My husband was diagnosed with smoldering multiple myeloma in December 2013 . He had a bone marrow biopsy, bone scan, and lab work done, and was told he had smoldering myeloma!
They have since told us that it is I believe 50 percent cellular in the marrow, with 15 percent plasma cells with absent iron stores. Cytogenetics with FISH shows IgH rearrangement in 10 percent. We were told that he had IgG kappa type smoldering myeloma, high risk.
He has remained pretty steady in lab work over the last 15 months. The last set of lab work is a little worrisome.
His first labs were:
CBC 6.7
Hgb 13.5.
Platelet 187
IgG 1083
IgA 230
IgM 37
Creatinine 1.43.
Albumin 3.8
Calcium 9.0
Beta-2. 3.8
Free kappa light chains 231.73
Free lambda light chains 20.54.
Free kappa/ lambda 11.28.
These are serum numbers. The last set of labs are:
Rbc 4.18
Hgb 12.6
Htc 38.5
Platelet 213
BUN 32
Creatinine 1.60
Calcium 9.2
Albumin 3.3
IgG 1175
IgA 236
IgM 32.
These are mg/dl
Gamma M spike was 0.7, this time is 0.8
Kappa light chain is 373.05
Lambda light chain 24.76
Kappa/ lamba free 15.07
We started at one cancer place here in Arizona and then changed to Banner MD Anderson in April 2014. We also consulted with the Mayo Clinic in Scottsdale out here, but ended up with Banner MD Anderson; it is much closer to home.
I must say my husband is the patient, but he cannot handle any information about this, so I have been trying to learn about this, and hope to find a support group as well. It is hard to ask questions to his doctor because my husband does not want to know anything that he does not have to at that time. He has told his doctor this also, but he has made it clear to the doctor that he can tell me anything I want to know.
I also need to add the fact my husband is about 6'1" (1.85 m) and 430 lbs (195 kg). He is 65 years old and has blood pressure problems, controlled by meds. Also some irregular heart problems, controlled by meds, and some heavy fluid retention in the legs (his legs are so swollen he can hardly walk). This is not caused by myeloma.
I have great concern with his recent numbers, and when he does need treatment, will he be able to handle it. The doctor made an appointment for late September, so I guess he is not worried. We got the numbers after we left the office on the last appointment, because labs were done the same day as the appointment. I do not know why that happened that way. I have been reading a lot of everyone's post, so I would welcome anyone's comments and support.
Everyone's support of each other here seems to be helpful and warm, each supporting and helping with understanding of terms and labs. I was hoping someone could help me understand my husband's labs and give me some suggestions. Feeling a little overwhelmed!
Thanks!!!
Forums
5 posts
• Page 1 of 1
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Ward211 - Name: Doris Warner
- Who do you know with myeloma?: My husband Gary
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 63
Re: Smoldering myeloma progressing?
Welcome to the forum, Doris.
I'm sorry for all the worries you have about your husband and his health. I hope those of us here in the forum can be of some help to both of you.
The first thing I would say is that you should be careful about drawing any conclusions from a single set of lab results. You really want to look at trends. If you have an easy way to enter and graph some of your husband's lab results, or can see them graphed on the treatment center's portal, that can be really helpful for figuring out if new numbers are unusual or similar to blips that have happened before.
The key numbers you want to watch for your husband are his kappa free light chain level, the kappa-lambda ratio, and his M-spike. Those give the most direct measure of what is going on with his myeloma.
The other thing you want to do is watch the numbers related to the "CRAB" criteria for determining whether or not someone's myeloma is "symptomatic". "CRAB" stands for
- Calcium levels in the blood
- Renal (kidney) function
- Anemia
- Bone lesions
So you want to look at your husband's blood calcium level, blood creatinine level (or creatinine clearance), his hemoglobin level (as an easy way to check for anemia), and x-rays / MRIs / etc for possible bone lesions.
If you watch the light chain and M-spike numbers, plus his calcium, creatinine, and hemoglobin numbers, you'll have key numbers for tracking whether his disease is progressing.
Of course, you also want to watch for signs of bone lesions in x-rays, MRIs, or PET scans, and also keep track of his bone marrow plasma cell percentage.
Those are the things you want to focus on. I can give you some more feedback, but maybe I should stop here and see if you have any questions, or if you want to share any additional information about your husband's case.
I'm sorry for all the worries you have about your husband and his health. I hope those of us here in the forum can be of some help to both of you.
The first thing I would say is that you should be careful about drawing any conclusions from a single set of lab results. You really want to look at trends. If you have an easy way to enter and graph some of your husband's lab results, or can see them graphed on the treatment center's portal, that can be really helpful for figuring out if new numbers are unusual or similar to blips that have happened before.
The key numbers you want to watch for your husband are his kappa free light chain level, the kappa-lambda ratio, and his M-spike. Those give the most direct measure of what is going on with his myeloma.
The other thing you want to do is watch the numbers related to the "CRAB" criteria for determining whether or not someone's myeloma is "symptomatic". "CRAB" stands for
- Calcium levels in the blood
- Renal (kidney) function
- Anemia
- Bone lesions
So you want to look at your husband's blood calcium level, blood creatinine level (or creatinine clearance), his hemoglobin level (as an easy way to check for anemia), and x-rays / MRIs / etc for possible bone lesions.
If you watch the light chain and M-spike numbers, plus his calcium, creatinine, and hemoglobin numbers, you'll have key numbers for tracking whether his disease is progressing.
Of course, you also want to watch for signs of bone lesions in x-rays, MRIs, or PET scans, and also keep track of his bone marrow plasma cell percentage.
Those are the things you want to focus on. I can give you some more feedback, but maybe I should stop here and see if you have any questions, or if you want to share any additional information about your husband's case.
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JimNY
Re: Smoldering myeloma progressing?
Jim,
Thank you for the advice! I think I understand the CRAB, but what I do not understand is how much of a change in these would be cause of concern. From what I have read here, everyone here has numbers that are different and their myeloma has been found in different stages along the progression of their myeloma.
I also do not understand, you mentioned ratio on kappa/lambda! I do not know how to read this or what it means.
I also have a question, The doctor said my husband was high risk. I looked at the doctor's report he gave us and it says "his cytogenetic risk factor of IGH translocation, which does suggest he is higher risk.". I do not know if that means that he will move to multiple myeloma sooner than some, or if it means that when he gets to treatment, it will maybe make it more drug resistant, harder to treat.
I have tried to read as much as I can, but I admit a lot of this I have a hard time understanding. This is the reason why I got here to try and read other's stories and to try and learn as much as I can!
Thanks, Doris
The Kappa light chains - 373.05
Kappa/lambda, free- 15.07
Thank you for the advice! I think I understand the CRAB, but what I do not understand is how much of a change in these would be cause of concern. From what I have read here, everyone here has numbers that are different and their myeloma has been found in different stages along the progression of their myeloma.
I also do not understand, you mentioned ratio on kappa/lambda! I do not know how to read this or what it means.
I also have a question, The doctor said my husband was high risk. I looked at the doctor's report he gave us and it says "his cytogenetic risk factor of IGH translocation, which does suggest he is higher risk.". I do not know if that means that he will move to multiple myeloma sooner than some, or if it means that when he gets to treatment, it will maybe make it more drug resistant, harder to treat.
I have tried to read as much as I can, but I admit a lot of this I have a hard time understanding. This is the reason why I got here to try and read other's stories and to try and learn as much as I can!
Thanks, Doris
The Kappa light chains - 373.05
Kappa/lambda, free- 15.07
-
Ward211 - Name: Doris Warner
- Who do you know with myeloma?: My husband Gary
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 63
Re: Smoldering myeloma progressing?
Hi Doris,
Your husband is so lucky that you are dealing with this for him.
The kappa lambda ratio is just the kappa light chains number divided by the lambda light chains number. Your husband's "involved" light chain seems to be the kappa, so that is the one that is likely to rise and can be an indicator to watch, which makes the ratio rise as well. You do not list the lab's normal ranges, but certainly his kappa and his ratio are well above normal, but this is seen often in smoldering multiple myeloma and even MGUS without it meaning progression (or at least, progression may not occur any time soon).
"High risk" can mean many things and your confusion is understandable! I think that, in the past, factors like the % plasma cells and kappa/lambda ratios were used to determine risk of progression. They still are, but cytogenetic risk factors such as you stated are becoming more prominent.
You mentioned that your husband has an IGH translocation - do you know what other chromosome is involved? IGH is on chromosome 14, so for instance an 11:14 translocation involves the IGH locus on 14 and chromosome 11. That is not a very his risk translocation, but others, such as 4:14, are considered medium risk. 14:16 and a few others are possible.
There are some different statistics related to time to progression, vs. how well a patient does with treatment, related to different cytogenetic features such as the translocations and other mutations. But there are not a lot of studies since this data was not available until fairly recently and then patients receive different types of therapies. Many patients do very well in treatment even with high risk cytogenetics. Did your husband's FISH result indicate any other abnormalities besides the IGH translocation?
Your husband is so lucky that you are dealing with this for him.
The kappa lambda ratio is just the kappa light chains number divided by the lambda light chains number. Your husband's "involved" light chain seems to be the kappa, so that is the one that is likely to rise and can be an indicator to watch, which makes the ratio rise as well. You do not list the lab's normal ranges, but certainly his kappa and his ratio are well above normal, but this is seen often in smoldering multiple myeloma and even MGUS without it meaning progression (or at least, progression may not occur any time soon).
"High risk" can mean many things and your confusion is understandable! I think that, in the past, factors like the % plasma cells and kappa/lambda ratios were used to determine risk of progression. They still are, but cytogenetic risk factors such as you stated are becoming more prominent.
You mentioned that your husband has an IGH translocation - do you know what other chromosome is involved? IGH is on chromosome 14, so for instance an 11:14 translocation involves the IGH locus on 14 and chromosome 11. That is not a very his risk translocation, but others, such as 4:14, are considered medium risk. 14:16 and a few others are possible.
There are some different statistics related to time to progression, vs. how well a patient does with treatment, related to different cytogenetic features such as the translocations and other mutations. But there are not a lot of studies since this data was not available until fairly recently and then patients receive different types of therapies. Many patients do very well in treatment even with high risk cytogenetics. Did your husband's FISH result indicate any other abnormalities besides the IGH translocation?
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Carol of Eden - Name: Carol
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: MGUS 2009, SMM 2013
- Age at diagnosis: 50
Re: Smoldering myeloma progressing?
Carol,
Thank you, for explaining the ratio! I appreciate all the help we can get here.
You ask about my husband's first labs. The first doctor we went to did not explain anything or give us a copy of labs! We then switched to Banner MD Anderson here in Arizona. The first labs there were from April 2014:
RBC 4.52
HGB 14.2
HCT 41.1
Bun 23
Creatinine 1.40
GFR 54
Calcium 8.9
Gamma M-Spike 0.7 g/dL (0.8 g/dL)
Kappa Light Chain 265.69
Kappa / Lambda 10.85.
It did have IgG numbers on the report.
My husbands labs from May 29 are
RBC 4.18
HGB 12.6
HCT 38.5
Bun 32
Creatinine 1.60
GFR 46
Calcium 9.2
Gamma-Spike 0.8 g/dL (8 g/L)
Kappa Light Chain 373.05
Kappa / Lambda 15.07
IgG 1176
IgG 236
IgG 32 .
His IgG numbers are slightly going up as well as the kappa light chains. At the same time, it appears that his Hgb and his GFR is going down, and creatinine is going up. The M-spike as always remained at 0.7 till this last lab, then it changed to 0.8.
I gather from what I am reading here that these are slight changes and the numbers can go up and down without meaning that the myeloma is getting worse. We have only had one bone scan done in December 2013. No MRI's or CT or other x-rays done.
You ask about his cytogenetic risk factor. I do not understand this part either. I will copy off the report. It says:
5 percent plasma cells consistent with multiple myeloma. Kappa restricted. Otherwise 50 percent cellularity in the marrow with absent iron stores. Cytogenetic so with FISH revealing trisomy 5p, trisomy 9 in 5 percent as as IGH rearrangement in 10 percent . Additional testing did not identify for, 4 or 14 , 6 or 11, 14 as the etiology of this IGH translocation. Karyotype, XY Skeletal survey negative for any bone lesions.
This report was done December 2013. After this report, we changed doctors in April 2014 to Banner MD Anderson . The labs above are from first labs there and the last labs there in May.
My husband has always had some lower back pain due to weight and one leg a couple inches shorter than the other leg, but he has complained of his back hurting more the last few weeks, and I noticed he is taking more over the counter aspirins. And ibuprofen lately, and got a TENS machine to put on his back to help with the pain. He has not told his doctor about this and does not want me to either. I feel this is important for the doctor to know and decide if related to this or not. My husband does not think it is related.
Having said that, at this point my husband does not read or look at his labs nor does he want to know anything. He says he cannot handle dealing with this at this point. He feels that, when the doctor tells him it is time for treatment, then he will know what he needs to at that time. He does not mind me knowing all I want to, as long as I do not want to share with him.
I am hoping In time he will go to support groups, or get online here and talk!
Thanks for this site and any information you can share. To all those dealing with this horrible disease, may God bless all of you and your family's . Everyone has to keep fighting, they have to find a cure!
Doris
Thank you, for explaining the ratio! I appreciate all the help we can get here.
You ask about my husband's first labs. The first doctor we went to did not explain anything or give us a copy of labs! We then switched to Banner MD Anderson here in Arizona. The first labs there were from April 2014:
RBC 4.52
HGB 14.2
HCT 41.1
Bun 23
Creatinine 1.40
GFR 54
Calcium 8.9
Gamma M-Spike 0.7 g/dL (0.8 g/dL)
Kappa Light Chain 265.69
Kappa / Lambda 10.85.
It did have IgG numbers on the report.
My husbands labs from May 29 are
RBC 4.18
HGB 12.6
HCT 38.5
Bun 32
Creatinine 1.60
GFR 46
Calcium 9.2
Gamma-Spike 0.8 g/dL (8 g/L)
Kappa Light Chain 373.05
Kappa / Lambda 15.07
IgG 1176
IgG 236
IgG 32 .
His IgG numbers are slightly going up as well as the kappa light chains. At the same time, it appears that his Hgb and his GFR is going down, and creatinine is going up. The M-spike as always remained at 0.7 till this last lab, then it changed to 0.8.
I gather from what I am reading here that these are slight changes and the numbers can go up and down without meaning that the myeloma is getting worse. We have only had one bone scan done in December 2013. No MRI's or CT or other x-rays done.
You ask about his cytogenetic risk factor. I do not understand this part either. I will copy off the report. It says:
5 percent plasma cells consistent with multiple myeloma. Kappa restricted. Otherwise 50 percent cellularity in the marrow with absent iron stores. Cytogenetic so with FISH revealing trisomy 5p, trisomy 9 in 5 percent as as IGH rearrangement in 10 percent . Additional testing did not identify for, 4 or 14 , 6 or 11, 14 as the etiology of this IGH translocation. Karyotype, XY Skeletal survey negative for any bone lesions.
This report was done December 2013. After this report, we changed doctors in April 2014 to Banner MD Anderson . The labs above are from first labs there and the last labs there in May.
My husband has always had some lower back pain due to weight and one leg a couple inches shorter than the other leg, but he has complained of his back hurting more the last few weeks, and I noticed he is taking more over the counter aspirins. And ibuprofen lately, and got a TENS machine to put on his back to help with the pain. He has not told his doctor about this and does not want me to either. I feel this is important for the doctor to know and decide if related to this or not. My husband does not think it is related.
Having said that, at this point my husband does not read or look at his labs nor does he want to know anything. He says he cannot handle dealing with this at this point. He feels that, when the doctor tells him it is time for treatment, then he will know what he needs to at that time. He does not mind me knowing all I want to, as long as I do not want to share with him.
I am hoping In time he will go to support groups, or get online here and talk!
Thanks for this site and any information you can share. To all those dealing with this horrible disease, may God bless all of you and your family's . Everyone has to keep fighting, they have to find a cure!
Doris
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Ward211 - Name: Doris Warner
- Who do you know with myeloma?: My husband Gary
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 63
5 posts
• Page 1 of 1