In 2010 my PCP noticed that my WBC was low. He tested again in 3 months and it was lower, so he sent me to a hematologist, who didn't consider it low enough to do anything but monitor. It continued to decrease and in March of 2015 I was, again, referred to hematologist - and monitored. I never got sick (still don't) - not even a cold or the flu, even though I never get the flu shot! I insisted there was nothing wrong with me when he wanted me to have a bone marrow test. Finally, I gave in - and had the bone marrow aspiration and biopsy in January of this year.
I was in shock when told that I have multiple myeloma, Stage II. I had 22 xrays (not in my bones) and the 24-hour urine collection (not in my kidneys). My first Velcade / dex treatment was February 23, 2016. Since then, my WBC, RBC (I was anemic and didn't even know it!) and neutrophils have gone up and my immune system is not compromised. (I don't know why I didn't catch at least one germ floating around!)
If I understand kappa light chains, I think it may be time to do a happy dance. I meet with my hematologist/oncologist next week to get confirmation of that. He did tell me, on March 22, 2016, that I am definitely headed towards remission.
Results Jan 26 '16 Mar 22 '16
Serum Kappa FLC 735.33 5.36
Serum Lambda FLC 28.2 3.47
Serum K/L FLC Ratio 260.76 1.54
The only thing that bothers me now is that he wants me to have a stem cell transplant down the road, and I have read pros and cons for that. I don't want to be in the hospital for weeks, and it would be so hard on my husband as the institution where I would go for that is 2 hours away. I will talk about maintenance vs. stem cell transplant when the time comes that I have to make a decision.
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Brenda Crawford - Name: Brenda Crawford
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2/16/16
- Age at diagnosis: 67
Re: My story - diagnosed after low WBC
Hello Brenda:
I am sorry you had occasion to come here, but I hope you find information and support to help you in your ordeal. I will give you a couple of quick thoughts on the info you posted.
First, understand whether or not your doctor is a full-time myeloma practioner (a specialist) or a general oncologist. If he/she is not, you need to get a consult with one and change, or get one on your team to work with your generalist (if you are comfortable with that doctor).
Second, the more common type of multiple myeloma is M-spike defined. It is possible to have multiple myeloma with high light chains only, but that is less common (even rarer is what is called non-secretory, but I will not mention anything more on that now). If you have an M-spike, it is the simplest way to track your condition.
Third, it sounds like you have minimal symptoms, except for anemia, that is good. You should get the full work up of testing done (if you did not have them already). Some of the major ones include the FISH test, your albumin, and your beta-2 microglobulin.
Fourthly, doctors have different philosophies. I have no idea (as I am not a doctor) if transplant would be the right thing for you. I do know, however, that some doctors lean more towards up front transplants, and some doctors lean less towards it. There are very good doctors in both camps. If you are low risk, and you can get a good response to induction, there are many doctors out there who might not be so quick to go the transplant route. You definitely should consider your personal wishes and lifestyle when making that decision.
Good luck to you and I hope you stay without symptoms for a long, long time.
I am sorry you had occasion to come here, but I hope you find information and support to help you in your ordeal. I will give you a couple of quick thoughts on the info you posted.
First, understand whether or not your doctor is a full-time myeloma practioner (a specialist) or a general oncologist. If he/she is not, you need to get a consult with one and change, or get one on your team to work with your generalist (if you are comfortable with that doctor).
Second, the more common type of multiple myeloma is M-spike defined. It is possible to have multiple myeloma with high light chains only, but that is less common (even rarer is what is called non-secretory, but I will not mention anything more on that now). If you have an M-spike, it is the simplest way to track your condition.
Third, it sounds like you have minimal symptoms, except for anemia, that is good. You should get the full work up of testing done (if you did not have them already). Some of the major ones include the FISH test, your albumin, and your beta-2 microglobulin.
Fourthly, doctors have different philosophies. I have no idea (as I am not a doctor) if transplant would be the right thing for you. I do know, however, that some doctors lean more towards up front transplants, and some doctors lean less towards it. There are very good doctors in both camps. If you are low risk, and you can get a good response to induction, there are many doctors out there who might not be so quick to go the transplant route. You definitely should consider your personal wishes and lifestyle when making that decision.
Good luck to you and I hope you stay without symptoms for a long, long time.
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JPC - Name: JPC
Re: My story - diagnosed after low WBC
Hi Brenda,
Welcome to the forum.
Assuming your FLC numbers are expressed in mg/L, those are indeed happy-dance numbers and represent an impressive improvement to normality. How's your M-spike (assuming you have one) doing?
You can find a lot of discussions on this forum regarding whether to transplant or not. It's not an easy decision and folks on this forum routinely choose different paths.
This is a thread that outlines a lot of useful links to existing discussions, including links to various transplant and maintenance discussions.
https://myelomabeacon.org/forum/links-existing-forum-discussions-t3780.html
Welcome to the forum.
Assuming your FLC numbers are expressed in mg/L, those are indeed happy-dance numbers and represent an impressive improvement to normality. How's your M-spike (assuming you have one) doing?
You can find a lot of discussions on this forum regarding whether to transplant or not. It's not an easy decision and folks on this forum routinely choose different paths.
This is a thread that outlines a lot of useful links to existing discussions, including links to various transplant and maintenance discussions.
https://myelomabeacon.org/forum/links-existing-forum-discussions-t3780.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: My story - diagnosed after low WBC
Thank you so much for the responses!
My M-spike is 0.2 g/dL. Is that good? These were my e-link results. I meet with my doctor on April 5 and will discuss the M-spike with him at that time.
For now I am going to stick with him because I am very comfortable with him and the cancer center. He treats myeloma, but I don't find anything that he is a myeloma practitioner. If at any time I have an uncomfortable feeling about him, I will not hesitate to search elsewhere. My daughter is a RN (15 years - plenty of experience and knowledge) with a bachelors, so I drag her along with me on the appointments and she doesn't hesitate to speak up to him or me!
March 22, 2016 Bloodwork
Immunoglobulin G, Qn, Serum [L] 315 mg/dL 700-1600
Immunoglobulin A, Qn, Serum 196 mg/dL 87-352
Immunoglobulin M, Qn, Serum [L] 15 mg/dL 26-217
Protein, Total, Serum [L] 5.7 g/dL 6.0-8.5
Albumin 3.4 g/dL 3.2-5.6
Alpha-1-Globulin 0.3 g/dL 0.1-0.4
Alpha-2-Globulin 0.7 g/dL 0.4-1.2
Beta Globulin 1.0 g/dL 0.6-1.3
Gamma Globulin [L] 0.3 g/dL 0.5-1.6
M-Spike [H] 0.2 g/dL Not Observed
Globulin, Total 2.3 g/dL 2.0-4.5
A/G Ratio 1.5 0.7-2.0
Immunofixation Result, Serum IFEAK
Immunofixation shows IgA monoclonal protein
with kappa light chain specificity.
Please note: See report
Protein electrophoresis scan will follow via
computer, mail, or courier delivery.
Tests: (2) Free K+L Lt Chains,Qn,S (121137)
Free Kappa Lt Chains,S 5.36 mg/L 3.30-19.40
Free Lambda Lt Chains,S [L] 3.47 mg/L 5.71-26.30
Kappa/Lambda Ratio,S 1.54 0.26-1.65
Tests: (3) Folate (Folic Acid), Serum (002014)
Folate (Folic Acid), Serum 18.0 ng/mL >3.0
A serum folate concentration of less than 3.1 ng/mL is
considered to represent clinical deficiency.
My M-spike is 0.2 g/dL. Is that good? These were my e-link results. I meet with my doctor on April 5 and will discuss the M-spike with him at that time.
For now I am going to stick with him because I am very comfortable with him and the cancer center. He treats myeloma, but I don't find anything that he is a myeloma practitioner. If at any time I have an uncomfortable feeling about him, I will not hesitate to search elsewhere. My daughter is a RN (15 years - plenty of experience and knowledge) with a bachelors, so I drag her along with me on the appointments and she doesn't hesitate to speak up to him or me!
March 22, 2016 Bloodwork
Immunoglobulin G, Qn, Serum [L] 315 mg/dL 700-1600
Immunoglobulin A, Qn, Serum 196 mg/dL 87-352
Immunoglobulin M, Qn, Serum [L] 15 mg/dL 26-217
Protein, Total, Serum [L] 5.7 g/dL 6.0-8.5
Albumin 3.4 g/dL 3.2-5.6
Alpha-1-Globulin 0.3 g/dL 0.1-0.4
Alpha-2-Globulin 0.7 g/dL 0.4-1.2
Beta Globulin 1.0 g/dL 0.6-1.3
Gamma Globulin [L] 0.3 g/dL 0.5-1.6
M-Spike [H] 0.2 g/dL Not Observed
Globulin, Total 2.3 g/dL 2.0-4.5
A/G Ratio 1.5 0.7-2.0
Immunofixation Result, Serum IFEAK
Immunofixation shows IgA monoclonal protein
with kappa light chain specificity.
Please note: See report
Protein electrophoresis scan will follow via
computer, mail, or courier delivery.
Tests: (2) Free K+L Lt Chains,Qn,S (121137)
Free Kappa Lt Chains,S 5.36 mg/L 3.30-19.40
Free Lambda Lt Chains,S [L] 3.47 mg/L 5.71-26.30
Kappa/Lambda Ratio,S 1.54 0.26-1.65
Tests: (3) Folate (Folic Acid), Serum (002014)
Folate (Folic Acid), Serum 18.0 ng/mL >3.0
A serum folate concentration of less than 3.1 ng/mL is
considered to represent clinical deficiency.
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Brenda Crawford - Name: Brenda Crawford
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2/16/16
- Age at diagnosis: 67
Re: My story - diagnosed after low WBC
Brenda,
An M-spike of 0.2 g/dL is great! But it would be useful to go back and see what it was before you started treatment to get an idea of just how well it has responded to treatment.
You should also go back an compare your IgA level to what it was before. I say this because an IgA M-spike reading tends to be a bit unreliable (I won't go into the reasons for that here). So, folks will also look at their IgA levels to help corroborate how their IgA M-spike is truly doing.
I would also go back and look at your IgG and IgM levels before treatment and compare them to what they are now. Your IgG and IgM are currently suppressed, so you would want to understand why that is happening and if they were that way before you started treatment.
An M-spike of 0.2 g/dL is great! But it would be useful to go back and see what it was before you started treatment to get an idea of just how well it has responded to treatment.
You should also go back an compare your IgA level to what it was before. I say this because an IgA M-spike reading tends to be a bit unreliable (I won't go into the reasons for that here). So, folks will also look at their IgA levels to help corroborate how their IgA M-spike is truly doing.
I would also go back and look at your IgG and IgM levels before treatment and compare them to what they are now. Your IgG and IgM are currently suppressed, so you would want to understand why that is happening and if they were that way before you started treatment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: My story - diagnosed after low WBC
I agree. An M-protein of 0.2 g/dL is great. Also your kappa and lamba ratio look good too!
Best wishes for your continuing success with your treatment!
Best wishes for your continuing success with your treatment!
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: My story - diagnosed after low WBC
Hello Brenda:
Further to what Multibilly advised, understanding your M-spike and how its responding to treatment is important.
The more common type of multiple myeloma is M-spike dominated, and the light chain numbers are sort of secondary to the M-spike (that is they follow the M-spike). If your initial M-spike was something like 2, or 3, or 4, then you have that type of myeloma. In this case, a reduction to near zero partially through your treatment is very positive, and you want to drive it down more to complete response (zero M-spike) and something called minimum residual disease negative.
A little less common is light chain dominated multiple myeloma. If you had high light chains, but your M-spike was very close to the 0.2, then you have light chain dominated multiple myeloma. This is a little harder and a little more complicated to track, due to natural fluctuations in the light chain numbers. I think that it applies to something like 25% of the newly diagnosed patients.
I am glad to hear of the recent good results and hope they continue to improve.
Good luck
Further to what Multibilly advised, understanding your M-spike and how its responding to treatment is important.
The more common type of multiple myeloma is M-spike dominated, and the light chain numbers are sort of secondary to the M-spike (that is they follow the M-spike). If your initial M-spike was something like 2, or 3, or 4, then you have that type of myeloma. In this case, a reduction to near zero partially through your treatment is very positive, and you want to drive it down more to complete response (zero M-spike) and something called minimum residual disease negative.
A little less common is light chain dominated multiple myeloma. If you had high light chains, but your M-spike was very close to the 0.2, then you have light chain dominated multiple myeloma. This is a little harder and a little more complicated to track, due to natural fluctuations in the light chain numbers. I think that it applies to something like 25% of the newly diagnosed patients.
I am glad to hear of the recent good results and hope they continue to improve.
Good luck
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JPC - Name: JPC
Re: My story - diagnosed after low WBC
I am learning so much from y'all. Thanks!
Have looked over my results and don't see anything that says IgA, IgG, or IgM. Apparently it is listed differently on the lab sheet. However, I found that my M-spike level on February 1, 2016 was 66.6% and it says M-spike mg/24 hour - 145 mg. I will have to get my doctor to explain all this to me in more detail when I see him next week.
Have looked over my results and don't see anything that says IgA, IgG, or IgM. Apparently it is listed differently on the lab sheet. However, I found that my M-spike level on February 1, 2016 was 66.6% and it says M-spike mg/24 hour - 145 mg. I will have to get my doctor to explain all this to me in more detail when I see him next week.
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Brenda Crawford - Name: Brenda Crawford
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2/16/16
- Age at diagnosis: 67
Re: My story - diagnosed after low WBC
Brenda,
I know this gets confusing, but the M-spike you refer to in your last post above is not the same as the other serum M-spike you listed. The one you just referenced is from a urine test and measures something completely different than what your earlier serum M-spike of 0.2 g/dL measured. Whoever in the medical community decided to call both of these things "M-spikes" ought to be shot
Your IgG, IgA and IgM would be listed on a test that is called "quantified immunoglobulins" ... or something similar to that name.
Anyway, I think you now have enough stuff in hand to have a good discussion with your doc the next time you see him/her. Good luck.
I know this gets confusing, but the M-spike you refer to in your last post above is not the same as the other serum M-spike you listed. The one you just referenced is from a urine test and measures something completely different than what your earlier serum M-spike of 0.2 g/dL measured. Whoever in the medical community decided to call both of these things "M-spikes" ought to be shot
Your IgG, IgA and IgM would be listed on a test that is called "quantified immunoglobulins" ... or something similar to that name.
Anyway, I think you now have enough stuff in hand to have a good discussion with your doc the next time you see him/her. Good luck.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: My story - diagnosed after low WBC
Welcome to the forum, Brenda. As we always say ... very sorry you have to be here, but you've found a great place for information and support.
You've gotten the usual great advice and feedback from some of the most helpful people here in the forum - Multibilly and JPC. I don't have anything to say that's different from what they've said, but I just wanted to add that "IgG", "IgA", and "IgM" are just short names for "immunoglobulin G", "immunoglobulin A", and "immunoglobulin M". You had these tested in March because you listed the results in one of your earlier postings.
https://myelomabeacon.org/forum/my-story-diagnosed-low-wbc-t6990.html#p41949
So I think you're just missing them because they have a longer name in your lab reports.
Good luck!
You've gotten the usual great advice and feedback from some of the most helpful people here in the forum - Multibilly and JPC. I don't have anything to say that's different from what they've said, but I just wanted to add that "IgG", "IgA", and "IgM" are just short names for "immunoglobulin G", "immunoglobulin A", and "immunoglobulin M". You had these tested in March because you listed the results in one of your earlier postings.
https://myelomabeacon.org/forum/my-story-diagnosed-low-wbc-t6990.html#p41949
So I think you're just missing them because they have a longer name in your lab reports.
Good luck!
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