Thanks, Multibilly,
I have appreciated reading your comments on other posts. It's wonderful to have someone, as well studied as you, who is willing to take the time to help us throught our struggles to know more. I thank you for being honest about your lack of knowledge for my type of myeloma.
Take care and the best of wishes for you in your journey.
Lu
Forums
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North-East - Name: Lu
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 10, 2015
- Age at diagnosis: 59
Re: Newly diagnosed with smoldering myeloma
Hi, K_Shash,
It's nice to be introduced to someone who has similar lab results. I will look for your postings so I can read about your experiences. I'm still waiting to hear about my bone biopsy results. It feels like forever. I will find out a week from today. I'm wanting to be optimistic but knowing my other numbers I'm fearing the outcome. My hematologist told me if I have more than 10% protein he will want to start treatment. I'm trying to read everything I can to make informed decisions.
Thank you for taking time to respond to my posting.
Lu
It's nice to be introduced to someone who has similar lab results. I will look for your postings so I can read about your experiences. I'm still waiting to hear about my bone biopsy results. It feels like forever. I will find out a week from today. I'm wanting to be optimistic but knowing my other numbers I'm fearing the outcome. My hematologist told me if I have more than 10% protein he will want to start treatment. I'm trying to read everything I can to make informed decisions.
Thank you for taking time to respond to my posting.
Lu-
North-East - Name: Lu
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 10, 2015
- Age at diagnosis: 59
Re: Newly diagnosed with smoldering myeloma
I got the results from my BMB today and it wasn't good news. I have 20 to 30 percent plasma cells and need to start treatment.
My oncologist / hematologist has referred my to Dr Phil McCarthy at Roswell Cancer Hospital. He specializes in myeloma. I'm thankful for the early diagnosis but feel overwhelmed today. Tomorrow will be a better day.
I'm glad I have this forum for support and information. Thanks to all who participate. Lu
My oncologist / hematologist has referred my to Dr Phil McCarthy at Roswell Cancer Hospital. He specializes in myeloma. I'm thankful for the early diagnosis but feel overwhelmed today. Tomorrow will be a better day.
I'm glad I have this forum for support and information. Thanks to all who participate. Lu
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North-East - Name: Lu
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 10, 2015
- Age at diagnosis: 59
Re: Newly diagnosed with smoldering myeloma
Lu,
You are in extremely good hands with Dr. McCarthy.
BTW, what were your SERUM free light chain values from your earlier lab test results?
You are in extremely good hands with Dr. McCarthy.
BTW, what were your SERUM free light chain values from your earlier lab test results?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed with smoldering myeloma
Hi Lu,
Of course, I speak for myself. I was actually eager to get my treatment started. I am glad my "smoldering myeloma" stage was not discovered, as that would have been just an anxiety period. Also, I wanted to get that protein leak taken care of to avoid any kidney damage.
I am sure you will respond well, too. I assume you will be starting the RVD (Revlimid, Velcade, dexamethasone) induction therapy. Let us know what doses are recommended. I am on only 15 mg Revlimid (3 weeks on, 1 week off), 2.17 mg Velcade weekly shot, and 20 mg dex weekly the same morning.
I weigh only 125 lbs (57 kg). The Velcade dose is based on the body area (?) and my oncologist reduced the standard 40 mg dex before signing off on the chemo pharmacy's dosage. Thank God! You can read some horror stories about people passing out, etc., till their dosage was adjusted. All it takes is a little TLC on the part of the oncologist, and even some 'experts'.
Wish you all the best.
K_Shash
Of course, I speak for myself. I was actually eager to get my treatment started. I am glad my "smoldering myeloma" stage was not discovered, as that would have been just an anxiety period. Also, I wanted to get that protein leak taken care of to avoid any kidney damage.
I am sure you will respond well, too. I assume you will be starting the RVD (Revlimid, Velcade, dexamethasone) induction therapy. Let us know what doses are recommended. I am on only 15 mg Revlimid (3 weeks on, 1 week off), 2.17 mg Velcade weekly shot, and 20 mg dex weekly the same morning.
I weigh only 125 lbs (57 kg). The Velcade dose is based on the body area (?) and my oncologist reduced the standard 40 mg dex before signing off on the chemo pharmacy's dosage. Thank God! You can read some horror stories about people passing out, etc., till their dosage was adjusted. All it takes is a little TLC on the part of the oncologist, and even some 'experts'.
Wish you all the best.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Newly diagnosed with smoldering myeloma
Hello Lu,
I'm sorry that it's necessary for you to start treatment. As you said, though, it is much better that the disease was caught at this point, rather than it going undiagnosed -- or misdiagnosed -- for much longer.
I am sure you will be in good hands with Dr. McCarthy.
Don't hesitate to let us know if and how we can be of more help to you.
I wish you all the best.
I'm sorry that it's necessary for you to start treatment. As you said, though, it is much better that the disease was caught at this point, rather than it going undiagnosed -- or misdiagnosed -- for much longer.
I am sure you will be in good hands with Dr. McCarthy.
Don't hesitate to let us know if and how we can be of more help to you.
I wish you all the best.
Re: Newly diagnosed with smoldering myeloma
Hi Multibilly,
Here are my serum light chain results:
Kappa 80
Lambda 31
Kappa free light chain 1293.7
Lambda free light chain 5.9
Kappa / lambda ratio 219.27
I'm a bit confused by my diagnosis, based on the article by Dr. V. Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders"
Here are my serum light chain results:
Kappa 80
Lambda 31
Kappa free light chain 1293.7
Lambda free light chain 5.9
Kappa / lambda ratio 219.27
I'm a bit confused by my diagnosis, based on the article by Dr. V. Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders"
- 60% or greater clonal plasma cells on bone marrow exam (mine was 20 to 30%)
- Serum involved / uninvolved free light chain ratio of 100 or greater, provided the absolute level of the involved free chain is at least 100 mg/L (my ratio is 219.27, which figure do I look at for the absolute level – the kappa of 80 or my involved Kappa of 1293?
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North-East - Name: Lu
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 10, 2015
- Age at diagnosis: 59
Re: Newly diagnosed with smoldering myeloma
Hi K_Sash,
I have been quoted the same treatment regimen as you are receiving. I don't know the dosage yet. My appointment with Dr. McCarthy is the 9th of March. That's the earliest appointment I could get. I will give you dosage information when I get it. I'm curious, are you given the medications from the clinic or can they actually be filled by a pharmacist?
I agree with you about starting treatment early. I was very concerned about the number of Bence Jones proteins I was spilling in my 24 hour urine. So far, I had no kidney damage. Yay for that!
Thanks for your concern and comments! Lu
I have been quoted the same treatment regimen as you are receiving. I don't know the dosage yet. My appointment with Dr. McCarthy is the 9th of March. That's the earliest appointment I could get. I will give you dosage information when I get it. I'm curious, are you given the medications from the clinic or can they actually be filled by a pharmacist?
I agree with you about starting treatment early. I was very concerned about the number of Bence Jones proteins I was spilling in my 24 hour urine. So far, I had no kidney damage. Yay for that!
Thanks for your concern and comments! Lu
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North-East - Name: Lu
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 10, 2015
- Age at diagnosis: 59
Re: Newly diagnosed with smoldering myeloma
Hi Lu,
Your response doesn't quite make sense to me. You are providing two pairs of numbers for your SERUM free light chain values, when there there should only be one pair of numbers. To help clear this up, please provide:
North-East wrote:
Your response doesn't quite make sense to me. You are providing two pairs of numbers for your SERUM free light chain values, when there there should only be one pair of numbers. To help clear this up, please provide:
- The complete description for each of these four numbers below from your lab reports, including the units of measure (mg/dL, etc).
- The exact name of the test where you found each of these four numbers.
North-East wrote:
Here are my serum light chain results:
Kappa 80
Lambda 31
Kappa free light chain 1293.7
Lambda free light chain 5.9
Kappa / lambda ratio 219.27
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed with smoldering myeloma
Multibilly,
Kappa / lambda light chain, total, serum
Kappa. 80 mg/dl
Lambda 31 mg/dl
Kappa / lambda ratio 2.6
This asset provides a measurement of the total kappa and the lambda light chains, ie., the amount of free (unattached) light chain in circulation and the amount of light chain linked to heavy chain in intact immunoglobulin molecules. Assays for serum free light chain only, kappa and lambda with ratio, may be more useful in evaluating and managing light chain gammopathies including those associated with myeloma, lymphoproliferative disorders, and amyloidosis.
Kappa / lambda light chains, free, with ratio, serum
Kappa light chain, free 1293.7 mg/L
Lambda light chain, free 5.9 mg/L
Kappa / lambda, free ratio 219.27
Hope this helps. I'm sure confused between the difference of the two.
Lu
Kappa / lambda light chain, total, serum
Kappa. 80 mg/dl
Lambda 31 mg/dl
Kappa / lambda ratio 2.6
This asset provides a measurement of the total kappa and the lambda light chains, ie., the amount of free (unattached) light chain in circulation and the amount of light chain linked to heavy chain in intact immunoglobulin molecules. Assays for serum free light chain only, kappa and lambda with ratio, may be more useful in evaluating and managing light chain gammopathies including those associated with myeloma, lymphoproliferative disorders, and amyloidosis.
Kappa / lambda light chains, free, with ratio, serum
Kappa light chain, free 1293.7 mg/L
Lambda light chain, free 5.9 mg/L
Kappa / lambda, free ratio 219.27
Hope this helps. I'm sure confused between the difference of the two.
Lu
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North-East - Name: Lu
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 10, 2015
- Age at diagnosis: 59
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