My mother was rushed by ambulance a week ago yesterday and after they were unable to stabilize her in the ER, they put her in the ICU. She had 2 spells of unresponsiveness @ her cardiologist's office (went there to be cleared for kypoplasty to repair her compression fractures in her spine due to the multiple myeloma). She was in septic shock, severely dehydrated (from the recurrent c. diff). She was doing great and had two semi-icky feeling days (we contributed it to the multiple myeloma treatments). The doctors, nurses, and specialists are doing everything they can to save her.
Her oncologist's office suggested IVIG treatment to help with the infection. They explained that IgA lambda multiple myeloma patients often times have low IgG levels and she does (at last check), so I asked about it, as her oncologist is from a different health system and doesn't have privileges, but the cancer center, Roswell Park, does have a liaison that is able to pull records and communicate Roswell's suggestions. So, this person suggested the IVIG, and so did I to a few of the docs and nurses, and yesterday they drew her IgG level and sent it to the lab. Also, in attempt to save her, they pumped her full of fluids (and she is on dialysis due to the multiple myeloma, but not stable enough to take too much fluid off now at each dialysis session). She is now so extremely fluid overloaded that they are worried about her heart going into atrial fibrillation, etc.
If anyone has experience w/ IVIG or any other suggestions, I would greatly appreciate it. Thank you.
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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: Mom in ICU, fighting for her life
Dear veganmartin,
I am so sorry to hear that your mother has to go through this. IVIG is most helpful as a way of preventing infections. How it performs in the setting of an active infection leading to critical illness is less clear. I do think that it is very reasonable to consider, though. Appropriate antibiotic therapy and supportive care in the ICU will be of the utmost importance. If the C. Diff is refractory to antibiotic therapy, fecal transplants are being done more often now as a way of restoring normal gut flora, making it harder for C. Diff to thrive.
Best of luck and hang in there!
Pete V.
I am so sorry to hear that your mother has to go through this. IVIG is most helpful as a way of preventing infections. How it performs in the setting of an active infection leading to critical illness is less clear. I do think that it is very reasonable to consider, though. Appropriate antibiotic therapy and supportive care in the ICU will be of the utmost importance. If the C. Diff is refractory to antibiotic therapy, fecal transplants are being done more often now as a way of restoring normal gut flora, making it harder for C. Diff to thrive.
Best of luck and hang in there!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Mom in ICU, fighting for her life
Thank you, Dr. Mom had a fecal transplant in mid-April and it took about 2 weeks to grow the "good bacteria" and we think it may have been a success. She spent a total of 4 weeks in the ICU and another 2 weeks on the floor, then to rehab for 2 weeks. She just got out today. Our plan is now to get her into a infectious disease specialist at the oncology hospital she goes for treatment. Her appointment is in 2 weeks. I will ask about IVIG (they opted for the transplant vs. the IVIG b/c they were afraid of anaphylaxis). She goes for labs with her oncologist on Monday, and then he sees her in 3 weeks. I'm worried about what he will tell us. On the discharge paperwork today I saw under the list of diagnoses: plasma cell leukemia (along with adrenal insufficiency, but I assumed that her adrenal glands would "come back" - she was in septic shock when she came into the hospital and i know what a burden that is on the body). No one has mentioned that and I am slightly aware of what it is and I'm very worried. She's been vomiting every day in rehab and no one is able to tell us why. We thought maybe nerves? She's on anti-depresents and anti-anxiety meds and pain killers. She is still on dialysis 3x/week.
Anyone out there have any knowledge of plasma cell leukemia? Pretty crappy way to find out - reading it on discharge paperwork...
Anyone out there have any knowledge of plasma cell leukemia? Pretty crappy way to find out - reading it on discharge paperwork...
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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: Mom in ICU, fighting for her life
I hope she gets well soon.
I believe plasma cell leukimia is just another jargon for multiple myeloma.
I believe plasma cell leukimia is just another jargon for multiple myeloma.
Re: Mom in ICU, fighting for her life
Thank you. She has been in and out of hospitals since her diagnosis in September 2012. She's only been home in between a total of maybe 12 weeks or so. No one way live...
I thought PCL it was the terminal/end phase of multiple myeloma, which would seem so odd to me that she developed that so quickly, she did so awesome on her first round of treatment @ Roswell and they were thinking she would be having a SCT in 3-4 months.
I thought PCL it was the terminal/end phase of multiple myeloma, which would seem so odd to me that she developed that so quickly, she did so awesome on her first round of treatment @ Roswell and they were thinking she would be having a SCT in 3-4 months.
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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: Mom in ICU, fighting for her life
Plasma cell leukemia can evolve from multiple myeloma, but it is not the same as multiple myeloma, nor (as far as I know) do all cases of myeloma eventually evolve into plasma cell leukemia.
It's also possible to have plasma cell leukemia without having multiple myeloma.
Like multiple myeloma, plasma cell leukemia is a disorder involving the plasma cells.
In multiple myeloma, abnormal plasma cells accumulate in the bone marrow, disrupting the production of other blood cells.
In plasma cell leukemia, plasma cells become an abnormally high share of the cells in the blood.
In fact, the definition of plasma cell leukemia is that more than 20 percent of the white cells in the blood are plasma cells, or that the absolute plasma cell count in the blood is more than 2 billion (10^9) per liter.
Plasma cell leukemia evolving from multiple myeloma is definitely an aggressive disease and therefore needs to be treated aggressively.
This recent article by leading specialists at Dana-Farber in Boston and Utrecht in the Netherlands discusses plasma cell leukemia, but it's quite technical:
http://bloodjournal.hematologylibrary.org/content/120/12/2376.full
However, if you go to this section of the article,
http://bloodjournal.hematologylibrary.org/content/120/12/2376.full#sec-28
you'll find recommendations for the treatment of "secondary" plasma cell leukemia -- that is, plasma cell leukemia that develops in patients who initially have multiple myeloma.
Best of luck to your mom, Kristen. She's facing a tough situation, for sure, but hopefully you and your family will be able to work with her doctors to come up with a good way to help her.
It's also possible to have plasma cell leukemia without having multiple myeloma.
Like multiple myeloma, plasma cell leukemia is a disorder involving the plasma cells.
In multiple myeloma, abnormal plasma cells accumulate in the bone marrow, disrupting the production of other blood cells.
In plasma cell leukemia, plasma cells become an abnormally high share of the cells in the blood.
In fact, the definition of plasma cell leukemia is that more than 20 percent of the white cells in the blood are plasma cells, or that the absolute plasma cell count in the blood is more than 2 billion (10^9) per liter.
Plasma cell leukemia evolving from multiple myeloma is definitely an aggressive disease and therefore needs to be treated aggressively.
This recent article by leading specialists at Dana-Farber in Boston and Utrecht in the Netherlands discusses plasma cell leukemia, but it's quite technical:
http://bloodjournal.hematologylibrary.org/content/120/12/2376.full
However, if you go to this section of the article,
http://bloodjournal.hematologylibrary.org/content/120/12/2376.full#sec-28
you'll find recommendations for the treatment of "secondary" plasma cell leukemia -- that is, plasma cell leukemia that develops in patients who initially have multiple myeloma.
Best of luck to your mom, Kristen. She's facing a tough situation, for sure, but hopefully you and your family will be able to work with her doctors to come up with a good way to help her.
Re: Mom in ICU, fighting for her life
Thank you so much for the article link. Very technical indeed but I was able to grasp a good amount of info. Would it be possible that she has primary PCL and was misdiagnosed as having multiple myeloma? I will be calling her oncologist on Monday to find out the details - who made this diagnosis and when (obviously it was during this last hospitalization, but he didn't see her - the hospital system she was at isn't affiliated with Roswell Park Cancer Institute, but I am 99% sure an oncologist/hematologist did see her early in her stay while in the ICU, as I wanted to make sure someone w/ a cancer background was in on the case. Her appointment w/ her onc isn't until 6/27 (she goes 6/10 for lab work), but I can't wait that long...
Just need to have some questions lined up for when I call her onc office on Monday morning....
Thank you!
Just need to have some questions lined up for when I call her onc office on Monday morning....
Thank you!
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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
7 posts
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