I saw my oncologist yesterday and was told that ,in addition to my markers all going the wrong way, they had now discovered "rare" circulating plasma cells in my blood, which was very suggestive of the multiple myeloma evolving into plasma cell leukemia. I have been very out of breath and fatigued. She said this rare leukemia is very aggressive and I might have as little as 2 months, but maybe up to 7, and suggested I start looking into palliative care and hospice.
I am ok with this, have never been the fight-at-all-cost kind of person, and have no intention of more treatment. But I would like any information about and/ or experiences with plasma cell leukemia.
I was diagnosed with smoldering myeloma in 2010 at same time as breast cancer when I was 67. After heavy chemo, surgery, and radiation, I had complete remission of the breast cancer. The smoldering myeloma was knocked down but, in 2012, I had an auto stem cell transplant (SCT) and achieved complete remission and was on maintenance Revlimid, Velcade, and dex (RVD).
I relapsed in about 12 months. Then put on various other therapies, which would work for a while, but then I would relapse. I have never had bone lesions or kidney problems. I have been slightly anemic. Bone marrow biopsy and lab results would show high levels of myeloma markers. I never felt the effects of the multiple myeloma, but the treatment wore me down. After 3 years of continuous maintenance, I decided to stop treatment (Kyprolis and dex) in June.
Forums
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Msmulberry - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 67
Re: Plasma cell leukemia
MsMulberry-
You certainly have had your plate full in the last few years with your multiple cancer diagnoses. I'm sorry to hear that you now are developing plasma cell leukemia. My first question to you is: Are you being seen by a myeloma specialist? If not, please consider doing so. The other is: Have you considered going for a second opinion from another myeloma specialist? That's something that you might do before going the palliative care / hospice route.
If you are ok with facing the end of your life with this new diagnosis and not going with further treatment, then I wholeheartedly recommend palliative care / hospice. I have used their services with my husband and with my stepfather, and was so happy with the care that they got as they reached the end of their life with cancer and lots of pain prior to hospice care.
There is at least one person, a nurse, who has posted on here in the last year who also had a diagnosis of plasma cell leukemia with her myeloma. She hasn't posted in a while. She was in the process of getting ready for an allo transplant using stem cells from the umbilical cord of a newborn. She was unable to find a match, or near match, for a regular allo transplant. She hasn't posted in several months, so I don't know how her transplant went nor how she is doing.
I wish you well in making the hard decisions that you are faced with now. You will make the decision that is right for you.
Much love,
Nancy in Phila
You certainly have had your plate full in the last few years with your multiple cancer diagnoses. I'm sorry to hear that you now are developing plasma cell leukemia. My first question to you is: Are you being seen by a myeloma specialist? If not, please consider doing so. The other is: Have you considered going for a second opinion from another myeloma specialist? That's something that you might do before going the palliative care / hospice route.
If you are ok with facing the end of your life with this new diagnosis and not going with further treatment, then I wholeheartedly recommend palliative care / hospice. I have used their services with my husband and with my stepfather, and was so happy with the care that they got as they reached the end of their life with cancer and lots of pain prior to hospice care.
There is at least one person, a nurse, who has posted on here in the last year who also had a diagnosis of plasma cell leukemia with her myeloma. She hasn't posted in a while. She was in the process of getting ready for an allo transplant using stem cells from the umbilical cord of a newborn. She was unable to find a match, or near match, for a regular allo transplant. She hasn't posted in several months, so I don't know how her transplant went nor how she is doing.
I wish you well in making the hard decisions that you are faced with now. You will make the decision that is right for you.
Much love,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Plasma cell leukemia
Hi MsMulberry,
Sorry to hear about this situation. I echo Nancy's comments.
Finding monoclonal plasma cells in the peripheral blood of a multiple myeloma patient is not that uncommon. But monoclonal plasma cells due to PCL are a bit different than those found in the peripheral blood of multiple myeloma patients. Did they run a flow cytometry analysis on your blood to help determine that these were likely plasma cells associated with PCL?
Obviously, your doc's comments are worrisome. So, like Nancy mentioned, I might also suggest getting a second opinion from a top myeloma specialist regarding your doc's comments and findings.
Sorry to hear about this situation. I echo Nancy's comments.
Finding monoclonal plasma cells in the peripheral blood of a multiple myeloma patient is not that uncommon. But monoclonal plasma cells due to PCL are a bit different than those found in the peripheral blood of multiple myeloma patients. Did they run a flow cytometry analysis on your blood to help determine that these were likely plasma cells associated with PCL?
Obviously, your doc's comments are worrisome. So, like Nancy mentioned, I might also suggest getting a second opinion from a top myeloma specialist regarding your doc's comments and findings.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Plasma cell leukemia
Dear Nancy and Multibilly,
Thank you for your support and suggestions. I was treated for several years at Little Rock and then M.D. Anderson. I was told I have high risk, clinically aggressive myeloma and I had already made the decision and had stopped treatment when my oncologist found the PCL.
I have no desire to continue treatment. I've had 5 years of continuous chemo, surgeries radiation, and almost all the myeloma treatments without break. I'm tired of it. I see no future without treatment, and quality of life is much more important than quantity.
I don't understand people who want to fight the disease and hang on no matter what. I'm pretty sure they don't get me either. I've had a great life, done most the things I want, and have no bucket list.
I guess I was just asking for information and what to expect. I find medicine fascinating and always want to know what's going on. It has been extremely interesting learning about multiple myeloma and the treatments and procedures.
So thanks again, I wish you well.
Thank you for your support and suggestions. I was treated for several years at Little Rock and then M.D. Anderson. I was told I have high risk, clinically aggressive myeloma and I had already made the decision and had stopped treatment when my oncologist found the PCL.
I have no desire to continue treatment. I've had 5 years of continuous chemo, surgeries radiation, and almost all the myeloma treatments without break. I'm tired of it. I see no future without treatment, and quality of life is much more important than quantity.
I don't understand people who want to fight the disease and hang on no matter what. I'm pretty sure they don't get me either. I've had a great life, done most the things I want, and have no bucket list.
I guess I was just asking for information and what to expect. I find medicine fascinating and always want to know what's going on. It has been extremely interesting learning about multiple myeloma and the treatments and procedures.
So thanks again, I wish you well.
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Msmulberry - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 67
Re: Plasma cell leukemia
Dear Msmullberry
I want to give you my whole support for your decision on stopping treatment, after you have consulted with the top specialists about prognosis. I fully identify with making this decision since we know for most of us it is only a matter of time.
Like you I find that 'hope' is the mindset of many with multiple myeloma, I suspect because many who post here are much younger than the 'average' multiple myeloma patient and this disease is not always easy to treat and requires continuous treatment which will affect out quality of life. Young people have not 'lived a life' like us slightly older people, so the hope for a cure, or long remissions with new / agressive treatments is often expressed and endured.
In the end it boils own to individual choice and acceptance of life and death as part of life at any age. Children are dying all over the world, not just older people with cancers, of preventable diseases, they never had a chance. I cannot say that for myself.
I do understand your decision.
I want to give you my whole support for your decision on stopping treatment, after you have consulted with the top specialists about prognosis. I fully identify with making this decision since we know for most of us it is only a matter of time.
Like you I find that 'hope' is the mindset of many with multiple myeloma, I suspect because many who post here are much younger than the 'average' multiple myeloma patient and this disease is not always easy to treat and requires continuous treatment which will affect out quality of life. Young people have not 'lived a life' like us slightly older people, so the hope for a cure, or long remissions with new / agressive treatments is often expressed and endured.
In the end it boils own to individual choice and acceptance of life and death as part of life at any age. Children are dying all over the world, not just older people with cancers, of preventable diseases, they never had a chance. I cannot say that for myself.
I do understand your decision.
Re: Plasma cell leukemia
Thanks Edna. I know it's much easier for us older ones. If I were younger or had young children, it would be a different story I'm sure. I'm quite content to relax and see what this next adventure will be.
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Msmulberry - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 67
Re: Plasma cell leukemia
Msmulberry-
I hope that you didn't get the idea that I was against your decision not to pursue any more treatment. No one has the privilege of making that kind of decision for another person. I was just suggesting that, if you hadn't been diagnosed by a specialist, that that would be an option to pursue before deciding to not have further treatment.
I fully believe, and hope that I will be able to follow my belief, that there is a time to stop treatment and accept that life is coming to an end point. I personally do not want to be one of those people who pursue medical intervention when it is no longer providing me with a life that I can enjoy. So, I wish you well on the path that you are choosing and that you have a number of good days and experiences in the time that remains. Hospice will help you to achieve that goal with as little discomfort as possible.
Much love to you,
Nancy in Phila
I hope that you didn't get the idea that I was against your decision not to pursue any more treatment. No one has the privilege of making that kind of decision for another person. I was just suggesting that, if you hadn't been diagnosed by a specialist, that that would be an option to pursue before deciding to not have further treatment.
I fully believe, and hope that I will be able to follow my belief, that there is a time to stop treatment and accept that life is coming to an end point. I personally do not want to be one of those people who pursue medical intervention when it is no longer providing me with a life that I can enjoy. So, I wish you well on the path that you are choosing and that you have a number of good days and experiences in the time that remains. Hospice will help you to achieve that goal with as little discomfort as possible.
Much love to you,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Plasma cell leukemia
Nancy,
I'm afraid I overreacted to the mention of "second opinion". I'm so tired of traveling to specialists. Thank you for your kind and wise words.
I'm afraid I overreacted to the mention of "second opinion". I'm so tired of traveling to specialists. Thank you for your kind and wise words.
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Msmulberry - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 67
Re: Plasma cell leukemia
Msmulberry -
Wishing you the best possible quality of life in the time that is left.
Enjoy your time off all these invasive therapies.
Alternative medicine may be able to offer some non-toxic approaches for moderate improvement of quality of life.
Wishing you all the best,
RT
Wishing you the best possible quality of life in the time that is left.
Enjoy your time off all these invasive therapies.
Alternative medicine may be able to offer some non-toxic approaches for moderate improvement of quality of life.
Wishing you all the best,
RT
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RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Plasma cell leukemia
First, 67 is hardly old!
I do not think I would make the same decision as you have, but after what you have been through, maybe I would.
I understand fully your remark that quality of life matters to you more than quantity.
This is one of the kind of posts that I hate to see here, where it is front and center that an untimely end is inevitable.
I do not think I would make the same decision as you have, but after what you have been through, maybe I would.
I understand fully your remark that quality of life matters to you more than quantity.
This is one of the kind of posts that I hate to see here, where it is front and center that an untimely end is inevitable.
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tmcd - Name: TMcD
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 52
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