I was diagnosed with smoldering myeloma in June after 4 months of seeking treatment for a change in facial sensation. I have heard other people mention neuropathy in relation to myeloma, but it usually I only see stories that involve the hands and feet. My face would feel like I was being stung by sleet (especially when I was in a loud environment). I had a brain MRI, which revealed some UBOs (unidentified bright objects). I saw different neurologists. I had a lumbar puncture, which revealed the presence of a monoclonal protein. And they also ran blood tests that showed that my kappa free light chains were extremely high.
I was then referred to the hematologist, had immunoglobulin free light chain test, and then the bone marrow biopsy. I was then diagnosed with smoldering myeloma. After which I had the skeletal survey, spinal MRI, and PET scan. All was fairly clear except for some arthritis, a bone island and hyper metabolic activity in lymph nodes in my chest.
Now I wasn't prepared to ask questions when I was diagnosed, but I am going back to the hematologist-oncologist in 2 weeks. But I was wondering with numbers like mine, what I can expect?
I am having trouble reading the bone marrow biopsy report. I think that my percentage is 15%. I think that I remember my doctor said something about 15% when I was in there. But my immunoglobulin levels were :
April:
Kappa - 104.87 mg/dl (0.33-1.94)
Lambda - 1.44
Ratio - 72.83
June:
Kappa - 112.40 mg/dl (0.33-1.94)
Lambda - 1.38 mg/dl
Ratio - 81.45
My paraprotein was always 0.7 g/dL, which seems to be very low according to my reading. But is that common for the paraprotein to be low when the free light chains are that high? I am so confused!
I don't know a single person with myeloma, so any advice or experiences relevant to my situation would be really appreciated.
Forums
9 posts
• Page 1 of 1
-
ANF921 - Name: Anastasia
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 42
Re: Newly diagnosed with smoldering myeloma - confused
Hi ANF921.
I just read your post and wanted to give you some words of encouragement.
I was diagnosed with smoldering multiple myeloma a little over 3 years ago, in July 2013. I started treatment June 2015 when I volunteered for a clinical trial. The trial was to determine which treatment was more effective: with meds alone or, or meds with a stem cell transplant. I dropped out of the trial after two and a half months because I developed blood clots in both lungs and was hospitalized for 8 days to get them to dissolve.
Yes, I know I said I was going to give some words of encouragement, and so far it doesn't sound like I've reached that goal for you. Here's the encouragement: Keep a positive attitude. Find out as much as you can about myeloma. Go to the best cancer center in your area and make sure you are under the care of a myeloma specialist. Write down questions to bring with you at your next doctor visit. Bring a family member or friend to that doctors appointment because it's best to have another person there to listen to the doctor and ask questions, too. You've already had a lot of the pre-treatment tests, but there's a lot more coming.
My myeloma was diagnosed because of anemia that my primary care doc was treating with daily iron supplements in pill form and blood work every 6 months. He's sent me to the hematologist and I consider my primary care doc as my life saver. The first hematologist I saw was so harried I left after 2 months and immediately made an appointment to be seen by a myeloma specialist at Sloan Kettering in New York City, where I've been going for 3 years.
I want to repeat this: Find out as much as you can about myeloma. You have to be your own best advocate, which is hard when faced with this diagnosis, but it's imperative. Stay positive. Enjoy life, every day. As you read the articles and forum postings on this site, you'll find quite a few people who were diagnosed many years ago and they're still here to share their stories and give encouragement to us all.
I'm currently on Revlimid for the multiple myeloma and Eliquis (apixaban) to help prevent blood clots. I also go for Zometa infusions monthly. Zometa is a bone strengthener (bisphosphonate) which in January I'll be on for a full year.
I looked at your kappa numbers and mine are a bit higher. Have you done the 24-hour urine test yet for M Spike numbers?
I hope I was somewhat informative and encouraging. Please feel free to ask more questions here in the forum if you think I or anyone else can answer them or share relevant experiences. Good luck on your next doctor visit.
Pat
I just read your post and wanted to give you some words of encouragement.
I was diagnosed with smoldering multiple myeloma a little over 3 years ago, in July 2013. I started treatment June 2015 when I volunteered for a clinical trial. The trial was to determine which treatment was more effective: with meds alone or, or meds with a stem cell transplant. I dropped out of the trial after two and a half months because I developed blood clots in both lungs and was hospitalized for 8 days to get them to dissolve.
Yes, I know I said I was going to give some words of encouragement, and so far it doesn't sound like I've reached that goal for you. Here's the encouragement: Keep a positive attitude. Find out as much as you can about myeloma. Go to the best cancer center in your area and make sure you are under the care of a myeloma specialist. Write down questions to bring with you at your next doctor visit. Bring a family member or friend to that doctors appointment because it's best to have another person there to listen to the doctor and ask questions, too. You've already had a lot of the pre-treatment tests, but there's a lot more coming.
My myeloma was diagnosed because of anemia that my primary care doc was treating with daily iron supplements in pill form and blood work every 6 months. He's sent me to the hematologist and I consider my primary care doc as my life saver. The first hematologist I saw was so harried I left after 2 months and immediately made an appointment to be seen by a myeloma specialist at Sloan Kettering in New York City, where I've been going for 3 years.
I want to repeat this: Find out as much as you can about myeloma. You have to be your own best advocate, which is hard when faced with this diagnosis, but it's imperative. Stay positive. Enjoy life, every day. As you read the articles and forum postings on this site, you'll find quite a few people who were diagnosed many years ago and they're still here to share their stories and give encouragement to us all.
I'm currently on Revlimid for the multiple myeloma and Eliquis (apixaban) to help prevent blood clots. I also go for Zometa infusions monthly. Zometa is a bone strengthener (bisphosphonate) which in January I'll be on for a full year.
I looked at your kappa numbers and mine are a bit higher. Have you done the 24-hour urine test yet for M Spike numbers?
I hope I was somewhat informative and encouraging. Please feel free to ask more questions here in the forum if you think I or anyone else can answer them or share relevant experiences. Good luck on your next doctor visit.
Pat
-
Pat Tesone - Name: Pat Tesone
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 24, 2013
- Age at diagnosis: 62
Re: Newly diagnosed with smoldering myeloma - confused
Hi Anastasia,
Welcome to the forum from a fellow smolderer.
Pat provided some good feedback, especially regarding seeking out a multiple myeloma specialist.
Multiple myeloma as its various stages can present in all kinds of different ways. Some folks can have no serum M-spike and only free light chain (FLC) involvement. Others can have no M-spike and no FLC involvement. And there can be variations on these themes with varying degrees of M-spike and FLC involvement. So, you simply seem to have a very modest M-spike with more of an emphasis on the FLC involvement. In any case, it's not that peculiar to have this sort of a presentation.
Based on only the two data points you provided, your free light chain ratio seems to be on the rise. But one's free light chain numbers can fluctuate quite a bit over time, so don't assume that two data points make a trend. You can see from my numbers that my free light chain values have varied quite a bit over time.
Welcome to the forum from a fellow smolderer.
Pat provided some good feedback, especially regarding seeking out a multiple myeloma specialist.
Multiple myeloma as its various stages can present in all kinds of different ways. Some folks can have no serum M-spike and only free light chain (FLC) involvement. Others can have no M-spike and no FLC involvement. And there can be variations on these themes with varying degrees of M-spike and FLC involvement. So, you simply seem to have a very modest M-spike with more of an emphasis on the FLC involvement. In any case, it's not that peculiar to have this sort of a presentation.
Based on only the two data points you provided, your free light chain ratio seems to be on the rise. But one's free light chain numbers can fluctuate quite a bit over time, so don't assume that two data points make a trend. You can see from my numbers that my free light chain values have varied quite a bit over time.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed with smoldering myeloma - confused
Welcome aboard, Anastasia
You certainly have had an interesting path into smoldering myeloma. You will want to be well monitored to see if progresses. It may not, although your 15% (plasma cell percentage?) is higher than normal for a bone marrow biopsy. Mine was 50% plasma cells when I switched out of smoldering myeloma into the roaring kind.
I would also like to say that I experience peripheral neuropathy in my lips of all places. I also have it in my hands and feet. My neuropathy is of the numbing and tingling kind, not painful … knock on wood.
Joseph
You certainly have had an interesting path into smoldering myeloma. You will want to be well monitored to see if progresses. It may not, although your 15% (plasma cell percentage?) is higher than normal for a bone marrow biopsy. Mine was 50% plasma cells when I switched out of smoldering myeloma into the roaring kind.
I would also like to say that I experience peripheral neuropathy in my lips of all places. I also have it in my hands and feet. My neuropathy is of the numbing and tingling kind, not painful … knock on wood.
Joseph
-
Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Newly diagnosed with smoldering myeloma - confused
Thank you all for your words of encouragement. It was kind of you all to respond.
Joseph, did your doctor ever provide an explanation for the neuropathy? I am just wondering if it is just the protein in the blood or actually damage to the nerves.
Multibilly, thank you for posting your results. I was wondering about seeing a trend in the increasing kappa free light chain and kappa/ lambda ratio. I was wondering if it was possible to see a reduction in free light chain and kappa / lambda ratio. I am particularly interested in the ratio, since I'm close to the ratio of 100, and I have read that a ratio of 100 is a myeloma defining event.
Pat, I did have the 24-hour collection as well. There was protein there, it was on the highest side of acceptable, but my doctor noted the results as normal. I plan to ask about it when I go back in two weeks from now. I know that you said that there are many tests to come, but I was wondering what kind of tests and with what frequency. More MRI's? More PETs? More bone marrow biopsies?
I know that there are a number of things that I want to ask when I go in. I want to ask about the results of the FISH test, which I have tried to google, but it only leads to my being totally confused.
This may seem strange, but I have been so busy this summer that I have barely had a chance to worry about any of this. But now, with my next appointment coming up, I'm just trying to get all my thoughts together so I'm prepared with the right questions.
Joseph, did your doctor ever provide an explanation for the neuropathy? I am just wondering if it is just the protein in the blood or actually damage to the nerves.
Multibilly, thank you for posting your results. I was wondering about seeing a trend in the increasing kappa free light chain and kappa/ lambda ratio. I was wondering if it was possible to see a reduction in free light chain and kappa / lambda ratio. I am particularly interested in the ratio, since I'm close to the ratio of 100, and I have read that a ratio of 100 is a myeloma defining event.
Pat, I did have the 24-hour collection as well. There was protein there, it was on the highest side of acceptable, but my doctor noted the results as normal. I plan to ask about it when I go back in two weeks from now. I know that you said that there are many tests to come, but I was wondering what kind of tests and with what frequency. More MRI's? More PETs? More bone marrow biopsies?
I know that there are a number of things that I want to ask when I go in. I want to ask about the results of the FISH test, which I have tried to google, but it only leads to my being totally confused.
This may seem strange, but I have been so busy this summer that I have barely had a chance to worry about any of this. But now, with my next appointment coming up, I'm just trying to get all my thoughts together so I'm prepared with the right questions.
-
ANF921 - Name: Anastasia
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 42
Re: Newly diagnosed with smoldering myeloma - confused
Anastasia,
Reading and comprehending FISH and chromosome analysis reports can be very challenging for a layman. What I suggest you do on that subject is have your hematologist go over your bone marrow biopsy report page-by-page and have him point out any genetic abnormalities that were found that may impact your prognosis. I would then underline on the report the specific abnormalities that your doctor pointed out.
You should walk away knowing what your bone marrow plasma cell percentage is and have a list of any relevant genetic abnormalities (e.g. t(4;14), 1q+, del17p, etc) that would impact your prognosis. Note that you could very well not have any genetic abnormalities to worry about.
Reading and comprehending FISH and chromosome analysis reports can be very challenging for a layman. What I suggest you do on that subject is have your hematologist go over your bone marrow biopsy report page-by-page and have him point out any genetic abnormalities that were found that may impact your prognosis. I would then underline on the report the specific abnormalities that your doctor pointed out.
You should walk away knowing what your bone marrow plasma cell percentage is and have a list of any relevant genetic abnormalities (e.g. t(4;14), 1q+, del17p, etc) that would impact your prognosis. Note that you could very well not have any genetic abnormalities to worry about.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed with smoldering myeloma - confused
Anastasia,
When I talked to my hematologist about my peripheral neuropathy, I got the feeling that my neuropathy is associated with the buildup of protein molecules in my system due to the myeloma and that there is some damage to my nerves because of this. Even if I were to magically lose all my excess proteins, some nerves would remain impaired, probably for a long time.
From what I’ve read on this site, many people experience neuropathy, most of it seems to be of the numbing / tingling variety, not the painful variety you are experiencing. Some people are reporting relief either with medicines or passage of time. Hope is there. Some people are also acquiring peripheral neuropathy due to chemo drugs. I am using one now (Velcade) that has this as a potential side effect.
Also, I should have commented earlier about your statement that “My paraprotein was always 0.7 g/dL, which seems to be very low according to my reading.” I do not think you should be viewing this as a low level of paraprotein. It is high. Healthy people have a level of zero. I had a level of 0.7 g/dL (7 g/L) for nearly a decade before it shot up to 4 g/dL (40 g/L). It is a sure sign that something is amiss. In my case, I had MGUS alongside clonal expansions of lymphocytes for ten years. This year my MGUS ended and I moved into active myeloma territory, a most unwelcome progression for me.
Joseph
When I talked to my hematologist about my peripheral neuropathy, I got the feeling that my neuropathy is associated with the buildup of protein molecules in my system due to the myeloma and that there is some damage to my nerves because of this. Even if I were to magically lose all my excess proteins, some nerves would remain impaired, probably for a long time.
From what I’ve read on this site, many people experience neuropathy, most of it seems to be of the numbing / tingling variety, not the painful variety you are experiencing. Some people are reporting relief either with medicines or passage of time. Hope is there. Some people are also acquiring peripheral neuropathy due to chemo drugs. I am using one now (Velcade) that has this as a potential side effect.
Also, I should have commented earlier about your statement that “My paraprotein was always 0.7 g/dL, which seems to be very low according to my reading.” I do not think you should be viewing this as a low level of paraprotein. It is high. Healthy people have a level of zero. I had a level of 0.7 g/dL (7 g/L) for nearly a decade before it shot up to 4 g/dL (40 g/L). It is a sure sign that something is amiss. In my case, I had MGUS alongside clonal expansions of lymphocytes for ten years. This year my MGUS ended and I moved into active myeloma territory, a most unwelcome progression for me.
Joseph
-
Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Newly diagnosed with smoldering myeloma - confused
Welcome to the Beacon. It has been a source of good information for me since I found it.
I want to send a positive shout-out to your primary care physician for being curious and on the ball. My multiple myeloma was diagnosed the same way ... because my primary care physician is very careful. Before I had surgery in December 2014, he reviewed the blood work from the 4 latest pre-op blood tests and called me. He said that every time I had blood drawn, I was a little more anemic, and it should be looked into. He referred me to an exceptional oncologist who took over and did all of the relevant tests, including the bone marrow aspiration and biopsy.
While I wasn't pleased to have multiple myeloma, at that point, January 2015, I had no symptoms that were visible to me and still don't. My lambda light chains were "through the roof," so I started treatment in April 2015. Now in September 2016 I'm still being treated, although with a different drug, and I'm doing well.
I join the others who encourage you to be curious also and learn everything you can about multiple myeloma and your particular disease. We can help, but you and your loved ones will be your best advocates as you begin this journey.
Good Luck.
Barbara
I want to send a positive shout-out to your primary care physician for being curious and on the ball. My multiple myeloma was diagnosed the same way ... because my primary care physician is very careful. Before I had surgery in December 2014, he reviewed the blood work from the 4 latest pre-op blood tests and called me. He said that every time I had blood drawn, I was a little more anemic, and it should be looked into. He referred me to an exceptional oncologist who took over and did all of the relevant tests, including the bone marrow aspiration and biopsy.
While I wasn't pleased to have multiple myeloma, at that point, January 2015, I had no symptoms that were visible to me and still don't. My lambda light chains were "through the roof," so I started treatment in April 2015. Now in September 2016 I'm still being treated, although with a different drug, and I'm doing well.
I join the others who encourage you to be curious also and learn everything you can about multiple myeloma and your particular disease. We can help, but you and your loved ones will be your best advocates as you begin this journey.
Good Luck.
Barbara
-
barbaramh - Name: Barbara Hoffman
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 1/5/2015
- Age at diagnosis: 75
Re: Newly diagnosed with smoldering myeloma - confused
I had my blood drawn the other day in preparation for my appointment on Tuesday with the hematologist. She released the results to me today.
Kappa free light chain - 129.61 mg/dl
Lambda free light chain - 1.13 mg/dl
Kappa/lambda free light chain ratio - 114.70
So, we shall see.
Kappa free light chain - 129.61 mg/dl
Lambda free light chain - 1.13 mg/dl
Kappa/lambda free light chain ratio - 114.70
So, we shall see.
-
ANF921 - Name: Anastasia
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 42
9 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories