got from my different specialists that I have seen was a true revelation to me and convinced me that I had to really understand this disease on my own before I might (and I underscore "might") have to deal with the choice of treatment down the line.
Regarding K/L ratios, there really doesn't seem to be consensus on just how important this ratio is to multiple myeloma prognosis or predicting if a SMM patient will progress to multiple myeloma. This article pretty well summarizes a lot of the open questions regarding its role as a prognostic/diagnostic tool.
http://www.effectivehealthcare.ahrq.gov/search-for-guides-reviews-and-reports/?pageaction=displayproduct&productid=1231
I therefore just interpret the K/L ratio as one of several markers to watch and don't try to subscribe an undo amount of importance to it since my SMM is not sFLC restricted.
For the sake of discussion, given that your are smoldering, what would you do differently if the K/L ratio was shown to be a very reliable predictor of progression to multiple myeloma and your K/L was on the rise? That's the question I always ask myself when I look at a new prognostic tool like GEP or some new biomarker. The jury is still out on whether it makes sense to treat SMM early and the only trials being done right now on the early treatment of SMM patients are for those folks in the high-risk SMM category.
BTW, when you say your IgA and K/L was scary high, what exactly are the levels?
Best of luck to you on your journey.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Did I get hit by a train?
Hi MountainGuy! Working out in the yard is my passion. So once I got the news, after thinking about my kids, I was scared I wouldn't be able to garden any more! You must like the mountains!
Let's see, my IgA was 2731 mg/dL (normal range 91-414), free kappa LC was 696.59 (normal 3.30-19.40) and the K/L was 368.57 (normal 0.26-1.65). I guess those numbers DO look scary! Also, My IgG and IgM were low (316 and 21 respectively).
It drives me crazy knowing these cells are circulating in my body! I'm considering starting curcumin, once I talk to the specialist at UofM in a few weeks!
Thanks for responding!
Let's see, my IgA was 2731 mg/dL (normal range 91-414), free kappa LC was 696.59 (normal 3.30-19.40) and the K/L was 368.57 (normal 0.26-1.65). I guess those numbers DO look scary! Also, My IgG and IgM were low (316 and 21 respectively).
It drives me crazy knowing these cells are circulating in my body! I'm considering starting curcumin, once I talk to the specialist at UofM in a few weeks!
Thanks for responding!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Did I get hit by a train?
Hello gardengirl,
I am a fellow gardener with SMM.
Your journey sounded very stressful and overwhelming.
You did not mention if your local MD did a bone marrow biopsy. That will yield important information in choosing your options.
Hoping that your second opinion will help to complete your evaluation so you can enjoy that hot tub with your family!
I am a fellow gardener with SMM.
Your journey sounded very stressful and overwhelming.
You did not mention if your local MD did a bone marrow biopsy. That will yield important information in choosing your options.
Hoping that your second opinion will help to complete your evaluation so you can enjoy that hot tub with your family!
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Blee - Name: Blee
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Oct 2013
- Age at diagnosis: 58
Re: Did I get hit by a train?
Thank you, Blee!
My BMPC was 15%. Through this website and research I feel I finally understand what most of the "numbers" mean, but can you, or anyone else reading this, explain the significance of FLC in terms of progression from SMM to multiple myeloma? Does it increase risk? This is what has me really scared!
P.S. Maryland, like much of the U.S., is still blanketed with snow, so the hot tub is still in the warehouse! Could really use it now!
My BMPC was 15%. Through this website and research I feel I finally understand what most of the "numbers" mean, but can you, or anyone else reading this, explain the significance of FLC in terms of progression from SMM to multiple myeloma? Does it increase risk? This is what has me really scared!
P.S. Maryland, like much of the U.S., is still blanketed with snow, so the hot tub is still in the warehouse! Could really use it now!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Did I get hit by a train?
Hi Gardengirl and Blee,
Welcome to the wild Smoldering multiple myeloma ride ! Not an easy ride to be on for sure, but so many supportive people on this site to help us understand our place in the spectrum. All of the very best to both of you !
Best regards from a fellow Smolderer,
Dana H
Welcome to the wild Smoldering multiple myeloma ride ! Not an easy ride to be on for sure, but so many supportive people on this site to help us understand our place in the spectrum. All of the very best to both of you !
Best regards from a fellow Smolderer,
Dana H
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: Did I get hit by a train?
That's terrific that your BMPC is only 15%!
Have you had a chance to read the Beacon Staff's posting about a week ago about SMM progression? I've cut and pasted it below.
---------
The approach that Dana describes for defining "ultra high-risk" smoldering myeloma patients -- or "early multiple myeloma" patients -- is one that was recently proposed by the Mayo Clinic in the following paper published in December:
http://bloodjournal.hematologylibrary.org/content/122/26/4172.full.pdf (full text)
The specific algorithm, based on bone marrow plasma cell percentages and the other factors Dana mentioned, is summarized in this diagram:
http://bloodjournal.hematologylibrary.org/content/122/26/4172/F4.expansion.html
The paper as a whole is a very detailed look at how the definition of smoldering myeloma has evolved and the different approaches that have been investigated for predicting whether or not a smoldering patient will progress to active myeloma.
It also provides information on studies that have been carried out investigating whether early treatment of smoldering myeloma is beneficial or not.
--------
Like you, I have a markedly elevated FLC ratio which is really scary. Plus my BMPC is 40%, which also scares me.
Thus far, I have received a range of treatment options and so continue to do my own research and reflection. The community on this forum has been so helpful.
Hope that when you get your complete evaluation, you will receive reassuring news. There are additonal factors which appear to be predictors of progression (like M-Protein and FISH), and they are all still POSSIBLE predictors. The great news is that you are CRAB negative!
Please feel free to send me private message or continue on this post. I'm in California, and would love moisture of any kind--even snow!
Have you had a chance to read the Beacon Staff's posting about a week ago about SMM progression? I've cut and pasted it below.
---------
The approach that Dana describes for defining "ultra high-risk" smoldering myeloma patients -- or "early multiple myeloma" patients -- is one that was recently proposed by the Mayo Clinic in the following paper published in December:
http://bloodjournal.hematologylibrary.org/content/122/26/4172.full.pdf (full text)
The specific algorithm, based on bone marrow plasma cell percentages and the other factors Dana mentioned, is summarized in this diagram:
http://bloodjournal.hematologylibrary.org/content/122/26/4172/F4.expansion.html
The paper as a whole is a very detailed look at how the definition of smoldering myeloma has evolved and the different approaches that have been investigated for predicting whether or not a smoldering patient will progress to active myeloma.
It also provides information on studies that have been carried out investigating whether early treatment of smoldering myeloma is beneficial or not.
--------
Like you, I have a markedly elevated FLC ratio which is really scary. Plus my BMPC is 40%, which also scares me.
Thus far, I have received a range of treatment options and so continue to do my own research and reflection. The community on this forum has been so helpful.
Hope that when you get your complete evaluation, you will receive reassuring news. There are additonal factors which appear to be predictors of progression (like M-Protein and FISH), and they are all still POSSIBLE predictors. The great news is that you are CRAB negative!
Please feel free to send me private message or continue on this post. I'm in California, and would love moisture of any kind--even snow!
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Blee - Name: Blee
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Oct 2013
- Age at diagnosis: 58
Re: Did I get hit by a train?
Hi Garden Girl,
If you really want to take a deeper dive into risk factors for progression for SMM patients, you may want to take some time to review this presentation. It does specifically talk about the use of the sFLC ratio as a risk-of-progression factor. Note that Dr. Durie got the blue and red legends reversed on slide 7 (the red line should be an sFLC of <1/8 or > 8). But he got the legends correct on the same graph on p 34.
http://szpiczak.org/lang/aktualnosci/kongresy/rok_2013/pdf/relacja_13th_imw_2013/4_5_13-Durie-Kyoto-SMM_FINAL.pdf
If it's any consolation to you, my sFLC ratio is 0.04 (quite a bit below the 0.125 threshold they use here for lambda type), and it has been as low as 0.01. While not completely accurate, you can just take the inverse of those numbers to get an idea of what those numbers might be for a kappa patient like you (0.04 and 0.01 for lambda type would be ~ 25 and 100 for kappa-type, respectively).
Take care.
If you really want to take a deeper dive into risk factors for progression for SMM patients, you may want to take some time to review this presentation. It does specifically talk about the use of the sFLC ratio as a risk-of-progression factor. Note that Dr. Durie got the blue and red legends reversed on slide 7 (the red line should be an sFLC of <1/8 or > 8). But he got the legends correct on the same graph on p 34.
http://szpiczak.org/lang/aktualnosci/kongresy/rok_2013/pdf/relacja_13th_imw_2013/4_5_13-Durie-Kyoto-SMM_FINAL.pdf
If it's any consolation to you, my sFLC ratio is 0.04 (quite a bit below the 0.125 threshold they use here for lambda type), and it has been as low as 0.01. While not completely accurate, you can just take the inverse of those numbers to get an idea of what those numbers might be for a kappa patient like you (0.04 and 0.01 for lambda type would be ~ 25 and 100 for kappa-type, respectively).
Take care.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Did I get hit by a train?
Do FLC ratios often fluctuate that much (from 25 to 100) without any treatment?
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Blee - Name: Blee
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Oct 2013
- Age at diagnosis: 58
Re: Did I get hit by a train?
Mine do 
But remember, you can have one FLC go up while the other one goes down, which can really magnify the change in the ratio from one lab to the next.
But you really need to graph these things over time to put them in perspective. I graph 'em and also look at things like trend lines and standard deviation to get a good mathematical sense of a trend and whether something is truly bouncing out of the ordinary or is simply a normal variation.
But that's just me and I happen to like doing that sort of thing. It does help me when chatting with the doc when I get my latest numbers and it makes it much easier to talk about any surprises that may come up when I get my new lab numbers every couple of months.
But remember, you can have one FLC go up while the other one goes down, which can really magnify the change in the ratio from one lab to the next.But you really need to graph these things over time to put them in perspective. I graph 'em and also look at things like trend lines and standard deviation to get a good mathematical sense of a trend and whether something is truly bouncing out of the ordinary or is simply a normal variation.
But that's just me and I happen to like doing that sort of thing. It does help me when chatting with the doc when I get my latest numbers and it makes it much easier to talk about any surprises that may come up when I get my new lab numbers every couple of months.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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