So it's been about a month since I got my diagnosis of smoldering myeloma. I have learned so much from all who have taken the time to share. I am just going to throw out a few things ...
It seems many graph and/or keep close track of numbers; beside M protein, light chains, kidney function numbers, calcium ... what others am I missing?
I did get a second opinion and am seeing a myeloma specialist.
I am still considering curcumin ... But so many types and dosing ... still researching that.
I also need to get a copy of my cytogenetic testing to see what mine are.
I am changing my diet, getting more exercise and cutting stress (well except for this) and getting rest.
For those of you who would like to share more of what you have already learned; please do. What I have learned most from this site is to continue to hope and live life. Thanks!
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Re: What lab results should I be tracking?
I like to chart: IgG, IgA, IgM, Lambda, Kappa, K/L Ratio, M-spike, Total Protein, Albumin, Beta2 Microglobulin, BUN, Calcium, Creatinine, HGB, and RBC.
This way I can keep my eye on any renal or anemia-related issues. Some of the markers like Albumin and Beta2 Microglobulin are also used for ISS staging of multiple myeloma.
Given my technical background, I also like to also plot polynomial trend lines and standard deviation error bands so that trends and/or out-of-the-normal fluctuations can jump out at me on the graphs....but I get that this may not be for everybody
It's also helpful having all these charted when I meet with the doc every couple of months as he can quickly point out "yeah, your such-and-such is a bit high, but your other-such-and-such is low, so don't worry about it".
There was a point where we were concerned about renal issues since my free light chains don't show up in my urine, so having some of these markers that track kidney health in graphical form was very handy.
I also track sodium and chloride, since I am psuedohyponatremic as a result of SMM, but you probably don't need to do that unless your are already low on one on of these markers.
This way I can keep my eye on any renal or anemia-related issues. Some of the markers like Albumin and Beta2 Microglobulin are also used for ISS staging of multiple myeloma.
Given my technical background, I also like to also plot polynomial trend lines and standard deviation error bands so that trends and/or out-of-the-normal fluctuations can jump out at me on the graphs....but I get that this may not be for everybody
It's also helpful having all these charted when I meet with the doc every couple of months as he can quickly point out "yeah, your such-and-such is a bit high, but your other-such-and-such is low, so don't worry about it".
There was a point where we were concerned about renal issues since my free light chains don't show up in my urine, so having some of these markers that track kidney health in graphical form was very handy.
I also track sodium and chloride, since I am psuedohyponatremic as a result of SMM, but you probably don't need to do that unless your are already low on one on of these markers.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: What lab results should I be tracking?
So I got my first blood test results back since being diagnosed last month. M spike was not posted ugh. bun, creatine, albumin, total protein -- though elevated slightly from 1st test -- are within normal limits. IgG, IgA & IgM all increased slightly.
My understanding is I am still ok with numbers increasing as long as there are no CRAB symptoms. I also had a DEXA scan which I was told was ok as far as bone density. I am planning on calling local doctor to find out M spike.
What am I missing? What do I still need to ask?
As much as I think I have learned this last month, I realize there is still so much more to learn. Still not comfortable with just a bone survey, but am told my file needs to be documented before a full PET scan can be done.
My understanding is I am still ok with numbers increasing as long as there are no CRAB symptoms. I also had a DEXA scan which I was told was ok as far as bone density. I am planning on calling local doctor to find out M spike.
What am I missing? What do I still need to ask?
As much as I think I have learned this last month, I realize there is still so much more to learn. Still not comfortable with just a bone survey, but am told my file needs to be documented before a full PET scan can be done.
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Smittie - Age at diagnosis: 54
Re: What lab results should I be tracking?
I just finished my first follow up appointment after being diagnosed with SMM and found out that in 3 months, blood sure can change.
M spike still less than one, no crab, but FLC went from 10 to 55. BMB was 15 to 20 %. I am curious if anyone else experienced a jump like that and leveled off?
Myeloma specialist said since I am newly diagnosed, if it continued to rise that quickly we would treat at around 100.
I would appreciate anyone's input or thoughts. Thanks
M spike still less than one, no crab, but FLC went from 10 to 55. BMB was 15 to 20 %. I am curious if anyone else experienced a jump like that and leveled off?
Myeloma specialist said since I am newly diagnosed, if it continued to rise that quickly we would treat at around 100.
I would appreciate anyone's input or thoughts. Thanks
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Smittie - Age at diagnosis: 54
Re: What lab results should I be tracking?
I track everything that Multibilly said with the addition of LDH. Since I am ultra-high-risk SMM, I get blood work every 4 weeks.
Smittie, what units are you using to track your FLC? My IgA has fluctuated slightly over the past 6 months, but my FLC has gone up every month. I will start treatment soon because of that.
Smittie, what units are you using to track your FLC? My IgA has fluctuated slightly over the past 6 months, but my FLC has gone up every month. I will start treatment soon because of that.
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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: What lab results should I be tracking?
Hi Garden Girl ... still new to reading all these results. Looks like it's the kappa free light chain, mg/do ... does that make sense?
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Smittie - Age at diagnosis: 54
Re: What lab results should I be tracking?
You must mean mg/dL....that would make sense. My lab measures in mg/L, so your numbers would convert by a factor of 10 to 100 and 550. Just to compare, my kappa light chains went from 696 to 957 over the course of 6 months. Therefore, I have been told my myeloma is "evolving" yet still considered smoldering since I do not have any CRAB features. However, your doctor is probably using the number of 100 mg/dL as a treatment point because then you fall into the high-risk category (meaning chance of progression to active myeloma is high, within 1-2 years). Such an emotional rollercoaster!
http://bloodjournal.hematologylibrary.org/content/122/26/4172/F4.large.jpg
http://bloodjournal.hematologylibrary.org/content/122/26/4172/F4.large.jpg
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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: What lab results should I be tracking?
Wondering what others have experienced with FLC, both the absolute number for kappa and lambda, as well as the ratio. How much do your numbers bobble up and down. And, what kind of guidance have your doctors given you in regards to these numbers, and starting 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: What lab results should I be tracking?
IgG t (11,14) myeloma. Dx May 2012.
My Kappa / Lambda (and ratios) are reported in G/DL units. ( Gram Per Deciliter).
We also have Runza's in my state,... so it must be a regional thingie. ?
I really watch those items mentioned by MultiBilly...and also the Kappa/Lambda measurements / ratio.... closest.
With Low secretory MM---my low M spike doesn't seem so ...accurate? It has always been low...?
Because of the false (often low) M spike---I really lather m'self up over the lab chemistries--looking especially for the Renal and Globulin level fluctuations. (Beta 2,etc)
Subtle keys to performance, indicators, status, and possible infections--even in "Healthy " people.
Note--Loop of Henle is not a scenic automobile drive...
I do not have exotic Logarithmic analyses--but I look for month to month--3 month trends from the above. I do chart and accumulate my Labs for reference. Kudos to Don from "My Myeloma" (Minnesota Don).
Not sure if they sell Runza's there...but they do in Wisconsin and Iowa.
Lots of Sodium in those--but they are sure good!
With Low/ Non-secretory multiple myeloma your mileage will prolly vary ?
Regards,
My Kappa / Lambda (and ratios) are reported in G/DL units. ( Gram Per Deciliter).
We also have Runza's in my state,... so it must be a regional thingie. ?
I really watch those items mentioned by MultiBilly...and also the Kappa/Lambda measurements / ratio.... closest.
With Low secretory MM---my low M spike doesn't seem so ...accurate? It has always been low...?
Because of the false (often low) M spike---I really lather m'self up over the lab chemistries--looking especially for the Renal and Globulin level fluctuations. (Beta 2,etc)
Subtle keys to performance, indicators, status, and possible infections--even in "Healthy " people.
Note--Loop of Henle is not a scenic automobile drive...
I do not have exotic Logarithmic analyses--but I look for month to month--3 month trends from the above. I do chart and accumulate my Labs for reference. Kudos to Don from "My Myeloma" (Minnesota Don).
Not sure if they sell Runza's there...but they do in Wisconsin and Iowa.
Lots of Sodium in those--but they are sure good!
With Low/ Non-secretory multiple myeloma your mileage will prolly vary ?
Regards,
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Rneb
9 posts
• Page 1 of 1