Hello everyone.
My name is Kristine and I would like to join in the conversation. Yesterday, my hematologist confirmed a diagnosis of IgA MGUS, pending a bone marrow biopsy scheduled for later this month.
My journey began in August with a skin biopsy to identify a recurring, persistent rash. The pathology report recommended additional blood analysis due to "neutrophilic fragmentation and a subpopulation of unusual appearing mononuclear cells suggesting a possible hematopoietic abnormality". Someone, somewhere probably knows what that means. One thing leads to another and the additional blood work identified an IgA spike.
They attempt to reassure me by offering the academic statistic that only 1% per annum of MGUS progresses into multiple myeloma. I remain worried, it's my style. On some days I feel as if the only thing this is really all about is that the medical profession needs to milk the insurance cash-cow for every single drop it can get. Other days, I know they are simply following diagnostic protocols.
Somehow, they forgot to give me the secret decoder ring along with the diagnosis. This forum has been so helpful by sharing real information and experience. It seems as it the people on this forum, sadly, out of necessity, rapidly become the real experts in plasma cells misbehaving. You are a wonderful resource for both information and human understanding. Thank you.
Forums
-
kap12 - Name: Kristine
- Who do you know with myeloma?: Myself (IgA MGUS)
- When were you/they diagnosed?: September 2016
Re: Introducing myself - just diagnosed with IgA MGUS
Welcome to the site, Kristine.
When I first came down with my blood disorders about ten years ago, I had two deficiencies caught on a routine CBC tests: low hemoglobin, and very low number of neutrophils.
Visual inspection of my blood cells by a pathologist indicated the presence of unusual looking lymphocytes with cytoplasmic extrusions; I also had hyper-segmented neutrophils. Hyper- segmented neutrophils contain six or more nuclear lobes; normal neutrophils have three or four nuclear lobes. These findings, along with the CBC test results, got me a quick referral to a hematologist. I am not sure, but your "fragmented neutrophils" may be the same as my hyper-segmented neutrophils.
The next step was to do a large battery of blood tests and have a bone marrow biopsy. My blood tests indicated that I had MGUS and my bone marrow biopsy ruled out myeloma. I ended up with a diagnosis of having a lymphoproliferative disorder because my bone marrow had a huge number of lymphocytes, most of which were odd looking.
It took ten years for my MGUS to switch to active myeloma. I still have my lymphoproliferative disorder, but now it has a name, hairy cell leukemia. My myeloma is the bigger threat to my health.
I mention all this because the pathologist who made the comments about your blood is really saying something very important: something is wrong with your blood cells. Your doctors now need to find out why. Your bone marrow biopsy should be very helpful in this regard.
One of the first things I did after finding out that I had some sort of blood disorder was to read a university level biology book. Otherwise I would have been overwhelmed. I learned the essentials of the blood system. Now I feel I can participate in my health care and make informed choices. Besides, I always wanted to know more about modern day biology. Fascinating subject.
Good luck with your journey,
Joseph
When I first came down with my blood disorders about ten years ago, I had two deficiencies caught on a routine CBC tests: low hemoglobin, and very low number of neutrophils.
Visual inspection of my blood cells by a pathologist indicated the presence of unusual looking lymphocytes with cytoplasmic extrusions; I also had hyper-segmented neutrophils. Hyper- segmented neutrophils contain six or more nuclear lobes; normal neutrophils have three or four nuclear lobes. These findings, along with the CBC test results, got me a quick referral to a hematologist. I am not sure, but your "fragmented neutrophils" may be the same as my hyper-segmented neutrophils.
The next step was to do a large battery of blood tests and have a bone marrow biopsy. My blood tests indicated that I had MGUS and my bone marrow biopsy ruled out myeloma. I ended up with a diagnosis of having a lymphoproliferative disorder because my bone marrow had a huge number of lymphocytes, most of which were odd looking.
It took ten years for my MGUS to switch to active myeloma. I still have my lymphoproliferative disorder, but now it has a name, hairy cell leukemia. My myeloma is the bigger threat to my health.
I mention all this because the pathologist who made the comments about your blood is really saying something very important: something is wrong with your blood cells. Your doctors now need to find out why. Your bone marrow biopsy should be very helpful in this regard.
One of the first things I did after finding out that I had some sort of blood disorder was to read a university level biology book. Otherwise I would have been overwhelmed. I learned the essentials of the blood system. Now I feel I can participate in my health care and make informed choices. Besides, I always wanted to know more about modern day biology. Fascinating subject.
Good luck with your journey,
Joseph
-
Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Introducing myself - just diagnosed with IgA MGUS
Thank you for your comments, Joe. Although I am not looking forward to having the bone marrow biopsy, I'll take any concrete information I can get my hands on. I probably won't understand what it means but it should eventually make sense.
I am definitely at the bottom of the learning curve. There is a whole new vocabulary surrounding all of this and I don't seem to have much of an aptitude for learning a new language. Doing a word by word search to decode the reports, aside from being a rather tedious process, has not yielded much in the way of my understanding. (So far, the most I have figured out, for sure, is that if you look at something through a microscope, you see cells.)
The two skin biopsies that launched this MGUS journey were the fifth and sixth done over the past decade. Although those were sent on for additional consultation, maybe due to the unusual cells, there is still no definitive diagnosis. I just had biopsy number seven and am looking forward to hearing what the next "best guess" might be. Hopefully bone marrow biopsies prove somewhat more definitive.
Joe, I am so sorry to hear that your MGUS eventually progressed into myeloma. I hope you are now responding well to treatment.
Take good care.
I am definitely at the bottom of the learning curve. There is a whole new vocabulary surrounding all of this and I don't seem to have much of an aptitude for learning a new language. Doing a word by word search to decode the reports, aside from being a rather tedious process, has not yielded much in the way of my understanding. (So far, the most I have figured out, for sure, is that if you look at something through a microscope, you see cells.)
The two skin biopsies that launched this MGUS journey were the fifth and sixth done over the past decade. Although those were sent on for additional consultation, maybe due to the unusual cells, there is still no definitive diagnosis. I just had biopsy number seven and am looking forward to hearing what the next "best guess" might be. Hopefully bone marrow biopsies prove somewhat more definitive.
Joe, I am so sorry to hear that your MGUS eventually progressed into myeloma. I hope you are now responding well to treatment.
Take good care.
-
kap12 - Name: Kristine
- Who do you know with myeloma?: Myself (IgA MGUS)
- When were you/they diagnosed?: September 2016
Re: Introducing myself - just diagnosed with IgA MGUS
Hi Kristine:
I see you are in the MGUS stage. That is where we started at about 10 years ago when we learned this for my wife. It is important for you to understand this very tricky disease, but you do have some time. I am sure that you will move up quickly in your understanding.
Some patients "learn" about multiple myeloma for the first time in the emergency room, or similar situation, with broken bones and/or life threatening conditions. Even in that scenario, some of the patients still do very well. So please keep on cracking away.
In our situation, we were a little bit "brainwashed" by the statistics that say that multiple myeloma advances very slowly (1% per year) . If you interpret this a certain way, you don't have to worry for about 99 years (or maybe 50 years on an average basis), however, as I stated, multiple myeloma is very tricky. After being MGUS for about 7 or 8 years, and smoldering for about a year, we were still unprepared when my dear wife turned active a little bit more than 2 years ago, now. Since that time, we have been researching with a vengeance.
So I urge you to try and stay ahead of the curve and learn as much as you can. At this point, it certainly sounds like there is no need for rash decisions or panic. However, try and learn as much as you can as soon as you can, so you and your loved ones can be an effective advocate when dealing with the doctors and the insurances. Good luck to you.
I see you are in the MGUS stage. That is where we started at about 10 years ago when we learned this for my wife. It is important for you to understand this very tricky disease, but you do have some time. I am sure that you will move up quickly in your understanding.
Some patients "learn" about multiple myeloma for the first time in the emergency room, or similar situation, with broken bones and/or life threatening conditions. Even in that scenario, some of the patients still do very well. So please keep on cracking away.
In our situation, we were a little bit "brainwashed" by the statistics that say that multiple myeloma advances very slowly (1% per year) . If you interpret this a certain way, you don't have to worry for about 99 years (or maybe 50 years on an average basis), however, as I stated, multiple myeloma is very tricky. After being MGUS for about 7 or 8 years, and smoldering for about a year, we were still unprepared when my dear wife turned active a little bit more than 2 years ago, now. Since that time, we have been researching with a vengeance.
So I urge you to try and stay ahead of the curve and learn as much as you can. At this point, it certainly sounds like there is no need for rash decisions or panic. However, try and learn as much as you can as soon as you can, so you and your loved ones can be an effective advocate when dealing with the doctors and the insurances. Good luck to you.
-
JPC - Name: JPC
Re: Introducing myself - just diagnosed with IgA MGUS
Thank you for your comments, JPC. Your love for your wife shines through your words. I hope she is doing well.
They certainly do present the odds of MGUS progressing into multiple myeloma as giving one little to worry about. I know that I'll worry anyway, I'm just a worrier. Hopefully, as I gain more insight into what is happening, I'll be able to relax a little. This is really new to me and feels a bit overwhelming.
Learning all of the new vocabulary words and looking at so many blood test numbers feels like doing homework for classes I didn't take the prerequisites for. This forum has certainly become my study new group. I am already grateful to everyone here for generously sharing their personal story and experience.
Take good care, JPC.
They certainly do present the odds of MGUS progressing into multiple myeloma as giving one little to worry about. I know that I'll worry anyway, I'm just a worrier. Hopefully, as I gain more insight into what is happening, I'll be able to relax a little. This is really new to me and feels a bit overwhelming.
Learning all of the new vocabulary words and looking at so many blood test numbers feels like doing homework for classes I didn't take the prerequisites for. This forum has certainly become my study new group. I am already grateful to everyone here for generously sharing their personal story and experience.
Take good care, JPC.
-
kap12 - Name: Kristine
- Who do you know with myeloma?: Myself (IgA MGUS)
- When were you/they diagnosed?: September 2016
Re: Introducing myself - just diagnosed with IgA MGUS
I think it is much better when they catch the diagnosis at the MGUS stage and not full-blown multiple myeloma, so consider yourself lucky in this regard. Now you can be monitored and get treatment as soon as needed. When I was diagnosed, 60% of my bone marrow was cancer cells (Stage 2, IgA kappa).
Many new treatments have arrived in recent years, so stay optimistic that there will be good treatments down the road if you need it. If you get treatment in the earliest stages, you can hopefully avoid bone damage, anemia, and kidney problems.
Myeloma is a huge learning curve, and the treatments are changing all the time, so 'continuing education' is needed.
Best of luck to you,
RT
Many new treatments have arrived in recent years, so stay optimistic that there will be good treatments down the road if you need it. If you get treatment in the earliest stages, you can hopefully avoid bone damage, anemia, and kidney problems.
Myeloma is a huge learning curve, and the treatments are changing all the time, so 'continuing education' is needed.
Best of luck to you,
RT
-
RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Introducing myself - just diagnosed with IgA MGUS
Thank you for your comments, RT. Your words just helped shift my perspective. I had not really considered the opportunity of having time to to learn about multiple myeloma. It is very complex disease and understanding more should prove to be very valuable, if the time comes that the knowledge is put into play.
A shift in perspective could not have come at a better time. It has been a rough day for me. The results of the skin biopsy that kicked off this MGUS journey have just added another layer of complexity to my already overwhelmed brain. The results confirmed a diagnosis of recurrent Sweet's syndrome. As far as I can understand, Sweet's syndrome is an auto-inflammatory (not autoimmune) disease. According to an article I found, Sweet's syndrome it may be associated with another bone marrow disorder, myelodysplastic syndrome, or MDS.
As much as I am dreading the bone marrow biopsy next week, I am beginning to feel that it may be a very good and very timely idea. I wonder if having both MGUS and Sweet's would put me at a higher risk of progression.
Radiant Tiger, you sound very encouraging about the treatments that are currently available. I do appreciate hearing that. I hope they are working well for you! Take good care.
A shift in perspective could not have come at a better time. It has been a rough day for me. The results of the skin biopsy that kicked off this MGUS journey have just added another layer of complexity to my already overwhelmed brain. The results confirmed a diagnosis of recurrent Sweet's syndrome. As far as I can understand, Sweet's syndrome is an auto-inflammatory (not autoimmune) disease. According to an article I found, Sweet's syndrome it may be associated with another bone marrow disorder, myelodysplastic syndrome, or MDS.
As much as I am dreading the bone marrow biopsy next week, I am beginning to feel that it may be a very good and very timely idea. I wonder if having both MGUS and Sweet's would put me at a higher risk of progression.
Radiant Tiger, you sound very encouraging about the treatments that are currently available. I do appreciate hearing that. I hope they are working well for you! Take good care.
-
kap12 - Name: Kristine
- Who do you know with myeloma?: Myself (IgA MGUS)
- When were you/they diagnosed?: September 2016
Re: Introducing myself - just diagnosed with IgA MGUS
Due to my newly diagnosed IgA kappa MGUS, I think there are going to be a lot more blood test in my future. I have been trying to figure out both what the initial blood test numbers mean and what I should be paying the most attention to in subsequent tests. What I think I understand is that I need to watch IgG, IgM, IgA, M-spike, and free serum light chain, especially the ratio. If there are other things I should keep my eye on, please tell me about them.
I recently reviewed some information on an older topic and, at this time, the content was quite over my head. The information was, at least in part, about heavy-light ratios, but I was unable to find anything in my blood test results labeled HLC. Could that be a separate test that I was not given? Also, is that the same as looking at the involved IgA and the uninvolved IgG and IgM to see if there is suppression?
The lecture also discussed IFE, which I found a reference to in my blood test results. It said only "see note". I was not given access to the notes.
My blood test results appear to show rather modest deviations from the norm, especially when compared to much of what I have seen on this forum. Values that I see others frequently include in their questions are listed below. Are these what I should be tracking over the long term?
I am trying my best to wrap my head around this and any help you can offer would be greatly appreciated. If I am not yet understanding anything it would not hurt my feelings in the least to find that out.
WBC - 4.52 (4.08 - 8.88)
RBC - 4.07 (3.95 - 5.31)
IgG - 559 mg/DL (758 -1612)
IgM - 39 mg/DL (40 - 230)
IgA - 617 mg/DL (71 - 397)
M-spike - 0.6 g/DL
Free serum light chain
Ratio - 1:63 (0.26 - 1.65)
Kappa - 1.53 (0.33 - 1.94)
Lambda - 0.93 (0.57 - 2.63)
Another line item said M-spike, SPE 8.0. I have no idea what that refers to. All of the urine (random sample) quantities said "detected"
Again, Thank you.
I recently reviewed some information on an older topic and, at this time, the content was quite over my head. The information was, at least in part, about heavy-light ratios, but I was unable to find anything in my blood test results labeled HLC. Could that be a separate test that I was not given? Also, is that the same as looking at the involved IgA and the uninvolved IgG and IgM to see if there is suppression?
The lecture also discussed IFE, which I found a reference to in my blood test results. It said only "see note". I was not given access to the notes.
My blood test results appear to show rather modest deviations from the norm, especially when compared to much of what I have seen on this forum. Values that I see others frequently include in their questions are listed below. Are these what I should be tracking over the long term?
I am trying my best to wrap my head around this and any help you can offer would be greatly appreciated. If I am not yet understanding anything it would not hurt my feelings in the least to find that out.
WBC - 4.52 (4.08 - 8.88)
RBC - 4.07 (3.95 - 5.31)
IgG - 559 mg/DL (758 -1612)
IgM - 39 mg/DL (40 - 230)
IgA - 617 mg/DL (71 - 397)
M-spike - 0.6 g/DL
Free serum light chain
Ratio - 1:63 (0.26 - 1.65)
Kappa - 1.53 (0.33 - 1.94)
Lambda - 0.93 (0.57 - 2.63)
Another line item said M-spike, SPE 8.0. I have no idea what that refers to. All of the urine (random sample) quantities said "detected"
Again, Thank you.
-
kap12 - Name: Kristine
- Who do you know with myeloma?: Myself (IgA MGUS)
- When were you/they diagnosed?: September 2016
Re: Introducing myself - just diagnosed with IgA MGUS
Hi Kristine,
In addition to tracking your IgG, IgM, IgA, M-spike, and free serum light chains, it's good to track your hemoglobin, creatinine, and calcium levels to see if you might be developing any CRAB damage.
Note that your IgG and IgM are somewhat depressed, which can signify a condition known as immunoparesis. You want to keep an eye on those levels since immunoparesis can impair your immunity.
With IgA disorders, the serum M-spike level can sometimes be overstated for reasons I won't go into here. An M-spike of 0.6 g/dL = 600 mg/dL and your total IgA is reading as 617 mg/dL. Keeping in mind that the total IgA level = healthy IgA + M-spike, it seems likely that your serum M-spike is slightly overstated.
To get around this IgA M-spike measurement problem, doctors sometimes use a newer test called the Hevylite assay to track IgA patients. This is the test that measures heavy / light chain pair values and heavy / light ratios that you alluded to. You may want to ask your doctor about this newer test when you see him/her next. I know this new test is available at Labcorp labs, but I don't believe it is available at Quest Diagnostics labs.
In addition to tracking your IgG, IgM, IgA, M-spike, and free serum light chains, it's good to track your hemoglobin, creatinine, and calcium levels to see if you might be developing any CRAB damage.
Note that your IgG and IgM are somewhat depressed, which can signify a condition known as immunoparesis. You want to keep an eye on those levels since immunoparesis can impair your immunity.
With IgA disorders, the serum M-spike level can sometimes be overstated for reasons I won't go into here. An M-spike of 0.6 g/dL = 600 mg/dL and your total IgA is reading as 617 mg/dL. Keeping in mind that the total IgA level = healthy IgA + M-spike, it seems likely that your serum M-spike is slightly overstated.
To get around this IgA M-spike measurement problem, doctors sometimes use a newer test called the Hevylite assay to track IgA patients. This is the test that measures heavy / light chain pair values and heavy / light ratios that you alluded to. You may want to ask your doctor about this newer test when you see him/her next. I know this new test is available at Labcorp labs, but I don't believe it is available at Quest Diagnostics labs.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Introducing myself - just diagnosed with IgA MGUS
Hi Kristine,
I think you are right in characterizing your test results as showing “modest deviations from the norm.” Here are a few of my test results just prior to my starting chemotherapy a couple of months ago. (I’m using the same units as you used.)
IgG 210 mg/dL (700 - 1600)
IgM 10 mg/dL (40 - 230)
IgA 4,380 mg/dL (70 - 400)
My kappa-lambda free light chain ratio was 35 (normal is somewhere between 0.26 and 1.65).
Although my results were considered high, I was not diagnosed with active myeloma until I had a bone marrow biopsy that showed my marrow was 50% plasma cells (should be 1 to 2%). My excess plasma cells were considered to be cancerous. This was confirmed with cytogenetic studies that showed the presence of the chromosomal translocation (4;14).
To add to JPC’s comments about the odds of MGUS switching over to active myeloma, I can remember being told the same story: the odds are so low at 1% per year that I need not worry about this. Well, I worried nevertheless, especially in the light of the circumstances that I already had a serious problem with my blood cells. In retrospect, I could see my M protein burden drifting upward over the years. As I have a very strong science background, I even developed an algorithm to see if my increases were being exponential in character or drifting in character. Eventually they became exponential prior to diagnosis of active myeloma.
As the others are saying, keep good records. I use a spreadsheet approach. And learn as much as possible about blood disorders in general.
Joe
I think you are right in characterizing your test results as showing “modest deviations from the norm.” Here are a few of my test results just prior to my starting chemotherapy a couple of months ago. (I’m using the same units as you used.)
IgG 210 mg/dL (700 - 1600)
IgM 10 mg/dL (40 - 230)
IgA 4,380 mg/dL (70 - 400)
My kappa-lambda free light chain ratio was 35 (normal is somewhere between 0.26 and 1.65).
Although my results were considered high, I was not diagnosed with active myeloma until I had a bone marrow biopsy that showed my marrow was 50% plasma cells (should be 1 to 2%). My excess plasma cells were considered to be cancerous. This was confirmed with cytogenetic studies that showed the presence of the chromosomal translocation (4;14).
To add to JPC’s comments about the odds of MGUS switching over to active myeloma, I can remember being told the same story: the odds are so low at 1% per year that I need not worry about this. Well, I worried nevertheless, especially in the light of the circumstances that I already had a serious problem with my blood cells. In retrospect, I could see my M protein burden drifting upward over the years. As I have a very strong science background, I even developed an algorithm to see if my increases were being exponential in character or drifting in character. Eventually they became exponential prior to diagnosis of active myeloma.
As the others are saying, keep good records. I use a spreadsheet approach. And learn as much as possible about blood disorders in general.
Joe
-
Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
12 posts
• Page 1 of 2 • 1, 2
Return to Member Introductions / Personal Stories