Msmulberry -
You initially wrote asking about people's experience with plasma cell leukemia. I don't think you will find many people who can post with this direct experience. My experience from working in research in myeloma is that once myeloma converts to plasma cell leukemia, there is not much chance of the disease responding to any therapeutic modality. Probably the only option would be high-dose chemotherapy and transplant, possibly tandem. You are correct that the quality of life if you did this would be very questionable.
I think you are making the right decision. My best suggestion is to find a great palliative care physician that you trust, maybe from MD Anderson, since you were treated there, That can make a huge difference in the length and quality of the time you have remaining. Infection will be your greatest risk, so if you can stave off that with supportive care (appropriate antibiotics, transfusions etc)., you may have a fair amount of time even without the aggressive treatments.
I hope that you enjoy a peaceful time. Best Wishes.
Forums
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Tough Mom - Who do you know with myeloma?: myself
- When were you/they diagnosed?: January 2013
- Age at diagnosis: 45
Re: Plasma cell leukemia
Hello Msmulberry,
Thank you for writing with so much honesty. That can be really hard to do, especially when you do not personally know the recipients.
As a bereavement counsellor, I worked in a palliative ward in a hospital here in Australia. The care and even the word 'love' (an overused word most times) was palpable from ALL staff members. The management of patient needs with family needs was balanced well, so that the journey could be described as "a good death' most of the time, and patients never died alone as there was a team of volunteers to sit with patients in lieu of family members if needed.
Of course, it's never perfect, but I have already told my children what palliative care hospice / hospital I want for myself should it be timely.
Sincerely,
Shirley
Thank you for writing with so much honesty. That can be really hard to do, especially when you do not personally know the recipients.
As a bereavement counsellor, I worked in a palliative ward in a hospital here in Australia. The care and even the word 'love' (an overused word most times) was palpable from ALL staff members. The management of patient needs with family needs was balanced well, so that the journey could be described as "a good death' most of the time, and patients never died alone as there was a team of volunteers to sit with patients in lieu of family members if needed.
Of course, it's never perfect, but I have already told my children what palliative care hospice / hospital I want for myself should it be timely.
Sincerely,
Shirley
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sunnybrisbane - Name: Shirley R-M
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 70
Re: Plasma cell leukemia
Msmulberry,
I am so sorry to hear of your diagnosis. Your original post leads me to believe you are looking for some straightforward information from those who have experience with plasma cell leukemia. I would like to tell you about my husband. He passed away on July 26th from plasma cell leukemia (PCL).
In March 2014, my husband, 65 at the time, was diagnosed with multiple myeloma. He was having terrible back pain, collapsed at home, and was hospitalized. A plasmacytoma was found at T11 compressing his spinal cord. He became paralyzed from the legs down. He underwent radiation to reduce the tumor, and had four rounds of chemotherapy through the summer of 2014. His numbers looked good enough to have an autologous stem cell transplant (SCT) in October 2014.
Unfortunately, the SCT was not successful. He resumed chemotherapy immediately after the Day 100 assessment. His multiple myeloma had always been labeled as aggressive, so we were not surprised, but very disappointed. The SCT was a long road, complicated by his paraplegia.
In April 2015, he was hospitalized due to confusion and lethargy. His calcium level was elevated and his blood test showed the presence of plasma cells in the peripheral blood. We were given the news that his multiple myeloma had progressed to plasma cell leukemia, and were told the prognosis much as you described. With no treatment, weeks to perhaps a couple of months; aggressive treatment, which would require hospitalization with less than a 50% chance of success, maybe up to a year; or a middle course of palliative chemotherapy, maybe 4-6 months. A second SCT was not even considered or offered as an option.
My husband chose a moderate course of palliative chemotherapy. He was adamant that he did not want to spend any time in the hospital and his wish was to be at home at the end. A palliative care physician was added to his team of doctors. He no longer had the blood tests for the multiple myeloma markers, just a hemogram, manual differential, and the metabolic panel. His platelets dropped significantly, his ANC was more often than not zero, his hemoglobin hovered around 7. Over the course of 12 weeks, he had 18 platelet transfusions and 14 blood transfusions.
During this time, what I noticed was slightly more fatigue each week, but he would perk up after each blood transfusion. He managed to avoid any infections despite having basically no immune system, and his kidney and liver function remained healthy. He bruised easily, and had more nosebleeds, due to the low platelets. He maintained his daily routines, which included twice weekly physical therapy and doing most of the cooking, his favorite hobby.
Two months after the diagnosis of plasma cell leukemia, the number of plasma cells reported on the differential began to rise. By mid July, the number was doubling every four days. This rapid increase was a sign the disease had taken control and his time was limited. He switched to hospice care. He had a transfusion of platelets and blood on July 20th. The next morning, he was very tired and weak, and stayed in bed. Each successive day he slept more and ate less; the hospice nurse came every day. He was able to communicate with all the family and friends who came to say good bye. My fears and anxieties over what I was supposed to do were replaced by calm and peace and being at my husband's side. Only the the very last day was he unresponsive. He was not in pain, and he died peacefully, at home, as was his wish on July 26th.
We started asking about hospice care soon after the plasma cell leukemia diagnosis. There was some initial confusion over whether my husband could continue his palliative chemotherapy and receive blood transfusions while on hospice. I was given conflicting information from the palliative care team, my husbands' oncologist, and even the hospice provider. Some said he could not be receiving any chemotherapy, others said no transfusions.
We finally were assigned a hospice nurse, who took my husband's case to the medical director of the hospice program. The director approved both the continuation of his palliative chemotherapy and transfusions as needed. If he had decided to try a different chemo drug, he would have had to go off hospice, as that would have been considered seeking treatment for the plasma cell leukemia. So everything was in place when we needed to make the switch.
His quality of life remained good up until the end. The extreme fatigue, loss of appetite, the slowing of his mental functions, only appeared the last 4-5 days. Prior to that, we made many happy memories – renewing our vows of our 42 years of marriage, going for a hot air balloon ride over his beloved Green Mountains, and scheduling as many visits as possible with our children, their spouses, and our two grandchildren. He died just three months after the diagnosis of plasma cell leukemia.
When my husband was diagnosed with PCL I desperately searched for information about how the disease would progress, about how the disease would end his life. That kind of information was scarce. His doctors were caring and compassion, and did their very best to support my husband's quality of life and his goals for his end of life.
My prayers, Msmulberry.
Naym
I am so sorry to hear of your diagnosis. Your original post leads me to believe you are looking for some straightforward information from those who have experience with plasma cell leukemia. I would like to tell you about my husband. He passed away on July 26th from plasma cell leukemia (PCL).
In March 2014, my husband, 65 at the time, was diagnosed with multiple myeloma. He was having terrible back pain, collapsed at home, and was hospitalized. A plasmacytoma was found at T11 compressing his spinal cord. He became paralyzed from the legs down. He underwent radiation to reduce the tumor, and had four rounds of chemotherapy through the summer of 2014. His numbers looked good enough to have an autologous stem cell transplant (SCT) in October 2014.
Unfortunately, the SCT was not successful. He resumed chemotherapy immediately after the Day 100 assessment. His multiple myeloma had always been labeled as aggressive, so we were not surprised, but very disappointed. The SCT was a long road, complicated by his paraplegia.
In April 2015, he was hospitalized due to confusion and lethargy. His calcium level was elevated and his blood test showed the presence of plasma cells in the peripheral blood. We were given the news that his multiple myeloma had progressed to plasma cell leukemia, and were told the prognosis much as you described. With no treatment, weeks to perhaps a couple of months; aggressive treatment, which would require hospitalization with less than a 50% chance of success, maybe up to a year; or a middle course of palliative chemotherapy, maybe 4-6 months. A second SCT was not even considered or offered as an option.
My husband chose a moderate course of palliative chemotherapy. He was adamant that he did not want to spend any time in the hospital and his wish was to be at home at the end. A palliative care physician was added to his team of doctors. He no longer had the blood tests for the multiple myeloma markers, just a hemogram, manual differential, and the metabolic panel. His platelets dropped significantly, his ANC was more often than not zero, his hemoglobin hovered around 7. Over the course of 12 weeks, he had 18 platelet transfusions and 14 blood transfusions.
During this time, what I noticed was slightly more fatigue each week, but he would perk up after each blood transfusion. He managed to avoid any infections despite having basically no immune system, and his kidney and liver function remained healthy. He bruised easily, and had more nosebleeds, due to the low platelets. He maintained his daily routines, which included twice weekly physical therapy and doing most of the cooking, his favorite hobby.
Two months after the diagnosis of plasma cell leukemia, the number of plasma cells reported on the differential began to rise. By mid July, the number was doubling every four days. This rapid increase was a sign the disease had taken control and his time was limited. He switched to hospice care. He had a transfusion of platelets and blood on July 20th. The next morning, he was very tired and weak, and stayed in bed. Each successive day he slept more and ate less; the hospice nurse came every day. He was able to communicate with all the family and friends who came to say good bye. My fears and anxieties over what I was supposed to do were replaced by calm and peace and being at my husband's side. Only the the very last day was he unresponsive. He was not in pain, and he died peacefully, at home, as was his wish on July 26th.
We started asking about hospice care soon after the plasma cell leukemia diagnosis. There was some initial confusion over whether my husband could continue his palliative chemotherapy and receive blood transfusions while on hospice. I was given conflicting information from the palliative care team, my husbands' oncologist, and even the hospice provider. Some said he could not be receiving any chemotherapy, others said no transfusions.
We finally were assigned a hospice nurse, who took my husband's case to the medical director of the hospice program. The director approved both the continuation of his palliative chemotherapy and transfusions as needed. If he had decided to try a different chemo drug, he would have had to go off hospice, as that would have been considered seeking treatment for the plasma cell leukemia. So everything was in place when we needed to make the switch.
His quality of life remained good up until the end. The extreme fatigue, loss of appetite, the slowing of his mental functions, only appeared the last 4-5 days. Prior to that, we made many happy memories – renewing our vows of our 42 years of marriage, going for a hot air balloon ride over his beloved Green Mountains, and scheduling as many visits as possible with our children, their spouses, and our two grandchildren. He died just three months after the diagnosis of plasma cell leukemia.
When my husband was diagnosed with PCL I desperately searched for information about how the disease would progress, about how the disease would end his life. That kind of information was scarce. His doctors were caring and compassion, and did their very best to support my husband's quality of life and his goals for his end of life.
My prayers, Msmulberry.
Naym
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Naym - Name: Naym
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 65
Re: Plasma cell leukemia
Naym:
I want to thank you from the bottom of my heart for your post. My husband is now on hospice and they have been like angels from heaven. To hear your description of your husband's last days was very comforting to me and also how you helped him. The peace you describe is what I feel now.
Thank you for taking the time to post, and God bless you.
I want to thank you from the bottom of my heart for your post. My husband is now on hospice and they have been like angels from heaven. To hear your description of your husband's last days was very comforting to me and also how you helped him. The peace you describe is what I feel now.
Thank you for taking the time to post, and God bless you.
-
RoadSaylor
Re: Plasma cell leukemia
Naym,
Thank you so much for your post. It was so helpful and told me what I was asking for. I am so grateful to you for sharing your experience, especially the part about hospice and platelets and transfusions.
Thank you so much for your post. It was so helpful and told me what I was asking for. I am so grateful to you for sharing your experience, especially the part about hospice and platelets and transfusions.
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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
My husband passed away from multiple myeloma / plasma cell leukemia 2 weeks ago today. He was diagnosed with multiple myeloma in November 2014. We were on our 4th round of different chemo combos as the 3 others including a clinical trial had stopped working. The strong chemo caused him so many problems from heart issues etc.
He was in hospital for the last week of his life to try and get hip / femur pain under control and pneumonia. We were told three days before he passed that he has PCL; 35% was in his blood but as always we had hope as he was going to try a new combo of drugs with Darzalex on the Wednesday.
I kept asking different doctors why he seemed so confused and he would hallucinate and get paranoid, sleeping a lot too. They all kept saying "oh it's the pain meds doing that." I knew in my heart something wasn't right. He was released from hospital on the Monday afternoon, and when I put him to bed that night, he never woke up or responded. I called palliative care as I was not going to send him back to that hospital and when she came she said he is in end of life. I was devastated. He went in to hospice and they were wonderful.
He passed on the Wednesday morning aged 56 very very peacefully of which I am grateful. I only wish I had known he had a few days as we could have said our goodbyes. I cannot help but wonder surely the hospital must have known he only had days, why didn't they say something.
I have found that with PCL some people can survive with an SCT as a lady contacted me and her husband is in remission two years later so for some there is still hope. I miss my hero so so much but know that he is no longer in pain.
Good luck to all you warriors out there.
He was in hospital for the last week of his life to try and get hip / femur pain under control and pneumonia. We were told three days before he passed that he has PCL; 35% was in his blood but as always we had hope as he was going to try a new combo of drugs with Darzalex on the Wednesday.
I kept asking different doctors why he seemed so confused and he would hallucinate and get paranoid, sleeping a lot too. They all kept saying "oh it's the pain meds doing that." I knew in my heart something wasn't right. He was released from hospital on the Monday afternoon, and when I put him to bed that night, he never woke up or responded. I called palliative care as I was not going to send him back to that hospital and when she came she said he is in end of life. I was devastated. He went in to hospice and they were wonderful.
He passed on the Wednesday morning aged 56 very very peacefully of which I am grateful. I only wish I had known he had a few days as we could have said our goodbyes. I cannot help but wonder surely the hospital must have known he only had days, why didn't they say something.
I have found that with PCL some people can survive with an SCT as a lady contacted me and her husband is in remission two years later so for some there is still hope. I miss my hero so so much but know that he is no longer in pain.
Good luck to all you warriors out there.
Re: Plasma cell leukemia
I am so very sorry for your loss, Chelseagal. It hurts deeply when someone so close to us passes, but the hurt is even deeper when you feel like you didn't have a chance to say your good byes.
Thank you for sharing with us what happened. I know it must have been painful to put in writing everything that happened, but what you wrote will help many people. I appreciate your taking the time to write us about what happened.
I wish you and your family all the best, and hope you find the love and support that you deserve.
Thank you for sharing with us what happened. I know it must have been painful to put in writing everything that happened, but what you wrote will help many people. I appreciate your taking the time to write us about what happened.
I wish you and your family all the best, and hope you find the love and support that you deserve.
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