Greetings
I'm hoping someone can help me figure out Refractory Myeloma issues. My family member is a 53 yr old female; and was told she had multiple myeloma in May 09. Since then she's undergone several therapies and told she wasn't ready for stem cell transplant.
Yesterday we went to the doctor, after finishing an inpatient round of VDT PACE Chemo, she was now at refractory myeloma, We were baffled that then she was going to be set up for transplant to hope for remission. If they couldn't do it before why now? It makes no sense the labs were better previously.
I hope it's okay to post the numbers here for the past two months maybe someone will know if there is HOPE! We are unable financially to go for more opinions and consultations, any advice would be grateful or suggestions perhaps.
707* (ProtUR) 36.70* (Kappa LC) 174.76* (K/L Ratio)
2138* (IgG) these are the results for April
2436* (ProtUR) 120.00* (Kappa LC) 206.90* (K/L Ratio)
QUANTITATIVE BLOOD: 1800* (IgG) These are for March
Are we missing something??? The indicator for her has always been the protein, it dropped.
With thanks in advance.
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Rain - Name: Rain
- Who do you know with myeloma?: Signiicant Other
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 53
Re: Refractory Myeloma
Great question, and terrible situation. Most doctors that are not at large myeloma centers use the words smoldering and refractory rather losely, so it may or may not mean what the "textbook" definition is.
There really are three myeloma response states that are recognized and relevant to her -- relapsed myeloma, primary refractory, and relapsed and refractory. Relapsed myeloma responded at some point and, after a period of being off-therapy or on maintenance therapy, now requires further therapy because of rising monoclonal protein or worsening end-organ damage (fractures, worsened anemia, or worsening kidney function). Primary refractory is defined as disease that never achieved even a minor response to any therapy and now is not responding to salvage therapy or progressing within 60 days of last therapy. Finally relapsed and refractory means a patient that had a response initialy but now is not responding to salvage therapy or is progressing within 60 days.
Many doctors will only move patient on to autologous transplant who are responding to their current therapy, otherwise they believe they are not a 'candidate'. That said, other doctors, like me, think high dose IV melphalan used in the setting of autologous transplant is simply another effective therapy, taking its place with the other recognized active single agents in myeloma (IMiDs, bortezomib, and steroids). That said, the fact that she received VDT-PACE and her IgG went up form 1800-->2100 is definitely NOT a good sign and she certainly is high risk of getting relatively little benefit from autologous transplant.
Finally her case reveals the confusing situation when the serum kappa light chains and kappa/lambda ratio IMPROVES with treatment but the overall IgG WORSENS. This is not as uncommon as we physicians would like and it is best to use the more reliable IgG in those cases. To be a stickler, we should follow the serum monoclonal protein, i.e. her circulating IgG-kappa or IgG-lambda concentration, instead of the overall IgG, but you did not have that data.
Overall my guess is that your physician has tried other therapies, most recently VDT-PACE, and s/he likely feels there is nothing left and is moving her on to autologous transplant as s/he feels that this is the best option for now. All that said, the game is not over till it's over -- having predicted with certainty the demise of an occasional patient within weeks, only to see them alive and well percolating around two years later should cause us all to realize that prediction of the future is best left to others.
best of luck
Craig
There really are three myeloma response states that are recognized and relevant to her -- relapsed myeloma, primary refractory, and relapsed and refractory. Relapsed myeloma responded at some point and, after a period of being off-therapy or on maintenance therapy, now requires further therapy because of rising monoclonal protein or worsening end-organ damage (fractures, worsened anemia, or worsening kidney function). Primary refractory is defined as disease that never achieved even a minor response to any therapy and now is not responding to salvage therapy or progressing within 60 days of last therapy. Finally relapsed and refractory means a patient that had a response initialy but now is not responding to salvage therapy or is progressing within 60 days.
Many doctors will only move patient on to autologous transplant who are responding to their current therapy, otherwise they believe they are not a 'candidate'. That said, other doctors, like me, think high dose IV melphalan used in the setting of autologous transplant is simply another effective therapy, taking its place with the other recognized active single agents in myeloma (IMiDs, bortezomib, and steroids). That said, the fact that she received VDT-PACE and her IgG went up form 1800-->2100 is definitely NOT a good sign and she certainly is high risk of getting relatively little benefit from autologous transplant.
Finally her case reveals the confusing situation when the serum kappa light chains and kappa/lambda ratio IMPROVES with treatment but the overall IgG WORSENS. This is not as uncommon as we physicians would like and it is best to use the more reliable IgG in those cases. To be a stickler, we should follow the serum monoclonal protein, i.e. her circulating IgG-kappa or IgG-lambda concentration, instead of the overall IgG, but you did not have that data.
Overall my guess is that your physician has tried other therapies, most recently VDT-PACE, and s/he likely feels there is nothing left and is moving her on to autologous transplant as s/he feels that this is the best option for now. All that said, the game is not over till it's over -- having predicted with certainty the demise of an occasional patient within weeks, only to see them alive and well percolating around two years later should cause us all to realize that prediction of the future is best left to others.
best of luck
Craig
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Dr. Craig Hofmeister - Name: Craig C. Hofmeister, M.D.
Re: Refractory Myeloma
Thanks very much to Dr. Hofmeister for answering Rain's question.
Dr. Hofmeister and his colleagues at Ohio State University's Multiple Myeloma Clinic will be answering medical questions posted to the forum during the week of May 17 though 21.
Dr. Hofmeister and his colleagues at Ohio State University's Multiple Myeloma Clinic will be answering medical questions posted to the forum during the week of May 17 though 21.
Re: Refractory Myeloma
Dr. Hofmeister,
There are not enough words of gratitude for your response to my question. We see the doctor tomorrow and will inquiry about the Circulating IgG concetration tests. After reviewing the labs, they've yet to be done. With that being said their plan is to move forward with the autologus transplant after the usual pre eval testing. With the information you provided we feel that there are many questions we still need answered from the team here.
We would love to forward the case labs to you, for an opinion if that would be possible. We've been lost in this battle with many differing opinions from the start. Once again we offer a heartfelt thank you, what a kind soul you are.
Rain
There are not enough words of gratitude for your response to my question. We see the doctor tomorrow and will inquiry about the Circulating IgG concetration tests. After reviewing the labs, they've yet to be done. With that being said their plan is to move forward with the autologus transplant after the usual pre eval testing. With the information you provided we feel that there are many questions we still need answered from the team here.
We would love to forward the case labs to you, for an opinion if that would be possible. We've been lost in this battle with many differing opinions from the start. Once again we offer a heartfelt thank you, what a kind soul you are.
Rain
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Rain - Name: Rain
- Who do you know with myeloma?: Signiicant Other
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 53
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