Hi there.
My mom was recently diagnosed (3 weeks ago) with primary plasma cell leukemia. It obviously was a huge shock to our family and we are still trying to wrap our heads around it. She started Velcade / Cytoxan [cyclophosphamide] / a steroid and is currently in the induction phase. She is on her 2nd two-week cycle.
The doctor told me privately that her prognosis even with chemo is "grim," but he also spoke about the possibility of achieving complete remission. To me, that seems sort of contradictory, but I suppose complete remission can be very fleeting?
This is my first experience with cancer of any kind, let alone something this insidious, so I'm just trying to get a sense from anyone with experience about what to expect in the coming weeks / months.
My mom is responding positively to the therapy, as evidenced by diminishing kappa light chains in her blood (she started in the 1700s and is now in the 40s).
So ... how does this all work? Once her numbers get into the normal range, will they discontinue chemo? And then is it just a waiting game for relapse? And will her body be more resistant to chemo the 2nd time around?
The doctor never gave us a quantitative prognosis, so I don't know if we can expect her to be here for months or years. It's all so confusing. I am very practical and I just want a better sense of how this process works. Thanks in advance.
Forums
Re: Questions about plasma cell leukemia
Very sorry to hear about your mother's situation, Maura.
There was recently a discussion about plasma cell leukemia in this forum thread:
https://myelomabeacon.org/forum/mom-in-icu-fighting-for-her-life-t1840.html
You may find some of the information there, including a couple of the links, helpful.
You did not mention whether your mother's PCL is primary, or whether it developed secondary to multiple myeloma. I seem to recall from some of the reading I did that this may affect both her prognosis and the best treatment options for her.
There was recently a discussion about plasma cell leukemia in this forum thread:
https://myelomabeacon.org/forum/mom-in-icu-fighting-for-her-life-t1840.html
You may find some of the information there, including a couple of the links, helpful.
You did not mention whether your mother's PCL is primary, or whether it developed secondary to multiple myeloma. I seem to recall from some of the reading I did that this may affect both her prognosis and the best treatment options for her.
Re: Questions about plasma cell leukemia
Hi Terry. Thanks so much for responding. My mom has primary PCL - she never presented with multiple myeloma prior to this. I think that that confers a slightly better prognosis, but I think it's still pretty dire.
Thanks for the link. I'll look now.
Anyone else out there with any experience with this? Thanks again
Thanks for the link. I'll look now.
Anyone else out there with any experience with this? Thanks again
Re: Questions about plasma cell leukemia
Hi, I was diagnosed with plasma cell leukemia in September of 2009. I did 6 rounds of chemo. I did it once a week, and each round was a cocktail of different chemos and steroids. After 6 months of chemo, I did an autologous stem cell transplant in Tucson, AZ. I have been in remission since. Last May was my 3 year transplant anniversary.
I have been on Revlimid 15 mg ever since the transplant. I do lab work every two or three months and have a bone marrow biopsy once a year. My blood counts have stayed in the normal range. My multiple myeloma has been great as far as having no lesions on my bones.
Steve
I have been on Revlimid 15 mg ever since the transplant. I do lab work every two or three months and have a bone marrow biopsy once a year. My blood counts have stayed in the normal range. My multiple myeloma has been great as far as having no lesions on my bones.
Steve
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texas-tea13 - Name: Steve
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 09/19/2009
- Age at diagnosis: 59
Re: Questions about plasma cell leukemia
Hi. I have primary plasma cell leukemia. I was diagnosed last October at only 40 years old and began chemo right away, due to how aggressive PCL is. My first bone marrow biopsy showed 74% of my white blood cells were cancerous plasma cells. I did my first chemo cycle on Velcade, Cytoxan and dexamethasone. Aft that, we did three cycles of Revlimid, Velcade and dexamethasone. After all of that, we did an autologous stem cell transplant on February 22.
Because of how aggressive PCL would be at the end of whatever kind of remission we could achieve, and because Velcade had given me pretty bad neuropathy in my feet (and that is the go-to drug for maintenance), we decided to do what's called a tandem transplant, which is when you do an allogeneic (donor) transplant shortly following the auto transplant. The auto transplant in that case is to sort of "shock" the cancer into remission, then the allo transplant is to (hopefully) be a curative measure. There are no guarantees of a cure, but there is no cure - only remission then relapse - with auto transplants.
I just got home on Friday after my allo transplant and I feel as good as you could expect. My bone marrow biopsy before my allo showed only 1% plasma cells nearly three months following my auto.
Now, I'm only 40 (41 in less than two weeks), and the average age for multiple myeloma and PCL is in one's 60s. I think that can affect the prognosis a great deal, as people in their 60s typically have other peripheral health issues which can affect their ability to deal with or recover from the chemo and the transplants. Because I'm young, relatively strong, and in perfect health (other than the PCL, of course), the chemo only affected my ability to work and do other things to a small degree. My recovery from my first (auto) transplant was fast (I walked a 5K only 2 1/2 weeks after being released from the hospital), and I'm feeling great after my allo.
I'm curious: how old is your mother, and what's her general health like? That can impact a lot of things. Honestly, if I were in my 70s or 80s, there's no way I'd go through the transplants at all. They are hell on the body. For about a week with each one, I felt like death just slightly warmed over. I think most doctors for those patients would just recommend chemo to see if they can get the cancer to go away for a while, then just enjoy what's left of your life and say your goodbyes. The transplants are just too hard on the body for someone that age.
Well, I hope this post has helped. If she has a donor that can be found, then there is a chance at a cure. If not, then remission is your best hope. I wish your mother and your family all the best as you go through this.
Because of how aggressive PCL would be at the end of whatever kind of remission we could achieve, and because Velcade had given me pretty bad neuropathy in my feet (and that is the go-to drug for maintenance), we decided to do what's called a tandem transplant, which is when you do an allogeneic (donor) transplant shortly following the auto transplant. The auto transplant in that case is to sort of "shock" the cancer into remission, then the allo transplant is to (hopefully) be a curative measure. There are no guarantees of a cure, but there is no cure - only remission then relapse - with auto transplants.
I just got home on Friday after my allo transplant and I feel as good as you could expect. My bone marrow biopsy before my allo showed only 1% plasma cells nearly three months following my auto.
Now, I'm only 40 (41 in less than two weeks), and the average age for multiple myeloma and PCL is in one's 60s. I think that can affect the prognosis a great deal, as people in their 60s typically have other peripheral health issues which can affect their ability to deal with or recover from the chemo and the transplants. Because I'm young, relatively strong, and in perfect health (other than the PCL, of course), the chemo only affected my ability to work and do other things to a small degree. My recovery from my first (auto) transplant was fast (I walked a 5K only 2 1/2 weeks after being released from the hospital), and I'm feeling great after my allo.
I'm curious: how old is your mother, and what's her general health like? That can impact a lot of things. Honestly, if I were in my 70s or 80s, there's no way I'd go through the transplants at all. They are hell on the body. For about a week with each one, I felt like death just slightly warmed over. I think most doctors for those patients would just recommend chemo to see if they can get the cancer to go away for a while, then just enjoy what's left of your life and say your goodbyes. The transplants are just too hard on the body for someone that age.
Well, I hope this post has helped. If she has a donor that can be found, then there is a chance at a cure. If not, then remission is your best hope. I wish your mother and your family all the best as you go through this.
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John P
Re: Questions about plasma cell leukemia
Hi Maura82,
Sorry to hear that your mother has primary PCL. Yes, it is common that patients that get an excellent initial response to therapy can relapse quickly and have a poor outcome. That is one of the subgroups of myeloma patients that does not do as well as other subgroups. One of the best subgroups of myeloma patients are those that never get a complete response but return to a MGUS / smoldering myeloma state.
Primary PCL seems to be a lot like AML (acute myeloid leukemia). 70-80% of AML patients go into remission in about 2-4 weeks when doing their intensive induction therapy. Take note, both Teas and John P were in remission after their auto. Most AML patients have a high risk of early relapse like PCL patients, and AML is tough to treat at relapse. On the plus side is that AML is curable if a patient does an allo transplant in first complete response.
I was introduced to a primary PCL patient that did an allo about 6 years ago and he is in a molecular remission. His doctors think he is likely cured at this point. Hopefully John P will have that great of an outcome. It is great to hear that Texas Tea is doing great without an allo as well.
Bortezomib (Velcade) followed by tandem auto allo for primary PCL was the subject of a published case study recently, and the authors mention that they are hopeful PCL will be become considered a curable disease like myeloma is with that combination of therapy in the future.
R Ozasa et al, "Therapeutic effect of bortezomib for primary plasma cell leukemia followed by auto/allo stem cell transplantation," Int Med Case Rep J. 2012; 5: 39 - 43 (full text at PubMed)
Best of luck to your family and your mother as things progress.
Mark
Sorry to hear that your mother has primary PCL. Yes, it is common that patients that get an excellent initial response to therapy can relapse quickly and have a poor outcome. That is one of the subgroups of myeloma patients that does not do as well as other subgroups. One of the best subgroups of myeloma patients are those that never get a complete response but return to a MGUS / smoldering myeloma state.
Primary PCL seems to be a lot like AML (acute myeloid leukemia). 70-80% of AML patients go into remission in about 2-4 weeks when doing their intensive induction therapy. Take note, both Teas and John P were in remission after their auto. Most AML patients have a high risk of early relapse like PCL patients, and AML is tough to treat at relapse. On the plus side is that AML is curable if a patient does an allo transplant in first complete response.
I was introduced to a primary PCL patient that did an allo about 6 years ago and he is in a molecular remission. His doctors think he is likely cured at this point. Hopefully John P will have that great of an outcome. It is great to hear that Texas Tea is doing great without an allo as well.
Bortezomib (Velcade) followed by tandem auto allo for primary PCL was the subject of a published case study recently, and the authors mention that they are hopeful PCL will be become considered a curable disease like myeloma is with that combination of therapy in the future.
R Ozasa et al, "Therapeutic effect of bortezomib for primary plasma cell leukemia followed by auto/allo stem cell transplantation," Int Med Case Rep J. 2012; 5: 39 - 43 (full text at PubMed)
Best of luck to your family and your mother as things progress.
Mark
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Mark
Re: Questions about plasma cell leukemia
Hi all. First of all, wow - thank you all so much for these replies. Just to connect with another human being who has first hand experience with this illness is so helpful. I'm so happy to hear how effective stem cell transplants have proven for some of you.
To answer the questions: My mom is 66. Upon diagnosis, she had a calcium level of 14, renal failure, pleural effusions, multiple lytic lesions on her ribs and pelvis, and the bone marrow biopsy showed 95% plasma cells.
Apparently, she is responding well to the CyBorD treatment. However, today when we met with the doctor after her shot, he said that they are going to need to be more aggressive. Starting next week, she will be doing inpatient chemo every 3 weeks (4 days in hospital) with the regular twice-weekly CyBorD regimen during the weeks in between. He says it will drastically impact her quality of life.
I wasn't able to properly formulate questions because my mom was in the room, and I also was so caught off guard. But I wonder if this means she in fact isn't responding well?
I'm so confused. He said this is still considered the induction phase. But if she's responding well, why get more aggressive? Any insight?
Again, thanks so much. This forum is an invaluable help.
To answer the questions: My mom is 66. Upon diagnosis, she had a calcium level of 14, renal failure, pleural effusions, multiple lytic lesions on her ribs and pelvis, and the bone marrow biopsy showed 95% plasma cells.
Apparently, she is responding well to the CyBorD treatment. However, today when we met with the doctor after her shot, he said that they are going to need to be more aggressive. Starting next week, she will be doing inpatient chemo every 3 weeks (4 days in hospital) with the regular twice-weekly CyBorD regimen during the weeks in between. He says it will drastically impact her quality of life.
I wasn't able to properly formulate questions because my mom was in the room, and I also was so caught off guard. But I wonder if this means she in fact isn't responding well?
I'm so confused. He said this is still considered the induction phase. But if she's responding well, why get more aggressive? Any insight?
Again, thanks so much. This forum is an invaluable help.
Re: Questions about plasma cell leukemia
I was diagnosed with PCL at age 49 in October 2012. Had 3 rounds of VDT-PACE and 1 round of CyBorD before my auto stem cell transplant February 22, 2013. (Looks like I share a transplant birthday with John!) They hurried me to transplant since I had such a good response to chemo. The doctor wanted to do an allo transplant, but I had no matches.
100 days later, my bone marrow biopsy results were complete response. I am now on Revlimid 10 mg for maintenance. Almost done with my first month. So far, no bad side effects.
My doctor doesn't talk about prognosis because it is so different depending on so many factors. I am ok with that, too. It keeps me positive and not counting how many days I have left. The transplant doctor, however, was a more about doom and gloom about my very very bad disease. I try not to think about it, but some days it is hard. Words planted in your head are difficult to erase.
Fatigue, pain in my back, hips and pelvis, and an unknown rash are the symptoms I deal with right now. Also getting over pneumonitis.
Since my immunizations were wiped clean from the melphalan and SCT, I am not able to return to work right now. Not sure how this will turn out yet. Working in the medical field, having your shots up to date is important. My re-immunization starts next month.
In remission for 6 months and positive about the future.
100 days later, my bone marrow biopsy results were complete response. I am now on Revlimid 10 mg for maintenance. Almost done with my first month. So far, no bad side effects.
My doctor doesn't talk about prognosis because it is so different depending on so many factors. I am ok with that, too. It keeps me positive and not counting how many days I have left. The transplant doctor, however, was a more about doom and gloom about my very very bad disease. I try not to think about it, but some days it is hard. Words planted in your head are difficult to erase.
Fatigue, pain in my back, hips and pelvis, and an unknown rash are the symptoms I deal with right now. Also getting over pneumonitis.
Since my immunizations were wiped clean from the melphalan and SCT, I am not able to return to work right now. Not sure how this will turn out yet. Working in the medical field, having your shots up to date is important. My re-immunization starts next month.
In remission for 6 months and positive about 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: Questions about plasma cell leukemia
Dear Maura82,
It sounds as though your mother's doctors are switching over to VDT-PACE chemotherapy, or something of that ilk. Is that the case? If it is, one reason for the change may be that they used CyBorD initially in its place due to kidney failure. Perhaps they wanted to get things under control and improve the kidney function prior to considering VDT-PACE (the P in VDT-PACE, or cisplatin, cannot be given in the setting of kidney failure).
Another reason for the change would be that the response was plateauing (the disease responded, but was not going into a deeper response), or the disease was showing signs of progression. I would clarify this with your mother's doctors.
Bortezomib-based induction therapy is definitely the way to go in the setting of plasma cell leukemia. VDT-PACE is commonly used, especially for younger patients. At 66, this could be challenging. CyBorD or RVD are very good options for those in whom VDT-PACE would be too toxic.
After initial disease control, a transplant approach is typically considered for those who are eligible for such an approach. A fully ablative allogeneic stem cell transplant would be considered for a younger patient in first remission. An autologous stem cell transplant or autologous stem cell transplant followed by non-ablative allogeneic stem cell transplant would be considered for someone who is older (but eligible for transplant).
After recovery from transplant, maintenance is typically applied. Revlimid at a minimum should be considered, although a multi-drug maintenance strategy (Revlimid, Velcade, +/- dex) should be considered. This aggressive, continuous approach to therapy is applied for the reasons alluded to by others in this post. It is not hard to get PCL in remission. It is hard to keep it there, though.
This is a fairly rare disease. As such, we do not have randomized or even large non-randomized studies to help guide us here. So therapy is driven by experience with more standard myeloma. We definitely need to learn more about the biology of this disease so that we can develop better, more targeted therapy for the future.
Take care and let us know how things go!
Pete V.
It sounds as though your mother's doctors are switching over to VDT-PACE chemotherapy, or something of that ilk. Is that the case? If it is, one reason for the change may be that they used CyBorD initially in its place due to kidney failure. Perhaps they wanted to get things under control and improve the kidney function prior to considering VDT-PACE (the P in VDT-PACE, or cisplatin, cannot be given in the setting of kidney failure).
Another reason for the change would be that the response was plateauing (the disease responded, but was not going into a deeper response), or the disease was showing signs of progression. I would clarify this with your mother's doctors.
Bortezomib-based induction therapy is definitely the way to go in the setting of plasma cell leukemia. VDT-PACE is commonly used, especially for younger patients. At 66, this could be challenging. CyBorD or RVD are very good options for those in whom VDT-PACE would be too toxic.
After initial disease control, a transplant approach is typically considered for those who are eligible for such an approach. A fully ablative allogeneic stem cell transplant would be considered for a younger patient in first remission. An autologous stem cell transplant or autologous stem cell transplant followed by non-ablative allogeneic stem cell transplant would be considered for someone who is older (but eligible for transplant).
After recovery from transplant, maintenance is typically applied. Revlimid at a minimum should be considered, although a multi-drug maintenance strategy (Revlimid, Velcade, +/- dex) should be considered. This aggressive, continuous approach to therapy is applied for the reasons alluded to by others in this post. It is not hard to get PCL in remission. It is hard to keep it there, though.
This is a fairly rare disease. As such, we do not have randomized or even large non-randomized studies to help guide us here. So therapy is driven by experience with more standard myeloma. We definitely need to learn more about the biology of this disease so that we can develop better, more targeted therapy for the future.
Take care and let us know how things go!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Questions about plasma cell leukemia
My mother was diagnosed with plasma cell leukemia in February 2012 at the age of 89 and after not having had any illnesses throughout her life. In fact, i don't remember her ever having even a cold!
She was not given a good prognosis at her advanced age, but she opted to try chemotherapy treatment (entirely her choice) and was told that it might give her another 18 months.
She survived 5 more months until July 2012. Apart from her last 3 weeks, she did well and had quite a few enjoyable days and moments. It was explained to us that PCL (especially at this age) was a bit like navigating ice in the springtime. You can be doing very well with walking on ice and then, at some point, you go crashing through.
We were grateful for the extra 5 months she had.
I wish each and every one of you the very best and hope that you and / or your relative who has been diagnosed are able to kick this and to live a long and happy life!
She was not given a good prognosis at her advanced age, but she opted to try chemotherapy treatment (entirely her choice) and was told that it might give her another 18 months.
She survived 5 more months until July 2012. Apart from her last 3 weeks, she did well and had quite a few enjoyable days and moments. It was explained to us that PCL (especially at this age) was a bit like navigating ice in the springtime. You can be doing very well with walking on ice and then, at some point, you go crashing through.
We were grateful for the extra 5 months she had.
I wish each and every one of you the very best and hope that you and / or your relative who has been diagnosed are able to kick this and to live a long and happy life!
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Pink016
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