Hi,
My husband, 48 at diagnosis in November, 2015, had 4 rounds of Revlimid and dexamethasone treatment and then an autologous stem cell transplant on June 1, 2016.
We just had a Day +75 day follow up, and his M protein did not change, so they say this is a failed transplant. M protein is 0.15 g/dL. Started at 7.71 g/dL at diagnosis.
The plan is to begin Revlimid maintenance at a low dosage next week.
I'm feeling so let down that he went thru all of what a transplant takes to get no change whatsoever. The doctor says my husband's M protein is very low and calls this a very good partial response (VGPR).
Has anyone had a similar situation?
My husband responded very well to initial treatment, and the doctor says his M protein could drop lower with maintenance, but I'm feeling afraid to hope
Forums
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MaryBrit - Name: MaryBrit
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 48
Re: Failed autologous stem cell transplant
Hi MaryBrit,
I'm surprised that at 75 days out your doctor is saying your husband's transplant failed. Do you know what his M-spike was right before his transplant?
Typically doctors don't assess how well a transplant did until Day +100. Up until then, the numbers can change. Even after Day +100, the M-spike can still come down! If I remember correctly, EJ's M-spike was at 0.7 g/dl before his stem cell transplant, and it was at 0.4 g/dl at Day +100. Even after Day +100, it came down a bit, and settled at 0.1 g/dl. This was in 2011, and he just started treatment again earlier this year. I consider his stem cell transplant a success, even if he didn't get down to 0.
Good luck,
Lyn
I'm surprised that at 75 days out your doctor is saying your husband's transplant failed. Do you know what his M-spike was right before his transplant?
Typically doctors don't assess how well a transplant did until Day +100. Up until then, the numbers can change. Even after Day +100, the M-spike can still come down! If I remember correctly, EJ's M-spike was at 0.7 g/dl before his stem cell transplant, and it was at 0.4 g/dl at Day +100. Even after Day +100, it came down a bit, and settled at 0.1 g/dl. This was in 2011, and he just started treatment again earlier this year. I consider his stem cell transplant a success, even if he didn't get down to 0.
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: Failed autologous stem cell transplant
I second Christa's Mom. Too early to say it "failed". Looks like it was a very low M-spike going into transplant, and I gather it is the same at 75 days? Normally they wait until three months to test and evaluate.
I can tell you my own journey. Diagnosed with a very high M-spike. After induction it was not zero, but I had a very good partial response (VGPR). Between induction and transplant it went up! After transplant it dropped to the after-treatment level for a while, then at 6 months it was zero and stayed there for 5 years.
I was told that with a VGPR I could expect the same longer remission as if it was zero. Revlimid maintenance seems to be common now even for folks who have zero M-spike.
I can tell you my own journey. Diagnosed with a very high M-spike. After induction it was not zero, but I had a very good partial response (VGPR). Between induction and transplant it went up! After transplant it dropped to the after-treatment level for a while, then at 6 months it was zero and stayed there for 5 years.
I was told that with a VGPR I could expect the same longer remission as if it was zero. Revlimid maintenance seems to be common now even for folks who have zero M-spike.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Failed autologous stem cell transplant
Hello MaryBrit:
Recent studies have shown that, for people who are in very good partial remission (VGPR), that about 35 to 40 percent get to a complete response (CR) with an autologous stem cell transplant. Also, studies have shown that even the patients who have stayed in the same status with a transplant do get somewhat longer progression-free survival from the transplant as compared to patients who forgo the transplant. Further, many (though I would not say most) have reported the possibility of a delayed response to the transplant, where the M-spike drops further. It just needs some time.
So as Lyn has suggested, the idea of "failing" the transplant might be a little premature at 75 days. That being said, however, my wife had her transplant in February of last year. Before induction, her M-spike was 7 g/dl (70 g/l). It went down to 0.4 g/dL on Revlimid, Velcade, and dexamethasone (RVD) induction therapy, but after the transplant it went down some more, but only to 0.2 g/dL, not to zero. So we know exactly how you feel – very very disappointing.
We thought it was important to reach a stringent complete response (sCR), and based on that the doctor got approval for consolidation therapy. Consolidation is additional induction treatment after the transplant for a number of rounds. The consolidation, in our case, resulted in the better result. In our case, the consolidation was Kyprolis, Revlimid, and dexamethasone (KRd).
Of course, a big issue would be how your husband tolerated the initial induction and stem cell transplant. If he tolerated it well, the consolidation could be an option in your case.
Good luck to you.
Recent studies have shown that, for people who are in very good partial remission (VGPR), that about 35 to 40 percent get to a complete response (CR) with an autologous stem cell transplant. Also, studies have shown that even the patients who have stayed in the same status with a transplant do get somewhat longer progression-free survival from the transplant as compared to patients who forgo the transplant. Further, many (though I would not say most) have reported the possibility of a delayed response to the transplant, where the M-spike drops further. It just needs some time.
So as Lyn has suggested, the idea of "failing" the transplant might be a little premature at 75 days. That being said, however, my wife had her transplant in February of last year. Before induction, her M-spike was 7 g/dl (70 g/l). It went down to 0.4 g/dL on Revlimid, Velcade, and dexamethasone (RVD) induction therapy, but after the transplant it went down some more, but only to 0.2 g/dL, not to zero. So we know exactly how you feel – very very disappointing.
We thought it was important to reach a stringent complete response (sCR), and based on that the doctor got approval for consolidation therapy. Consolidation is additional induction treatment after the transplant for a number of rounds. The consolidation, in our case, resulted in the better result. In our case, the consolidation was Kyprolis, Revlimid, and dexamethasone (KRd).
Of course, a big issue would be how your husband tolerated the initial induction and stem cell transplant. If he tolerated it well, the consolidation could be an option in your case.
Good luck to you.
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JPC - Name: JPC
Re: Failed autologous stem cell transplant
Hello MaryBrit,
I can speak from personal experience on this topic as I am going through it right now. I had a stem cell transplant in May and was released on May 27th. During my labs after 10 days from returning home, I learned that my kappa light chain level was over 100 already.
I felt the same way as you are expressing, and many of the forum members kept telling me to give the process time as my body's immune system was still reconstituting itself from the stem cell transplant. I saw my Myeloma specialist in the middle of June. My numbers increased to 183 in the first of July after seeing my myeloma specialist. He suggested when I get close to the 100 Day point, I start back on two more rounds of Revlimid, Velcade, and dexamethasone (RVD).
All the time, forum members were telling me that the numbers should go down. On August 2, I started my RVD for two rounds to give my myeloma a punch and to knock it down hard. Two weeks ago, just like the forum members suggested, my kappa light chain level came all the way down to 21 (2 points from normal).
I just finished my first cycle and will start on my 2nd cycle in September. As everyone has expressed, to say the transplant failed is not an accurate statement because your husband is about 30 days behind what I went though. Just like mine, I believe that the numbers will start improving.
I would suggest you to reach out to your myeloma specialist about at some point in time when you are close to the 100 day mark, you might consider the extra round or two to make sure the myeloma is hit and hit hard.
I wish you and your husband the best, and I hope your husband continues to improve and so will his numbers.
Anthony
I can speak from personal experience on this topic as I am going through it right now. I had a stem cell transplant in May and was released on May 27th. During my labs after 10 days from returning home, I learned that my kappa light chain level was over 100 already.
I felt the same way as you are expressing, and many of the forum members kept telling me to give the process time as my body's immune system was still reconstituting itself from the stem cell transplant. I saw my Myeloma specialist in the middle of June. My numbers increased to 183 in the first of July after seeing my myeloma specialist. He suggested when I get close to the 100 Day point, I start back on two more rounds of Revlimid, Velcade, and dexamethasone (RVD).
All the time, forum members were telling me that the numbers should go down. On August 2, I started my RVD for two rounds to give my myeloma a punch and to knock it down hard. Two weeks ago, just like the forum members suggested, my kappa light chain level came all the way down to 21 (2 points from normal).
I just finished my first cycle and will start on my 2nd cycle in September. As everyone has expressed, to say the transplant failed is not an accurate statement because your husband is about 30 days behind what I went though. Just like mine, I believe that the numbers will start improving.
I would suggest you to reach out to your myeloma specialist about at some point in time when you are close to the 100 day mark, you might consider the extra round or two to make sure the myeloma is hit and hit hard.
I wish you and your husband the best, and I hope your husband continues to improve and so will his numbers.
Anthony
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Failed autologous stem cell transplant
Thanks so much for the responses! That was my first post and it is wonderful to get such positive feedback!
My husband's M protein in April was 0.10 g/dL and he stopped the Revlimid and dexamethasone also in April to prep for transplant. They did not do another M protein until this check up. So technically at Day +75 when he had bloodwork their was a slight increase to the current 0.15 g/dL. The doctor said that small of a fluctuation will happen and was not a reason to panic. But after a stem cell transplant, you expect the M protein to drop, not go up even slightly! I suppose that is why they say it was not successful.
We are going to ask about consolidation therapy and they already started the paperwork to put him on maintenance Revlimid (10 mg).
Also, we heard that even though he did not have many side effects to induction therapy, that could change after transplant. Both induction and the stem cell transplant were tolerated extremely well. Hubby was released in 13 days from the stem cell transplant and recovered well.
Again, very grateful for the responses! This forum has been a wealth of information and support!
My husband's M protein in April was 0.10 g/dL and he stopped the Revlimid and dexamethasone also in April to prep for transplant. They did not do another M protein until this check up. So technically at Day +75 when he had bloodwork their was a slight increase to the current 0.15 g/dL. The doctor said that small of a fluctuation will happen and was not a reason to panic. But after a stem cell transplant, you expect the M protein to drop, not go up even slightly! I suppose that is why they say it was not successful.
We are going to ask about consolidation therapy and they already started the paperwork to put him on maintenance Revlimid (10 mg).
Also, we heard that even though he did not have many side effects to induction therapy, that could change after transplant. Both induction and the stem cell transplant were tolerated extremely well. Hubby was released in 13 days from the stem cell transplant and recovered well.
Again, very grateful for the responses! This forum has been a wealth of information and support!
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MaryBrit - Name: MaryBrit
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 48
Re: Failed autologous stem cell transplant
Hi MaryBrit,
Try not to panic too much over the increase. It is very small, and could be just an inconsistency with the lab. When assessing if things are changing, doctors usually want to see trends – i.e., is his M-spike rising over several months – not just a one month increase. I'd have them repeat his blood tests again at Day +100 before you make any decisions.
Lyn
Try not to panic too much over the increase. It is very small, and could be just an inconsistency with the lab. When assessing if things are changing, doctors usually want to see trends – i.e., is his M-spike rising over several months – not just a one month increase. I'd have them repeat his blood tests again at Day +100 before you make any decisions.
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: Failed autologous stem cell transplant
I'm sorry you're going through this intense angst. I know what you're going through. You're certainly not alone.
My M-spike did not change pre-autologous stem cell transplant (ASCT) to post-ASCT at all. I expressed my extreme disappointment to the oncologist. She explained that M-spike is a rough directional marker, not precise. At low levels, a bone marrow biopsy is needed to get an accurate read. They are much more interested in "PC" (whatever that is). I don't remember the numbers, but my "PC" dropped by 80%.
A study found that the quality of the stem cell transplant is surprisingly not predictive of overall survival. Rather, high risk factors are. Sorry I don't remember the reference. Can anyone help me out on this?
This explains a friend's experience. His post-transplant bone marrow biopsy showed no detectable cancer. Yet they put him on aggressive consolidation therapy just the same. He has high risk factors.
I get upset by every setback and assume the worst. My wife says "give it time".
I can't tell you how many times over the past two years that I was sure the latest setback would evolve very badly. And it never happened. A clinical social worker helped a great deal. If you haven't seen one, I highly recommend it.
Carl
My M-spike did not change pre-autologous stem cell transplant (ASCT) to post-ASCT at all. I expressed my extreme disappointment to the oncologist. She explained that M-spike is a rough directional marker, not precise. At low levels, a bone marrow biopsy is needed to get an accurate read. They are much more interested in "PC" (whatever that is). I don't remember the numbers, but my "PC" dropped by 80%.
A study found that the quality of the stem cell transplant is surprisingly not predictive of overall survival. Rather, high risk factors are. Sorry I don't remember the reference. Can anyone help me out on this?
This explains a friend's experience. His post-transplant bone marrow biopsy showed no detectable cancer. Yet they put him on aggressive consolidation therapy just the same. He has high risk factors.
I get upset by every setback and assume the worst. My wife says "give it time".
I can't tell you how many times over the past two years that I was sure the latest setback would evolve very badly. And it never happened. A clinical social worker helped a great deal. If you haven't seen one, I highly recommend it.
Carl
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faithoverfear - Who do you know with myeloma?: me
- When were you/they diagnosed?: Sept 2014
- Age at diagnosis: 63
Re: Failed autologous stem cell transplant
I am so thankful to read all this support! I just registered today to this site as a result of reading all these positive comments!
My husband had an autologoust stem cell transplant on September 22 and he is considered high risk disease with duplication of chromosome q21, and he has IgG lambda light chain multiple myeloma.
Please bear with me, this is a new language for us and am so grateful for all the expert knowledge on this site. Our doctor called us back in at day 60 because of his cytogenetics and responses to previous treatments. Though his doctor was enthusiastic that his PET scan was the same as pre transplant and his M-spike went from 0.5 to 0.1 g/dl (5 to 1 g/l) at Day 60, I was feeling like our transplant did not work that well.
So thank all of you for your insight to the 100-day response! Our results were fantastic with Darzalex, Pomalyst, and dexamethasone, reaching a very good partial response (VGPR), where we only got a partial reaponse (PR) with Velcade, Revlimid, and dexamethasone (VRD) and Kyprolis, Revlimid, and dexamethasone (KRD), with the second actually hospitalizing him with a fever spike of 103.5 F (39.7 C) without any infection.
We are waiting till day 90 to either go on Pomalyst maintenance or another round of Darzalex, Pomalyst, and dexamethasone.
They want us to consider a tandem with allogeneic transplant depending on his response and his high risk disease. Hoping not to go this route .
Learning that we will live life with multiple myeloma requires an adjustment period, and being diagnosed with kidney failure, M-spike of 9 g/dl (90 g/l) and a tumor marker IgG of 13,500 last Thanksgiving to this Thanksgiving feeling great and having a VGPR, we embrace the blessings in life with a new lens of gratitude.
Thank you and for any that read this and blessings during this holiday season.
My husband had an autologoust stem cell transplant on September 22 and he is considered high risk disease with duplication of chromosome q21, and he has IgG lambda light chain multiple myeloma.
Please bear with me, this is a new language for us and am so grateful for all the expert knowledge on this site. Our doctor called us back in at day 60 because of his cytogenetics and responses to previous treatments. Though his doctor was enthusiastic that his PET scan was the same as pre transplant and his M-spike went from 0.5 to 0.1 g/dl (5 to 1 g/l) at Day 60, I was feeling like our transplant did not work that well.
So thank all of you for your insight to the 100-day response! Our results were fantastic with Darzalex, Pomalyst, and dexamethasone, reaching a very good partial response (VGPR), where we only got a partial reaponse (PR) with Velcade, Revlimid, and dexamethasone (VRD) and Kyprolis, Revlimid, and dexamethasone (KRD), with the second actually hospitalizing him with a fever spike of 103.5 F (39.7 C) without any infection.
We are waiting till day 90 to either go on Pomalyst maintenance or another round of Darzalex, Pomalyst, and dexamethasone.
They want us to consider a tandem with allogeneic transplant depending on his response and his high risk disease. Hoping not to go this route .
Learning that we will live life with multiple myeloma requires an adjustment period, and being diagnosed with kidney failure, M-spike of 9 g/dl (90 g/l) and a tumor marker IgG of 13,500 last Thanksgiving to this Thanksgiving feeling great and having a VGPR, we embrace the blessings in life with a new lens of gratitude.
Thank you and for any that read this and blessings during this holiday season.
Re: Failed autologous stem cell transplant
HS,
Welcome to the forum. This disease is so scary it certainly can be overwhelming at times.
We are a little ahead of you in the treatment timeline, Janet and I started our journey a year and half ago.
At first blush I thought we had a failed transplant also since Janet's before and after M-spike reading was the same at 0.2 g/dl at 60 days. By Day 100 she had dropped to zero.
An interesting piece of info was that flow cytometry tests on her bone marrow both before and after her transplant actually came out minimal residual disease (MRD) negative! The sample sites were from the same hip as her original bone marrow biopsy that showed 60% plasma cell loading and 15K on her IgG marker.
The research oncologist is currently re-running the samples using something called clonal sequencing. it's supposed to have a 100 times greater resolution than flow cytometry. At this stage of the game, the oncologists don't really make treatment decisions based on flow cytometry testing due to the "spotty" nature of multiple myeloma.
FYI, our treatment regimen is as follows:
1 cycle of dex only (40 mg once per week)
2 more cycles of Revlimid (25 mg for 21 days) plus dex (40 mg once per week)
4 more cycles of Revlimid (25 mg for 14 days), plus weekly Velcade injection (2 mg), plus dex (40 mg once per week)
Stem cell harvest followed by high-dose chemotherapy and an autologous stem cell transplant on March 16th, 2016.
Currently on 10 mg Revlimid maintenance.
I wish you and your husband all the best!
All things considered, it sounds like your husband is responding well!
Although things can be rough, both you and I have something to be thankful for.
John
Welcome to the forum. This disease is so scary it certainly can be overwhelming at times.
We are a little ahead of you in the treatment timeline, Janet and I started our journey a year and half ago.
At first blush I thought we had a failed transplant also since Janet's before and after M-spike reading was the same at 0.2 g/dl at 60 days. By Day 100 she had dropped to zero.
An interesting piece of info was that flow cytometry tests on her bone marrow both before and after her transplant actually came out minimal residual disease (MRD) negative! The sample sites were from the same hip as her original bone marrow biopsy that showed 60% plasma cell loading and 15K on her IgG marker.
The research oncologist is currently re-running the samples using something called clonal sequencing. it's supposed to have a 100 times greater resolution than flow cytometry. At this stage of the game, the oncologists don't really make treatment decisions based on flow cytometry testing due to the "spotty" nature of multiple myeloma.
FYI, our treatment regimen is as follows:
1 cycle of dex only (40 mg once per week)
2 more cycles of Revlimid (25 mg for 21 days) plus dex (40 mg once per week)
4 more cycles of Revlimid (25 mg for 14 days), plus weekly Velcade injection (2 mg), plus dex (40 mg once per week)
Stem cell harvest followed by high-dose chemotherapy and an autologous stem cell transplant on March 16th, 2016.
Currently on 10 mg Revlimid maintenance.
I wish you and your husband all the best!
All things considered, it sounds like your husband is responding well!
Although things can be rough, both you and I have something to be thankful for.
John
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JohnBoy5456 - Name: John
- Who do you know with myeloma?: Janet
- When were you/they diagnosed?: 6/15/15
- Age at diagnosis: 64
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