My wife's multiple myeloma recently "transformed" into plasma cell leukemia. Evidently this is a rare, but not unknown occurence. She is now on track to receive an allo transplant soon. She did have an auto transplant in October, 2011 which only achieved a few months of remission. Recently she has been on a Velcade, Cytoxan, dex regimen which seemed to be keeping the multiple myeloma at bay. Until now.
We would appreciate any information or experience that forum members might have with PCL as well as any tips on an allo transplant. Thank you for your help. I have learned alot reading this forum for the last couple of years.
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7 posts
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mwRob - Who do you know with myeloma?: wife
- When were you/they diagnosed?: April 2011
- Age at diagnosis: 52
Re: Plasma cell leukemia & allo transplant info
Hi there. How did this go? How is your wife doing? I just found out today (per my mother's discharge paperwork from the rehab facility - no one told us while she was in the hospital for 2 months) that her multiple myeloma has transformed into this as well...
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Plasma cell leukemia & allo transplant info
Hello veganmartin! I just checked this forum after being away for awhile. I got no replies on this subject for so long that I stopped checking.
My wife received an allogeneic transplant in early April after a couple rounds of chemo. Her brother was the donor and she did quite well. She was discharged from the hospital in three weeks and the follow up blood work was all rebounding nicely.
We are about 80 days post transplant now. She has had some odd painful swollen gums for a week or two and we were hoping it was some graft vs. host response or a drug side effect. Unfortunately, blood tests yesterday showed a high level of plasma cells in the blood. Two weeks ago the count was zero. Very discouraging and I dont know what is next. We are waiting for results from a bone marrow biopsy.
My wife received an allogeneic transplant in early April after a couple rounds of chemo. Her brother was the donor and she did quite well. She was discharged from the hospital in three weeks and the follow up blood work was all rebounding nicely.
We are about 80 days post transplant now. She has had some odd painful swollen gums for a week or two and we were hoping it was some graft vs. host response or a drug side effect. Unfortunately, blood tests yesterday showed a high level of plasma cells in the blood. Two weeks ago the count was zero. Very discouraging and I dont know what is next. We are waiting for results from a bone marrow biopsy.
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mwRob - Who do you know with myeloma?: wife
- When were you/they diagnosed?: April 2011
- Age at diagnosis: 52
Re: Plasma cell leukemia & allo transplant info
Hi there. I am sorry you're still dealing w/ all of this. This disease is so complicated and frustrating! After weeks of worry, we were told by the PA at her oncologists office that they don't see any circulating plasma cells and they believe that the plasma cell leukemia was a coding error. I wish you and your wife the best and will keep her in my prayers. Take care.
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Plasma cell leukemia & allo transplant info
Hi,
I know it has been awhile since these posts but I would be interested in hearing how your wife and mom are doing and if treatment worked for them. My mom was also diagnosed with seconday plasma cell leukemia after an initial diagnosis of myeloma. She was diagnosed about 1 1/2 months ago and is on bendamustine.
I know it has been awhile since these posts but I would be interested in hearing how your wife and mom are doing and if treatment worked for them. My mom was also diagnosed with seconday plasma cell leukemia after an initial diagnosis of myeloma. She was diagnosed about 1 1/2 months ago and is on bendamustine.
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Anonymous
Re: Plasma cell leukemia & allo transplant info
I'm sorry to report that my wife passed away on Sept. 28, 2013. She had just received the news that she would undergo a second allo SCT. Before the process could start for the transplant, she had a brain hemorrhage that was not controllable given her low platelets and very high plasma cells. She received very good, compassionate care for the last few days.
The only good news was that she was very active literally up to the last hospital admission, even playing tennis.
I wish I had better news to report. I still occasionally check this website to see if there are any new developments with this set of diseases we are all too familiar with.
Best wishes in you own personal journeys.
The only good news was that she was very active literally up to the last hospital admission, even playing tennis.
I wish I had better news to report. I still occasionally check this website to see if there are any new developments with this set of diseases we are all too familiar with.
Best wishes in you own personal journeys.
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mwRob - Who do you know with myeloma?: wife
- When were you/they diagnosed?: April 2011
- Age at diagnosis: 52
Re: Plasma cell leukemia & allo transplant info
It must have been very difficult for you to write this. I know it is difficult for me to read news like this. Thank your for keeping us up to date with what has been happening with your wife’s battle with her cancer.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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