Hi
I am new to the forum. My sister was diagnosed with smoldering myeloma 5 years ago, she still has no lesions but her igg is 5500, her mspike 3.8 and her flc ratio 1000 (kappa 43, lambda .03. Is this high--seems to be. And when does one start treatment? Her hemoglobin also runs around 10.5-11. Appreciate any input.
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Re: Flc ratio
Hi, I am sure a doctor will answer your questions specifically, but what were the results of the bone marrow biopsy? That would provide a lot of critical info. with regards to the level of plasma cell infiltration (i.e. over 10%). If you do not presently see a myeloma expert, I would advise you to do so. Make an appointment. now. This would ensure all necessary testing be done and you can make an educated decision about your treatment options. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Flc ratio
Hi Rex, I was diagnosed as having smoldering myeloma last year and I progressed to active myeloma in about eight months. I am currently in a special clinical trial at the NIH using carfilzomib. When I progressed, my FLC's exploded and the ratio went sky high. Yours does seem high as do your other numbers but what was the trend over the past five years and what does your present doctor say? Is he a myeloma expert or a general onc? There does seem to be anemia as well pursuant to the CRAB criteria. However, only a doctor can make sense of it all and I would strongly urge you to see a myeloma expert or two before you start any treatment as there are various treatment approaches and philosophies. It is not so cut and dried as in other diseases. In total, I saw three myeloma experts and each one had a different treatment plan. I chose the one which I thought was best for me. I wish you well.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Flc ratio
Dear Rex,
There is no specific M spike or light chain level at which you start treatment. If symptoms are starting to emerge (anemia, bone lesions or thinning of the bones, high serum calcium levels or kidney problems), treatment becomes necessary. Your sister is anemic to a modest extent. If the M spike and/or serum free kappa light chain level has been on the rise and the hemoglobin on the decline (and there is no other good explanation for the anemia), I would argue that it is time to think about treatment. Lastly, even if the myeloma can still be considered smoldering, it is considered high-risk based on the information you have provided (high M spike level, substantial marrow burden of disease, abnormal free light chain ratio). There are an increasing number of clinical trials being run for patients whose disease fits this profile to see if early intervention can alter the course of the disease. Data from a small trial out of Spain noted a benefit to the use of lenalidomide (Revlimid) and dexamethasone for patients with high risk smoldering myeloma. I agree with Terry1 about seeing someone who sees a lot of this to better determine the need to start treatment or not.
Let us know if you have any other questions. Good luck!
Pete V.
There is no specific M spike or light chain level at which you start treatment. If symptoms are starting to emerge (anemia, bone lesions or thinning of the bones, high serum calcium levels or kidney problems), treatment becomes necessary. Your sister is anemic to a modest extent. If the M spike and/or serum free kappa light chain level has been on the rise and the hemoglobin on the decline (and there is no other good explanation for the anemia), I would argue that it is time to think about treatment. Lastly, even if the myeloma can still be considered smoldering, it is considered high-risk based on the information you have provided (high M spike level, substantial marrow burden of disease, abnormal free light chain ratio). There are an increasing number of clinical trials being run for patients whose disease fits this profile to see if early intervention can alter the course of the disease. Data from a small trial out of Spain noted a benefit to the use of lenalidomide (Revlimid) and dexamethasone for patients with high risk smoldering myeloma. I agree with Terry1 about seeing someone who sees a lot of this to better determine the need to start treatment or not.
Let us know if you have any other questions. Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Flc ratio
Thank you for all of your input, I will share it with her. She lives in northern Michigan and sees just an oncologist, not hematologist, does that make a difference?
Also, in addition, she has been in the hospital 3 times in the past 2 years with infections. Twice with pneumonia and once with cellulitis. Does that change the picture as well?
Also, in addition, she has been in the hospital 3 times in the past 2 years with infections. Twice with pneumonia and once with cellulitis. Does that change the picture as well?
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Rex
Re: Flc ratio
Dear Rex,
It is always hard to be certain of things in this kind of venue but there are red flags here for possible symptomatic myeloma, with frequent infections being one such possible clue (anemia the other). I would suggest going down to U. Mich. or the Karmanos Cancer Center at Wayne State University (Dr. Zonder) to get another set of eyes to evaluate her circumstances.
Take care!
Pete V.
It is always hard to be certain of things in this kind of venue but there are red flags here for possible symptomatic myeloma, with frequent infections being one such possible clue (anemia the other). I would suggest going down to U. Mich. or the Karmanos Cancer Center at Wayne State University (Dr. Zonder) to get another set of eyes to evaluate her circumstances.
Take care!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Flc ratio
Hi,
I would highly recommend contacting the Univ of Mich! We also live in northern Mich and while it's a long trek back and forth to U of M, with smoldering or full blown multiple myeloma you really want to go with specialists who treat multiple myeloma specifically.
My husband was diagnosed with multiple myeloma in May 2011, and at that time his M protein was 4.9 and it was in apprx 85% of his marrow. Many bone lesions, too. His local hematologist suggested seeing the multiple myeloma specialists at the Univ of Mich, which we did and he was enrolled in the Carfilzomib/Revlimid/Dex trial for newly diagnosed patients. We live north of Gaylord and it takes about 3 1/2 hrs one way and despite the time spent on the road, we are so glad we went to the UM. He is in his 16th cycle now and although he has experienced many of the textbook complications from the multiple myeloma and medicines, he can still work part time and can do most of the things he used to and he's doing much better now. And while UM may seem far away, they have stayed in close contact with the local physicians when my husband has been up here in the local ER unexpectedly. Very good communication between the two hospitals.
The U of M Drs, PAs and RNs and aids have all been great and the Infusion nurses are SUPER special!
I would highly recommend contacting the Univ of Mich! We also live in northern Mich and while it's a long trek back and forth to U of M, with smoldering or full blown multiple myeloma you really want to go with specialists who treat multiple myeloma specifically.
My husband was diagnosed with multiple myeloma in May 2011, and at that time his M protein was 4.9 and it was in apprx 85% of his marrow. Many bone lesions, too. His local hematologist suggested seeing the multiple myeloma specialists at the Univ of Mich, which we did and he was enrolled in the Carfilzomib/Revlimid/Dex trial for newly diagnosed patients. We live north of Gaylord and it takes about 3 1/2 hrs one way and despite the time spent on the road, we are so glad we went to the UM. He is in his 16th cycle now and although he has experienced many of the textbook complications from the multiple myeloma and medicines, he can still work part time and can do most of the things he used to and he's doing much better now. And while UM may seem far away, they have stayed in close contact with the local physicians when my husband has been up here in the local ER unexpectedly. Very good communication between the two hospitals.
The U of M Drs, PAs and RNs and aids have all been great and the Infusion nurses are SUPER special!
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Chris M
9 posts
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