My husband was diagnosed with multiple myeloma in January. His kappa light chain number was 127,000; normal lambda with a ratio of over 1000. He has had 4 cycles of Velcade and dex. He has kidney damage, so no stem cell transplant. He is 65.
His ratio is down to 763. His main problem is pain in his shoulders at night, so he is on a lot of pain meds. We see a pain specialist today for a pain block in his shoulders. He has been in torment since the beginning. I feel sorry for everyone I read about with this painful disease. We have been to one support group in Montgomery, Alabama. No one I've read about or met has had my husband's symptoms.
I don't know how much more my husband can take if this pain block does not help. We have been married 44 years. I just hope his torment will be over soon. I would welcome any comments and especially your prayers.
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Cora Lee - Name: CoraLee
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 65
Re: Multiple myeloma with high kappa free light chains
Cora Lee,
I'm sorry to hear that your husband is in so much pain. This is indeed a wicked disease, but there is often great hope with the right treatment.
This is indeed a high FLC ratio. Do you know what his M-spike (aka paraprotein, abnormal protein band, M-protein) level is? Did he have a bone marrow biopsy and do you known if he has any adverse genetic mutations (cytogentics) that have been flagged by his treating doctor?
While I don't know all the details of your husband's case and I'm not a doc, I am a little surprised that he is only a doublet drug regimen (Velcade + dex). Have you discussed adding an additional drug such as cylophosphamide (cyclophospamide + Velcade + dex = CyBorD), or a reduced dose of Revlimid (the Revlimid dose would be reduced due to his renal issues). or some other drug combo?
Is the doctor you are working with a hematologist that focuses exclusively on multiple myeloma? In any case, you might want to consider going to a facility to get a second opinion on the best course of treatment under these circumstances. Folks on this forum can offer up some recommendations on where to find myeloma specialists that might be worth a road trip for you and your husband.
I'm sorry to hear that your husband is in so much pain. This is indeed a wicked disease, but there is often great hope with the right treatment.
This is indeed a high FLC ratio. Do you know what his M-spike (aka paraprotein, abnormal protein band, M-protein) level is? Did he have a bone marrow biopsy and do you known if he has any adverse genetic mutations (cytogentics) that have been flagged by his treating doctor?
While I don't know all the details of your husband's case and I'm not a doc, I am a little surprised that he is only a doublet drug regimen (Velcade + dex). Have you discussed adding an additional drug such as cylophosphamide (cyclophospamide + Velcade + dex = CyBorD), or a reduced dose of Revlimid (the Revlimid dose would be reduced due to his renal issues). or some other drug combo?
Is the doctor you are working with a hematologist that focuses exclusively on multiple myeloma? In any case, you might want to consider going to a facility to get a second opinion on the best course of treatment under these circumstances. Folks on this forum can offer up some recommendations on where to find myeloma specialists that might be worth a road trip for you and your husband.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma with high kappa free light chains
Thank you for responding. I had never heard of this disease until my husband was diagnosed. So there is a lot I need to learn. His oncologist is a hematologist also. He is always so positive about his labs, but I know my husband is very sick. Another issue is 2 artificial heart valves he has had for 17 years, so he is on Coumadin (warfarin). Every procedure that involves blood is a battle.
His doctor is consulting with University of Alabama - Birmingham (UAB). We had hopes of going there last month, but for some reason they cancelled the evaluation. From what I understand, there is little treatment with my husband's heart and kidney problems. He has lost about 30 lbs and has no appetite. He gets exhausted doing small tasks.
I don't know what I'm expecting from any comments ... Just a listening ear, I guess.
His doctor is consulting with University of Alabama - Birmingham (UAB). We had hopes of going there last month, but for some reason they cancelled the evaluation. From what I understand, there is little treatment with my husband's heart and kidney problems. He has lost about 30 lbs and has no appetite. He gets exhausted doing small tasks.
I don't know what I'm expecting from any comments ... Just a listening ear, I guess.
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Cora Lee - Name: CoraLee
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 65
Re: Multiple myeloma with high kappa free light chains
Hi Cora Lee,
Just so others might better help you, do you know a couple of your husband's key stats, such as his creatinine level and his heart's ejection fraction?
Just so others might better help you, do you know a couple of your husband's key stats, such as his creatinine level and his heart's ejection fraction?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma with high kappa free light chains
Hi Cora Lee!
I agree with Multibilly; the two of you should get a second opinion from a myeloma expert, someone who focuses on treating only myeloma patients. There's so much going on with new drugs and treatment protocols that an expert would be my first choice to get all options available for treatment specific to your husband's situation.
My husband was in renal failure on diagnosis (December 2014) and was put on a reduced dose of CyBorD until his renal function returned to normal. His kappa light chain was 16000 and is now back in the normal range. We are in the process of completing induction therapy to move to the next step.
I understand how helpless you feel watching someone you love suffer in pain; you will be in my prayers! And keep reading here; I've found this site very helpful!
I agree with Multibilly; the two of you should get a second opinion from a myeloma expert, someone who focuses on treating only myeloma patients. There's so much going on with new drugs and treatment protocols that an expert would be my first choice to get all options available for treatment specific to your husband's situation.
My husband was in renal failure on diagnosis (December 2014) and was put on a reduced dose of CyBorD until his renal function returned to normal. His kappa light chain was 16000 and is now back in the normal range. We are in the process of completing induction therapy to move to the next step.
I understand how helpless you feel watching someone you love suffer in pain; you will be in my prayers! And keep reading here; I've found this site very helpful!
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ByYourSide - Name: Susan
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: December 2014
- Age at diagnosis: 65
Re: Multiple myeloma with high kappa free light chains
Cora Lee,
Have they done a bone scan and MRI, x ray, etc. Shoulder pain is how they found my husband's myeloma. They found a tumor attached to his shoulder. So his treatment started with radiation to get rid of the tumor.
Even with the best doctors, you have to question, suggest, and sometimes demand they check certain things.
Have they done a bone scan and MRI, x ray, etc. Shoulder pain is how they found my husband's myeloma. They found a tumor attached to his shoulder. So his treatment started with radiation to get rid of the tumor.
Even with the best doctors, you have to question, suggest, and sometimes demand they check certain things.
Re: Multiple myeloma with high kappa free light chains
Hello Cora Lee,
Because you have considered having your husband seen at the University of Alabama - Birmingham (UAB), we reached out to Dr. Luciano Costa, a myeloma specialist at UAB, about your husband's case.
Dr. Costa has provided the following feedback, which we hope you and your husband will find helpful:
Because you have considered having your husband seen at the University of Alabama - Birmingham (UAB), we reached out to Dr. Luciano Costa, a myeloma specialist at UAB, about your husband's case.
Dr. Costa has provided the following feedback, which we hope you and your husband will find helpful:
I agree that bortezomib [Velcade] and dexamethasone is the cornerstone of upfront treatment for patients who present with renal [kidney] dysfunction, so that was a good choice. However, I also strongly believe that the benefit of a 3-drug regimen can be safely extended to patients who present with renal dysfunction.
In this setting we almost always add cyclophosphamide to the regimen (as mentioned by others). At the lower doses utilized in multiple myeloma, cyclophosphamide does not require adjustment for renal dysfunction. Another important point is that, even though bortezomib is often used on a weekly schedule, I invariably follow a “classic”, twice-a-week schedule for patients who present with renal dysfunction. In this population, speed of response may translate into higher likelihood of preserving renal function, so the schedule of bortezomib may make a difference. We published our experience with this regimen in renal dysfunction a few years back in this paper:
LJ Costa et al, "Outcomes of patients with multiple myeloma and renal impairment treated with bortezomib, cyclophosphamide, and dexamethasone without plasma exchange," European Journal of Haematology, Sep 2012 (letter to editor [subscription or payment required])
I also would add that patients with renal impairment can safely undergo autologous transplantation if the treatment is otherwise appropriate. Renal failure by itself does not disqualify someone for the treatment. Physicians guiding the treatment will adjust the doses of conditioning chemotherapy for transplant so the patient does not have excessive exposure to the chemotherapy agent because of the kidney failure.”
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