First, let me say "thank-you" to the people at this forum. I wrote in late August about my sister being diagnosed with multiple myeloma and someone suggested seeing a multiple myeloma specialist. We found one at Mayo Clinic and she was re-diagnosed with smoldering multiple myeloma. She was on the UNOS list, awaiting a heart transplant, at the time and is now off the list because of this.
A little background. She has 35% white plasma, 95% light chains (increased 15% in 1 month), and is anemic (7.4). No renal problems and no bone lesions. She desperately needs a knee replacement and we are currently working toward that end. The sticking point on that is her heart condition. Doctors are afraid to operate because of it.
In the meantime, the Mayo doctor wants her to start on Revlimid. She keeps saying that she sees no need to rush it because she "doesn't have symptoms". I can't seem to make her understand that she DOES have symptoms -- they just aren't making her feel unwell. And, I am trying to help her understand that this treatment should be started to slow the development of more active symptoms.
I guess my question is: Has anyone else delayed treatment, or considered delaying treatment, because they were not symptomatic? If so, what changed your mind? Or does anyone have suggestions as to what we can say to her?
Also, we were told that the Revlimid was expensive. She hasn't even checked with her insurance company to see if it is covered. How expensive is it?
The doctor gave us the impression that it could be problematic and mentioned getting financial assistance with it. Any comments on that?
Sorry to be so long-winded. Just tag me a concerned sister.
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Re: Is delaying treatment for smoldering myeloma common?
Moko,
Welcome to the forum!
Your sister is quite anemic if she has an HGB level of 7.4 g/dL. If it has been determined that the anemia is due to multiple myeloma, then she would be classified as having symptomatic multiple myeloma, NOT smoldering multiple myeloma.
I can therefore really understand why the Mayo wants to start treatment. I would not suggest delaying treatment until she starts to feel symptoms.
Regarding the cost of Revlimid, I suggest that your sister first checks with her insurance company. Revlimid is a pretty common drug that insurance covers for the treatment of symptomatic multiple myeloma patients (it can be an issue for getting coverage for smoldering multiple myeloma patients, but your sister is not smoldering). And, yes there is financial assistance available to her through either Celgene (the maker of a Revlimid) or the Chronic Disease Fund if her insurance won't adequately cover the cost (and she qualifies financially).
BTW, I'm not sure what you mean by "95% light chains". Light chains and their ratio are measured in absolute values, not percentages. Did you mean to say that her Kappa/Lambda ratio is 95? It would be useful if you included her kappa & lambda free light chain values, and her M-spike (aka paraprotein or monoclonal protein level). Please always include the units of measure (g/dL, etc)
I assume that the "35% white plasma" number is the plasma cell percentage from her bone marrow biopsy, right?
Hope this helps.
Welcome to the forum!
Your sister is quite anemic if she has an HGB level of 7.4 g/dL. If it has been determined that the anemia is due to multiple myeloma, then she would be classified as having symptomatic multiple myeloma, NOT smoldering multiple myeloma.
I can therefore really understand why the Mayo wants to start treatment. I would not suggest delaying treatment until she starts to feel symptoms.
Regarding the cost of Revlimid, I suggest that your sister first checks with her insurance company. Revlimid is a pretty common drug that insurance covers for the treatment of symptomatic multiple myeloma patients (it can be an issue for getting coverage for smoldering multiple myeloma patients, but your sister is not smoldering). And, yes there is financial assistance available to her through either Celgene (the maker of a Revlimid) or the Chronic Disease Fund if her insurance won't adequately cover the cost (and she qualifies financially).
BTW, I'm not sure what you mean by "95% light chains". Light chains and their ratio are measured in absolute values, not percentages. Did you mean to say that her Kappa/Lambda ratio is 95? It would be useful if you included her kappa & lambda free light chain values, and her M-spike (aka paraprotein or monoclonal protein level). Please always include the units of measure (g/dL, etc)
I assume that the "35% white plasma" number is the plasma cell percentage from her bone marrow biopsy, right?
Hope this helps.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is delaying treatment for smoldering myeloma common?
Well, as the doctor explained it, they are currently classifying her as smoldering because she only has anemia right now. No kidney problems, no bone lesions, and no elevated calcium.
As for the light chains, he called them lambda light chains and said she had gone from 80 to 95.5, in whatever they measure it in. And yes, the 35% was from the biopsy.
I am still learning all the terms and stuff, so I apologize for the errors.
Thank you for the information on the Revlimid. I will pass the information on to her.
As for the light chains, he called them lambda light chains and said she had gone from 80 to 95.5, in whatever they measure it in. And yes, the 35% was from the biopsy.
I am still learning all the terms and stuff, so I apologize for the errors.
Thank you for the information on the Revlimid. I will pass the information on to her.
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Moko
Re: Is delaying treatment for smoldering myeloma common?
Moko,
I agree with Multibilly that it would be surprising if your sister was diagnosed with smoldering myeloma given her anemia. It seems more likely that she was diagnosed with multiple myeloma (symptomatic myeloma), and the doctors said that right now her "only" symptom is anemia.
However, if the anemia is viewed by the doctors as being the result of having myeloma, then that really should be sufficient for a diagnosis of multiple myeloma.
The criteria for diagnosing multiple myeloma, smoldering myeloma, and MGUS are described rather well in the Wikipedia article on myeloma, in the section on diagnostic criteria.
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
As you'll see in the Wikipedia article, the criteria for a smoldering myeloma diagnosis are:
1. Serum paraprotein >30 g/L AND/OR
2. Clonal plasma cells >10% on bone marrow biopsy AND
3. NO myeloma-related organ or tissue impairment [i.e., no CRAB symptoms]
The criteria for a diagnosis of multiple myeloma are:
1. Clonal plasma cells >10% on bone marrow biopsy or (in any quantity) in a biopsy from other tissues (plasmacytoma)
2. A monoclonal protein (paraprotein) in either serum or urine (except in cases of true non-secretory myeloma)
3. Evidence of end-organ damage felt related to the plasma cell disorder (related organ or tissue impairment, ROTI, commonly referred to by the acronym "CRAB"):
- HyperCalcemia (corrected calcium >2.75 mmol/L)
- Renal insufficiency attributable to myeloma
- Anemia (hemoglobin <10 g/dL)
- Bone lesions (lytic lesions or osteoporosis with compression fractures)
Your sister has a plasma cell percentage higher than 10%. I'm assuming she also has a monoclonal protein (M-spike). And she has the "A" (anemia) criterion from the CRAB criteria.
So, unless the anemia is due to something other than myeloma, she really does meet the definition of having multiple myeloma. So perhaps your sister has misunderstood what the diagnosis really was?
Also, the value you gave for your sister's lambda free light chain level (initially 80, now 95) is above the normal range. The normal range is 5.7 - 26.3 mg/L, or 0.57 - 2.63 mg/dL. The fact that she has an elevated lambda free light chain level indicates that she probably has an M-spike (monoclonal protein).
All of this means that the recommendation your sister received from the doctors at Mayo makes sense. She most likely has multiple myeloma, not smoldering myeloma, and you generally don't wait to treat multiple myeloma.
I hope this is helpful. Please have your sister confirm for certain what her diagnosis is. Like you said, she really needs to understand that she actually is syptomatic -- the myeloma is causing damage to her body -- and that isn't changed by the fact that she may not sense it.
I agree with Multibilly that it would be surprising if your sister was diagnosed with smoldering myeloma given her anemia. It seems more likely that she was diagnosed with multiple myeloma (symptomatic myeloma), and the doctors said that right now her "only" symptom is anemia.
However, if the anemia is viewed by the doctors as being the result of having myeloma, then that really should be sufficient for a diagnosis of multiple myeloma.
The criteria for diagnosing multiple myeloma, smoldering myeloma, and MGUS are described rather well in the Wikipedia article on myeloma, in the section on diagnostic criteria.
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
As you'll see in the Wikipedia article, the criteria for a smoldering myeloma diagnosis are:
1. Serum paraprotein >30 g/L AND/OR
2. Clonal plasma cells >10% on bone marrow biopsy AND
3. NO myeloma-related organ or tissue impairment [i.e., no CRAB symptoms]
The criteria for a diagnosis of multiple myeloma are:
1. Clonal plasma cells >10% on bone marrow biopsy or (in any quantity) in a biopsy from other tissues (plasmacytoma)
2. A monoclonal protein (paraprotein) in either serum or urine (except in cases of true non-secretory myeloma)
3. Evidence of end-organ damage felt related to the plasma cell disorder (related organ or tissue impairment, ROTI, commonly referred to by the acronym "CRAB"):
- HyperCalcemia (corrected calcium >2.75 mmol/L)
- Renal insufficiency attributable to myeloma
- Anemia (hemoglobin <10 g/dL)
- Bone lesions (lytic lesions or osteoporosis with compression fractures)
Your sister has a plasma cell percentage higher than 10%. I'm assuming she also has a monoclonal protein (M-spike). And she has the "A" (anemia) criterion from the CRAB criteria.
So, unless the anemia is due to something other than myeloma, she really does meet the definition of having multiple myeloma. So perhaps your sister has misunderstood what the diagnosis really was?
Also, the value you gave for your sister's lambda free light chain level (initially 80, now 95) is above the normal range. The normal range is 5.7 - 26.3 mg/L, or 0.57 - 2.63 mg/dL. The fact that she has an elevated lambda free light chain level indicates that she probably has an M-spike (monoclonal protein).
All of this means that the recommendation your sister received from the doctors at Mayo makes sense. She most likely has multiple myeloma, not smoldering myeloma, and you generally don't wait to treat multiple myeloma.
I hope this is helpful. Please have your sister confirm for certain what her diagnosis is. Like you said, she really needs to understand that she actually is syptomatic -- the myeloma is causing damage to her body -- and that isn't changed by the fact that she may not sense it.
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JimNY
Re: Is delaying treatment for smoldering myeloma common?
Well, we are currently at Mayo to see about her knee replacement, so I have her papers in front of me. Her papers show m-spike, in the urine, of 637. And yes, her lambda light chains are 95.5 mg/dl. We will ask the doctor tomorrow about smoldering vs. active (symptomatic).
Thanks for all the guidance!
Thanks for all the guidance!
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Moko
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