Thank you, Dr. Jonathan.
Fortunately now, my father's got discharged from hospital and his fever has gone. But swellings on both his legs have increased (from feet and ankles, it has spread to knees and above), and he has a weight gain of 5-6 kg (11-13 lbs). We do not know the reason for this, whether this is due to myeloma or due to the heart issue or some fluid accumulation.
We consulted a cardiologist who prescribed Lasilactone (spironolactone [Aldactone]+ furosemide [Lasix]) capsules (1/2 in morning and 1/2 in evening), but no improvement for past 4-5 days. Are such swellings common symptom in myeloma patients?
Regards,
Pankaj.
Forums
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PankajSri - Name: PankajSri
- Who do you know with myeloma?: My father
- When were you/they diagnosed?: My father's been diagnosed 2 months back
- Age at diagnosis: 81
Re: M-spike not dropping after 2 months of therapy
There has been a break in my father's anti-myeloma therapy for one month due to hospitalization because of fever, cellulitis, etc.
The latest CBC report showed interesting results: though Hb levels have slumped to 8.4, for the first time, WBC has entered normal range (4400) with platelet at 2,02,000.
We are unable to understand how, despite stoppage of therapy (dex + bortezomib [Velcade] + thalidomide), the WBC & platelet count has reached normal levels.
My only query is: Does the therapy (dex + bortezomib + thalidomide) take time to bring back blood counts to normal, as the blood counts were quite low when the therapy was going on?
Thank you,
Pankaj.
The latest CBC report showed interesting results: though Hb levels have slumped to 8.4, for the first time, WBC has entered normal range (4400) with platelet at 2,02,000.
We are unable to understand how, despite stoppage of therapy (dex + bortezomib [Velcade] + thalidomide), the WBC & platelet count has reached normal levels.
My only query is: Does the therapy (dex + bortezomib + thalidomide) take time to bring back blood counts to normal, as the blood counts were quite low when the therapy was going on?
Thank you,
Pankaj.
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PankajSri - Name: PankajSri
- Who do you know with myeloma?: My father
- When were you/they diagnosed?: My father's been diagnosed 2 months back
- Age at diagnosis: 81
Re: M-spike not dropping after 2 months of therapy
I have followed this thread and note that other experts have given excellent advise. I just wanted to chime in and say that I would be very suspicious about the diagnosis here. IgM myeloma, as stated earlier, is VERY rare. To have IgM myeloma without bone lesions is a rare form of an already rare illness.
In my opinion, the initial bone marrow biopsy needs to be confirmed. The difference between myeloma and Waldenstrom's macroglobulinemia (WM) here is huge. The cardiac issue is also important. You need to make sure, for example, that it is not related to amyloidosis. Some patients retain a lot of fluid with the steroids.
He does not seem to have clearly responded to Velcade-based therapy. The drop in the light chains is important when the kappa/lambda ratio is declining. Normalizing the lambda free light chain is irrelevant if the disease is kappa.
Having the patient seen by a plasma cell disease specialist is critically important here. I myself would not do any treatments without absolute confirmation of the disease diagnosis.
Hope this helps, and that your father gets better ASAP.
In my opinion, the initial bone marrow biopsy needs to be confirmed. The difference between myeloma and Waldenstrom's macroglobulinemia (WM) here is huge. The cardiac issue is also important. You need to make sure, for example, that it is not related to amyloidosis. Some patients retain a lot of fluid with the steroids.
He does not seem to have clearly responded to Velcade-based therapy. The drop in the light chains is important when the kappa/lambda ratio is declining. Normalizing the lambda free light chain is irrelevant if the disease is kappa.
Having the patient seen by a plasma cell disease specialist is critically important here. I myself would not do any treatments without absolute confirmation of the disease diagnosis.
Hope this helps, and that your father gets better ASAP.
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Dr. James Hoffman - Name: James E. Hoffman, M.D.
Beacon Medical Advisor
Re: M-spike not dropping after 2 months of therapy
Thank you very much for your reply, Dr. James.
Just yesterday, we received the all-important treatment blood test results as follows:
1. B2 Microglobulin: 2.1 ng/ml (4.8 at start of therapy)
2. Serum Kappa light chains: 16.20 mg/L (69.9 at start of therapy)
We also received the results of protein electrophoresis and it has declared "M" band as "Not seen". This report has come after my father completed 16 doses of Velcade + dex + 20 days of thalidomide (100 mg).
However, serum albumin values are extremely low and have slumped to 1.93 from 3.39 within two and a half months. A new problem has now emerged: both his legs are swollen as reported earlier but now his left leg has started leaking a fluid. He is now tied his leg in a bandage soaked with magnesium sulphate solution. He also underwent a Doppler test today that declares "no DVT" but "perforator veins" as incompetent.
Liver function test done in July also indicates low value of albumin (not very low) and his Creatinine results is normal at 0.7. Protein electrophoresis done during July on urine also does not indicate presence of Bence-Jones proteins and no "M" band.
Is this leaking leg a side-effect of the therapy that has just been concluded only last week (Velcade + dex + thalidomide)? How can it be treated?
As per protein electrophoresis report, he has now been diagnosed as "polyclonal gammopathy with hypoalbuminemia". Please note that he has been on a protein-rich diet for past few months ever since therapy began.
Secondly, he has also been diagnosed to have ischemic heart disease as per echo cardiogram with dilated RA, RV but no clots.
Thanks once again,
Pankaj.
Just yesterday, we received the all-important treatment blood test results as follows:
1. B2 Microglobulin: 2.1 ng/ml (4.8 at start of therapy)
2. Serum Kappa light chains: 16.20 mg/L (69.9 at start of therapy)
We also received the results of protein electrophoresis and it has declared "M" band as "Not seen". This report has come after my father completed 16 doses of Velcade + dex + 20 days of thalidomide (100 mg).
However, serum albumin values are extremely low and have slumped to 1.93 from 3.39 within two and a half months. A new problem has now emerged: both his legs are swollen as reported earlier but now his left leg has started leaking a fluid. He is now tied his leg in a bandage soaked with magnesium sulphate solution. He also underwent a Doppler test today that declares "no DVT" but "perforator veins" as incompetent.
Liver function test done in July also indicates low value of albumin (not very low) and his Creatinine results is normal at 0.7. Protein electrophoresis done during July on urine also does not indicate presence of Bence-Jones proteins and no "M" band.
Is this leaking leg a side-effect of the therapy that has just been concluded only last week (Velcade + dex + thalidomide)? How can it be treated?
As per protein electrophoresis report, he has now been diagnosed as "polyclonal gammopathy with hypoalbuminemia". Please note that he has been on a protein-rich diet for past few months ever since therapy began.
Secondly, he has also been diagnosed to have ischemic heart disease as per echo cardiogram with dilated RA, RV but no clots.
Thanks once again,
Pankaj.
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PankajSri - Name: PankajSri
- Who do you know with myeloma?: My father
- When were you/they diagnosed?: My father's been diagnosed 2 months back
- Age at diagnosis: 81
Re: M-spike not dropping after 2 months of therapy
Pankaj-
Your father's case is indeed very complicated sounding. I won't comment on his treatment and whether he does, or does not, actually have myeloma. But, the leaking in his legs is likely to be lymphatic fluid that has backed up in his legs, i.e. the swelling that has progressed. Before good treatment for the swelling can begin, the cause of the back up of fluid needs to be diagnosed and addressed. Lymphedema, the swelling in his legs, usually begins below where the cause of the back up is located, and slowly extends lower when it is a problem of the lymph system. This usually is from a tumor blocking the lymph flow, scar tissue blocking lymph flow, removal of lymph nodes along the path of normal lymph flow, etc.
So, in your father's case, you would expect the swelling to have begun higher in his legs and then gradually worked down towards his feet. When swelling begins in the feet and then works it way up the leg, it usually is the result of some problem in the circulatory system. This kind of problem can be from insufficient blood flow, heart problems, kidney failure, etc.
There is very effective treatment of lymphedema when it is a lymphatic system problem. In the US and many European countries, this treatment includes lymphatic massage, compression bandaging and then prescription of compression garments and exercise. This treatment is provided by a professional who is trained in lymphedema treatment, and is taught to the patient and/or family so they can continue the treatment at home.
Lymphedema can be managed, but is not cured. Swelling that is due to a problem in the circulatory system should have the cause diagnosed before any treatment like that for lymphedema. If the cause isn't found, the excess fluid could be sent back into a system that can't handle it and cause many more problems.
It doesn't sound like the doctors are looking for the cause of the swelling other than to prescribe diuretics. From what you are describing, it doesn't sound like the diuretics are helping in decreasing the fluid retention. So, I suggest that you push for them to look more closely at things that could be causing the fluid back up. Dr. Hoffman's suggestion of amyloidosis being a possibility should be considered.
All the best for your continued efforts to find the correct diagnosis(es) and treatment for your father,
Nancy in Phila
Your father's case is indeed very complicated sounding. I won't comment on his treatment and whether he does, or does not, actually have myeloma. But, the leaking in his legs is likely to be lymphatic fluid that has backed up in his legs, i.e. the swelling that has progressed. Before good treatment for the swelling can begin, the cause of the back up of fluid needs to be diagnosed and addressed. Lymphedema, the swelling in his legs, usually begins below where the cause of the back up is located, and slowly extends lower when it is a problem of the lymph system. This usually is from a tumor blocking the lymph flow, scar tissue blocking lymph flow, removal of lymph nodes along the path of normal lymph flow, etc.
So, in your father's case, you would expect the swelling to have begun higher in his legs and then gradually worked down towards his feet. When swelling begins in the feet and then works it way up the leg, it usually is the result of some problem in the circulatory system. This kind of problem can be from insufficient blood flow, heart problems, kidney failure, etc.
There is very effective treatment of lymphedema when it is a lymphatic system problem. In the US and many European countries, this treatment includes lymphatic massage, compression bandaging and then prescription of compression garments and exercise. This treatment is provided by a professional who is trained in lymphedema treatment, and is taught to the patient and/or family so they can continue the treatment at home.
Lymphedema can be managed, but is not cured. Swelling that is due to a problem in the circulatory system should have the cause diagnosed before any treatment like that for lymphedema. If the cause isn't found, the excess fluid could be sent back into a system that can't handle it and cause many more problems.
It doesn't sound like the doctors are looking for the cause of the swelling other than to prescribe diuretics. From what you are describing, it doesn't sound like the diuretics are helping in decreasing the fluid retention. So, I suggest that you push for them to look more closely at things that could be causing the fluid back up. Dr. Hoffman's suggestion of amyloidosis being a possibility should be considered.
All the best for your continued efforts to find the correct diagnosis(es) and treatment for your father,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
15 posts
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