My initial diagnosis was primary plasma cell leukemia. I recently relapsed after 18 months of remission on Revlimid after my ASCT. I had a CR to chemo before my transplant.
Now I am getting several different options after another 2 rounds of VDT-PACE.
#1. I need an allogeneic (donor) transplant ASAP.
#2. We should consider doing on autologous (own) transplant and an allo transplant.
#3. I have even heard that one doctor is considering a cord blood transplant!
As for #1: I knew that was going to be the goal, as my first transplanter wanted to do an allo the first time and then said, first sign of relapse you need an allo.
As for #2: I do have frozen stem cells that could be used for another auto. I know that the auto can put me into a deeper remission so the allo can work better. But I know that the remission from a second auto SCT is much shorter than the original. Plus I was very sick with the auto transplant, so I am not sure how long I would have to wait for the allo if I am so sick again.
As for #3: As of this writing, they have not found a donor for me, perhaps that is why this doc is thinking this way. However, I was told myeloma patients don't receive cord blood transplants.
Just how much time will I have to find a donor, before I lose the remission my doctor has given to me once again?
What do patients do who do not have a suitable donor??
What a dilemma. I am in the hospital, chemo done, but blood counts dropping (nadir).
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WeatherNurse13 - Name: Gracie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 10/2012
- Age at diagnosis: 49
Re: Relapsed primary plasma cell leukemia - transplant woes
You ask many good questions. Certainly bridging you to an allo stem cell transplant (SCT) should be the goal.
If no suitable donor can be found, a cord blood transplant becomes an option, but as you have mentioned, this is not a conventional approach. I don't think another autologous SCT will add much to the VDT-PACE you have received, so would not be something I would likely consider.
There is no way to know how long your remission may last, but with plasma cell leukemia, these are, unfortunately, not usually very long. Your doctors might consider Kyprolis and Pomalyst as other agents that might help hold the disease while the allo SCT options are being investigated.
Hope you recover from your recent treatment rapidly.
If no suitable donor can be found, a cord blood transplant becomes an option, but as you have mentioned, this is not a conventional approach. I don't think another autologous SCT will add much to the VDT-PACE you have received, so would not be something I would likely consider.
There is no way to know how long your remission may last, but with plasma cell leukemia, these are, unfortunately, not usually very long. Your doctors might consider Kyprolis and Pomalyst as other agents that might help hold the disease while the allo SCT options are being investigated.
Hope you recover from your recent treatment rapidly.
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Dr. James Hoffman - Name: James E. Hoffman, M.D.
Beacon Medical Advisor
Re: Relapsed primary plasma cell leukemia - transplant woes
Thank you! I appreciate it so much. So many things to consider about transplant, quality of life, and the future.
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WeatherNurse13 - Name: Gracie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 10/2012
- Age at diagnosis: 49
Re: Relapsed primary plasma cell leukemia - transplant woes
What will the allo do for me? How long will the remission last? Should I expect long term results or just another stepping stone.
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WeatherNurse13 - Name: Gracie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 10/2012
- Age at diagnosis: 49
Re: Relapsed primary plasma cell leukemia - transplant woes
Hi Gracie,
Sorry to hear about your relapse. I also had very high risk disease that included circulating plasma cells. Our prognosis was similar according to this recent study. CPC's are circulating plasma cells.
"multiple myeloma patients with CPCs had a clearly inferior PFS and OS as compared with the control cohort. Most interestingly, although the CPCs were not high enough to meet the diagnostic criteria for pPCL, the survival of multiple myeloma patients with CPCs was comparable with that of pPCL, with a median PFS of 17 months and an OS of 25 months."
G An et al, "Multiple myeloma patients with low proportion of circulating plasma cells had similar survival with primary plasma cell leukemia patients," Annals of Hematology, September 2014
I did an allo transplant in first complete response. I have been in a sustained molecular response (PCR negative) for close to 3.5 years. The only drug I currently take is Zometa. Allos can be very successful for any high risk blood cancer. They are commonly used for aggressive diseases like acute myeloid leukemia and acute lymphoid leukemia.
Unfortunately they are not as effective after a patient relapses. It is very important that a patient is in remission prior to doing an allogeneic transplant. While I am sure there are no studies available for relapsed primary plasma cell leukemia patients specifically, as a general "rule of thumb" there is about a 10-20% chance of long term disease remission/cure for a relapsed blood cancer patient that does an allo transplant.
"Stem-cell transplantation from allogeneic donors may be curative for 10–20% of patients with chemotherapy-resistant, refractory hematologic malignancies, and for up to 80% of patients who are transplanted in remission. Much of the high response and curative potential of allografts is attributed to a ‘graft-versus-tumor’ effect. In patients with multiple myeloma this effect has been well documented."
WI Bensinger, "Is there still a role for allogeneic stem-cell transplantation in multiple myeloma?," Best Practice & Research Clinical Haematology," December 2007
I was fortunate that I had an unrelated donor on the Be The Match Registry when I was in need. I would encourage anyone reading this to discuss with any healthy person they know about them potentially becoming a stem cell donor. I do not have to tell anyone reading this how important it is for a blood cancer patient to have hope that they can get their "old life" back. Unfortunately many younger patients never get the opportunity I had.
Positive energy being sent your way that you stay in remission and find a donor, if that is the therapy you choose to pursue.
Mark
Sorry to hear about your relapse. I also had very high risk disease that included circulating plasma cells. Our prognosis was similar according to this recent study. CPC's are circulating plasma cells.
"multiple myeloma patients with CPCs had a clearly inferior PFS and OS as compared with the control cohort. Most interestingly, although the CPCs were not high enough to meet the diagnostic criteria for pPCL, the survival of multiple myeloma patients with CPCs was comparable with that of pPCL, with a median PFS of 17 months and an OS of 25 months."
G An et al, "Multiple myeloma patients with low proportion of circulating plasma cells had similar survival with primary plasma cell leukemia patients," Annals of Hematology, September 2014
I did an allo transplant in first complete response. I have been in a sustained molecular response (PCR negative) for close to 3.5 years. The only drug I currently take is Zometa. Allos can be very successful for any high risk blood cancer. They are commonly used for aggressive diseases like acute myeloid leukemia and acute lymphoid leukemia.
Unfortunately they are not as effective after a patient relapses. It is very important that a patient is in remission prior to doing an allogeneic transplant. While I am sure there are no studies available for relapsed primary plasma cell leukemia patients specifically, as a general "rule of thumb" there is about a 10-20% chance of long term disease remission/cure for a relapsed blood cancer patient that does an allo transplant.
"Stem-cell transplantation from allogeneic donors may be curative for 10–20% of patients with chemotherapy-resistant, refractory hematologic malignancies, and for up to 80% of patients who are transplanted in remission. Much of the high response and curative potential of allografts is attributed to a ‘graft-versus-tumor’ effect. In patients with multiple myeloma this effect has been well documented."
WI Bensinger, "Is there still a role for allogeneic stem-cell transplantation in multiple myeloma?," Best Practice & Research Clinical Haematology," December 2007
I was fortunate that I had an unrelated donor on the Be The Match Registry when I was in need. I would encourage anyone reading this to discuss with any healthy person they know about them potentially becoming a stem cell donor. I do not have to tell anyone reading this how important it is for a blood cancer patient to have hope that they can get their "old life" back. Unfortunately many younger patients never get the opportunity I had.
Positive energy being sent your way that you stay in remission and find a donor, if that is the therapy you choose to pursue.
Mark
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Mark11
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