We're frustrated.
I realize that medicine is as much black art as it is science. However, are there numbers a transplant doc would like to see before proceeding to harvest and an autologous stem cell transplant?
Specifically, what number on the M-spike, the percentage of plasma cells in the bone marrow, results on the FISH report, IgG levels, etc?
My hubby started at high numbers, so all we're hearing is about how low they have become. However, if we proceed with harvest with stem cells that contain too high of XX, shouldn't we wait for better numbers? Why put back in stem cells loaded with cancer?
Hubby has had all the other tests, like for his heart. I'm asking specifically about myeloma-related numbers.
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wekebu - Name: Wendy
- Who do you know with myeloma?: Hubby
- When were you/they diagnosed?: Jan 2016
- Age at diagnosis: 55
Re: Lab results needed to proceed to stem cell transplant?
Hi wekebu
First of all, let me congratulate you and your husband on his "low numbers", It sounds as if he is responding to whatever therapy he is on.
Second, I have to tell you that I am just another multiple myeloma patient who has been wrestling with the issue of whether to have a stem cell transplant for some time. I have no medical training at all, so what I am about to tell you is based on my own experience and reading alone.
Having said that, I don't believe there are hard and fast numbers for M-spikes, plasma cell percentages in one's bone marrow, or FISH test results that determine categorically when a patient should have an autologous stem cell transplant, or specifically when to do the stem cell harvest for one. The current conventional wisdom is to try to get the M-spike or free light chain numbers (for light chain myeloma) down as low as possible before that. But I don't believe there are generally applicable specific numbers that one targets for these tests before proceeding with the harvest or the transplant itself.
It is true that things like chromosomal aberrations, as revealed by FISH test results, as well as other factors are important considerations in deciding on specific treatments.
I believe the level of myeloma in your husband's body is one such consideration among many others in making the decision on whether and when to have a transplant as well as when to do the stem cell harvest, and the best source of information for helping you make these decisions is the myeloma expert treating your husband.
You mentioned that you are frustrated. Perhaps there are grounds for you to get a second opinion, if you have not already done so (or even a third opinion, if you have) if you are dissatisfied with the guidance you and your husband are currently getting. It is important that this kind of input comes from an oncologist who specializes in multiple myeloma, just so you can be sure of benefitting from the latest knowledge in the fast-changing field of myeloma treatment.
Good luck, and I hope your husband continues to make progress!
First of all, let me congratulate you and your husband on his "low numbers", It sounds as if he is responding to whatever therapy he is on.
Second, I have to tell you that I am just another multiple myeloma patient who has been wrestling with the issue of whether to have a stem cell transplant for some time. I have no medical training at all, so what I am about to tell you is based on my own experience and reading alone.
Having said that, I don't believe there are hard and fast numbers for M-spikes, plasma cell percentages in one's bone marrow, or FISH test results that determine categorically when a patient should have an autologous stem cell transplant, or specifically when to do the stem cell harvest for one. The current conventional wisdom is to try to get the M-spike or free light chain numbers (for light chain myeloma) down as low as possible before that. But I don't believe there are generally applicable specific numbers that one targets for these tests before proceeding with the harvest or the transplant itself.
It is true that things like chromosomal aberrations, as revealed by FISH test results, as well as other factors are important considerations in deciding on specific treatments.
I believe the level of myeloma in your husband's body is one such consideration among many others in making the decision on whether and when to have a transplant as well as when to do the stem cell harvest, and the best source of information for helping you make these decisions is the myeloma expert treating your husband.
You mentioned that you are frustrated. Perhaps there are grounds for you to get a second opinion, if you have not already done so (or even a third opinion, if you have) if you are dissatisfied with the guidance you and your husband are currently getting. It is important that this kind of input comes from an oncologist who specializes in multiple myeloma, just so you can be sure of benefitting from the latest knowledge in the fast-changing field of myeloma treatment.
Good luck, and I hope your husband continues to make progress!
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Lab results needed to proceed to stem cell transplant?
Hello Wendy:
Going into the autologous stem cell transplant in February of last year, my wife's M-spike had dropped to 0.4 g/dL (which was good, since she started at 7.0). The doctors thought that reduction was very good, better than most would achieve when starting at a high level. As explained to me, however, the key parameter was the percent of plasma cells found during bone marrow biopsy. They targeted getting that below 5% going into the transplant, and she did get to 5% (she is treated at Sloan Kettering in New York). The field has been moving so fast, however, and there may be new criteria that they are shooting for.
Good luck to you and your husband.
Going into the autologous stem cell transplant in February of last year, my wife's M-spike had dropped to 0.4 g/dL (which was good, since she started at 7.0). The doctors thought that reduction was very good, better than most would achieve when starting at a high level. As explained to me, however, the key parameter was the percent of plasma cells found during bone marrow biopsy. They targeted getting that below 5% going into the transplant, and she did get to 5% (she is treated at Sloan Kettering in New York). The field has been moving so fast, however, and there may be new criteria that they are shooting for.
Good luck to you and your husband.
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JPC - Name: JPC
Re: Lab results needed to proceed to stem cell transplant?
Hi Wendy,
I'll second what JPC said. When EJ had his SCT they were happy that he had had a response to his induction therapy, but more interested in the percentage of plasma cells in his bone marrow biopsy. I believe they wanted it to be under 5%, too.
Good luck!
Lyn
I'll second what JPC said. When EJ had his SCT they were happy that he had had a response to his induction therapy, but more interested in the percentage of plasma cells in his bone marrow biopsy. I believe they wanted it to be under 5%, too.
Good luck!
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Lab results needed to proceed to stem cell transplant?
Hi Wendy (great name - my wife is Wendy too!),
You've gotten good information from the previous commenters on this thread. However, there is an additional piece of information that may be important in your husband's case.
Getting as deep a response before collecting stem cells needs to be balanced with the fact that "too much" chemotherapy sometimes makes it difficult or impossible to collect enough stem cells for a transplant. Revlimid is particularly known for this problem. I think it used to be recommended that a patient not be given more than six cycles of induction treatment that included Revlimid before proceeding to stem cell collection. That recommendation may have changed with newer stem cell mobilizers; I'm not sure.
So the best thing to do first is to express your concerns to your husband's current doctor and ask about the rationale for them recommending stem cell collection at this point. And, as others have suggested, getting a second or third opinion is also a viable option.
Best wishes to you and your husband. Please keep us posted on what the doctor(s) say, and how things go for your husband.
Mike
You've gotten good information from the previous commenters on this thread. However, there is an additional piece of information that may be important in your husband's case.
Getting as deep a response before collecting stem cells needs to be balanced with the fact that "too much" chemotherapy sometimes makes it difficult or impossible to collect enough stem cells for a transplant. Revlimid is particularly known for this problem. I think it used to be recommended that a patient not be given more than six cycles of induction treatment that included Revlimid before proceeding to stem cell collection. That recommendation may have changed with newer stem cell mobilizers; I'm not sure.
So the best thing to do first is to express your concerns to your husband's current doctor and ask about the rationale for them recommending stem cell collection at this point. And, as others have suggested, getting a second or third opinion is also a viable option.
Best wishes to you and your husband. Please keep us posted on what the doctor(s) say, and how things go for your husband.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Lab results needed to proceed to stem cell transplant?
To begin, thank you all for your responses. Sometimes I feel so alone here.
MrPH, thank you. I think I'm getting the concept. This explains why I couldn't get hard numbered goals from the docs. Although,I do wish they had explained the concept. To be fair, maybe they did, but there was just so much info in the beginning.
About a second opinion. Sadly, hubby has resisted every conversation about it.
Good luck with your decision and treatment.
JPC, your wife's numbers were great! I appreciate seeing other's numbers just to get a feeling. Plasma cell percentage at 5%, hubby is at 10% now. So maybe by transplant, now scheduled for August 31, he should be closer to 5%?
Lyn, thank you for confirming the 5%.
Mikeb, yes, we Wendys are few, but it is a great name. Unusual, but not 'too' unusual. Say hi to her for me.
This is starting to gel. We need to treat, but not hurt. Dave was on 4 cycles of Revlimid, Velcade, and dexamethasone, then 2 cycles of Kyprolis, Revlimid, and dex.
(Mikeb, as a side note, I've been reading your response to ACLinkBoca's stem cell transplant thread. Thank you for all your info. It has been helpful and encouraging.)
So with all this said, what's the opinion on these numbers? We are going to follow the doc's advice, just wanting Been-Through-It opinions.
Pre-Induction Feb 2016 / Current numbers
Plasma 95% / now 10%
FISH: gain in chromosome 9 + 15, medium risk / no current report
Current: Bone marrow interpretation: few CD56 + clonal plasma cells detected (<.1%)
Kappa FLC: 3.02 / now 0.70 (0.33-1.94 mg/dL)
Lambda FLC : 0.16 / now 0.31 (0.57-2.63 mg/dL)
K/L FLC ratio: 18.88 / now 2.26 (0.26 - 1.65)
IgG: 11570 / now 1140 (695-1618 mg/dL)
M-spike: 11.5 / now 0.9 (0 - 0 g/dL)
His liver and kidneys have tolerated treatment very well.
Now that I look at these, they are looking better than when he started. Anything that jumps out?
MrPH, thank you. I think I'm getting the concept. This explains why I couldn't get hard numbered goals from the docs. Although,I do wish they had explained the concept. To be fair, maybe they did, but there was just so much info in the beginning.
About a second opinion. Sadly, hubby has resisted every conversation about it.
Good luck with your decision and treatment.
JPC, your wife's numbers were great! I appreciate seeing other's numbers just to get a feeling. Plasma cell percentage at 5%, hubby is at 10% now. So maybe by transplant, now scheduled for August 31, he should be closer to 5%?
Lyn, thank you for confirming the 5%.
Mikeb, yes, we Wendys are few, but it is a great name. Unusual, but not 'too' unusual. Say hi to her for me.
This is starting to gel. We need to treat, but not hurt. Dave was on 4 cycles of Revlimid, Velcade, and dexamethasone, then 2 cycles of Kyprolis, Revlimid, and dex.
(Mikeb, as a side note, I've been reading your response to ACLinkBoca's stem cell transplant thread. Thank you for all your info. It has been helpful and encouraging.)
So with all this said, what's the opinion on these numbers? We are going to follow the doc's advice, just wanting Been-Through-It opinions.
Pre-Induction Feb 2016 / Current numbers
Plasma 95% / now 10%
FISH: gain in chromosome 9 + 15, medium risk / no current report
Current: Bone marrow interpretation: few CD56 + clonal plasma cells detected (<.1%)
Kappa FLC: 3.02 / now 0.70 (0.33-1.94 mg/dL)
Lambda FLC : 0.16 / now 0.31 (0.57-2.63 mg/dL)
K/L FLC ratio: 18.88 / now 2.26 (0.26 - 1.65)
IgG: 11570 / now 1140 (695-1618 mg/dL)
M-spike: 11.5 / now 0.9 (0 - 0 g/dL)
His liver and kidneys have tolerated treatment very well.
Now that I look at these, they are looking better than when he started. Anything that jumps out?
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wekebu - Name: Wendy
- Who do you know with myeloma?: Hubby
- When were you/they diagnosed?: Jan 2016
- Age at diagnosis: 55
Re: Lab results needed to proceed to stem cell transplant?
Hello again Wendy:
Just to close out the thought we were discussing. At above 5%, Sloan-Kettering targets adding cyclophosphamide conditioning. That will in the vast majority of cases have a reduction in the plasma cell percentage. They shoot for the 5%, but will take what they get, and proceed to transplant. My understanding is that at 10%, there's very good chance the 5% would be reached. Also, the cyclophosphamide has a stimulative effect on stem cell production, which is an added benefit. I have also come to understand that this is not done exactly the same at all of the different centers, but I am suspecting they may bring up "cyclophosphamide conditioning" in your husband's case.
Also, starting out at a 95% plasma cell percentage, that is an impressive reduction, and also with regard to your starting M-spike of 11.5 g/dL, too! In our case, we came to accept that since the multiple myeloma moved so fast so quickly, we needed heavier treatment. We did, thank God, reach a complete response (CR), but it was not until after post stem cell transplant consolidation.
Good luck to you.
Just to close out the thought we were discussing. At above 5%, Sloan-Kettering targets adding cyclophosphamide conditioning. That will in the vast majority of cases have a reduction in the plasma cell percentage. They shoot for the 5%, but will take what they get, and proceed to transplant. My understanding is that at 10%, there's very good chance the 5% would be reached. Also, the cyclophosphamide has a stimulative effect on stem cell production, which is an added benefit. I have also come to understand that this is not done exactly the same at all of the different centers, but I am suspecting they may bring up "cyclophosphamide conditioning" in your husband's case.
Also, starting out at a 95% plasma cell percentage, that is an impressive reduction, and also with regard to your starting M-spike of 11.5 g/dL, too! In our case, we came to accept that since the multiple myeloma moved so fast so quickly, we needed heavier treatment. We did, thank God, reach a complete response (CR), but it was not until after post stem cell transplant consolidation.
Good luck to you.
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JPC - Name: JPC
Re: Lab results needed to proceed to stem cell transplant?
My husband's doctor said 20% would be acceptable for him as long as his other test were good. We were lucky and there was not detectable disease in his bone marrow. I am sure they don't want it too high, but I also think it has a small margin option between doctors and each individual patient.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Lab results needed to proceed to stem cell transplant?
Hi again Wendy,
Thanks for the hi to my wife, Wendy. She says hi back.
As JPC said, your husband's response looks encouraging to me too. He started off with some pretty high numbers, so to get where he is now is really good.
One other thing in your report caught my eye – the gain(9) and gain(15) in the FISH results. My myeloma specialist told me that a gain in an odd numbered chromosome other than chromosome 1 is a slightly positive prognosticator. If you have that and no other FISH mutations, it's still considered "standard risk" disease, but definitely better than intermediate risk or high risk. I have gain(11, can't recall if it's p or q at the moment), by the way.
And to follow up on something from JPC, I also am being treated at Sloan Kettering, and I received the cyclophosphamide (Cytoxan) conditioning that he mentioned. I don't recall exactly what my plasma cell percentage was after induction, but I think it might have been 10%. I know for sure it was more than 5%.
Best wishes,
Mike
Thanks for the hi to my wife, Wendy. She says hi back.
As JPC said, your husband's response looks encouraging to me too. He started off with some pretty high numbers, so to get where he is now is really good.
One other thing in your report caught my eye – the gain(9) and gain(15) in the FISH results. My myeloma specialist told me that a gain in an odd numbered chromosome other than chromosome 1 is a slightly positive prognosticator. If you have that and no other FISH mutations, it's still considered "standard risk" disease, but definitely better than intermediate risk or high risk. I have gain(11, can't recall if it's p or q at the moment), by the way.
And to follow up on something from JPC, I also am being treated at Sloan Kettering, and I received the cyclophosphamide (Cytoxan) conditioning that he mentioned. I don't recall exactly what my plasma cell percentage was after induction, but I think it might have been 10%. I know for sure it was more than 5%.
Best wishes,
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Lab results needed to proceed to stem cell transplant?
I am feeling so much better! As they say, attitude counts. Mine is now improved greatly.
JPC – Thanks for the cyclophosphamide info and for the plasma cell percentage info. At what point was the cyclophosphamide given?
Cathy – I've been following your husband's transplant. Thanks for the 20% info.
Mikeb – You know your stuff. Yes, Dave is considered standard risk. Good to know that a gain of an odd chromosome is slightly good news.
We go in one week to talk to the transplant doc and get our 4-hour overview of the process. Then on the 11th he gets his catheter. Harvest should be on the 15th!
JPC – Thanks for the cyclophosphamide info and for the plasma cell percentage info. At what point was the cyclophosphamide given?
Cathy – I've been following your husband's transplant. Thanks for the 20% info.
Mikeb – You know your stuff. Yes, Dave is considered standard risk. Good to know that a gain of an odd chromosome is slightly good news.
We go in one week to talk to the transplant doc and get our 4-hour overview of the process. Then on the 11th he gets his catheter. Harvest should be on the 15th!
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wekebu - Name: Wendy
- Who do you know with myeloma?: Hubby
- When were you/they diagnosed?: Jan 2016
- Age at diagnosis: 55
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