Shavik --
I am so sorry for your father's passing.
Dana A
Forums
-
darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: What do people with multiple myeloma die from?
Sandy -
I am so sorry for your loss.
Thanks to you and Shavik for sharing what must be very difficult memories for both of you. Like Mike B. it was hard for me to read and know what I -- and my darling daughter -- could be facing in the future. Still, knowing can better prepare you to play that hand when it is dealt to you.
Dana A
I am so sorry for your loss.
Thanks to you and Shavik for sharing what must be very difficult memories for both of you. Like Mike B. it was hard for me to read and know what I -- and my darling daughter -- could be facing in the future. Still, knowing can better prepare you to play that hand when it is dealt to you.
Dana A
-
darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: What do people with multiple myeloma die from?
WARNING: Morbid material below.
Last spring, when I couldn't sleep due to the dex I was taking, my almost-sleeping mind made a list of ten ways myeloma could kill:
Last spring, when I couldn't sleep due to the dex I was taking, my almost-sleeping mind made a list of ten ways myeloma could kill:
- Impaired white cell production weakens the immune system, and you die from pneumonia, diarrhea, fever or C. diff. Leukemia patients face this outcome, too.
- Impaired red cell production leads to anemia. If bad enough, your heart is starved for oxygen and stops.
- Impaired platelet production puts you at greater risk for internal bleeding or hemorrhagic stroke.
- Free light chain secretions cause light chain deposition disease (LCDD), which gradually takes out your kidney function.
- M-protein secretions make your blood sludgy, increasing the risk of heart attack.
- Bone lesions cause fractures that impinge on vital organs, blood vessels or nerves, causing organ failure. Lesions also lead to high calcium in the blood, which is bad for your kidneys.
- Broken ribs make you bed-ridden, and pneumonia sets in.
- Plasmacytomas (tumors) appear in the chest, neck or skull, with possibly lethal results.
- Plasma cells in the chest cause pulmonary effusion, where you chest fills with fluid that squashes your lungs.
- Iatrogenic mortality, that is, death from the treatments you've had. That could take the form of heart trouble, delayed secondary cancers, or myelodysplasia.
-
Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: What do people with multiple myeloma die from?
The Emedicine website (a peer-reviewed scholarly website used by health care professionals) lists bacterial infection as the most common cause of death, but we know that there are a lot of steps leading up to this - basically all the stuff that suppresses the immune system:
A 44-year old friend of mine died two weeks ago from metastatic lung cancer, leaving behind her husband to raise their 4-year old as a single parent. She was a tech in the ER where I work, and the ER staff banded together to support her. I went to many appointments with her, basically to act as interpreter. She didn't want to know anything. She became angry at anyone who suggested she might die from it, and repeatedly refused to listen to anything about what the end might be like or what her prognosis was.
My perception is that this approach interfered with adequate end-of-life planning, but it certainly wasn't for lack of opportunity, and that's the way she wanted it. I suspect that, in her heart of hearts, she knew she had a dismal prognosis (18 months), but not hearing the details about it and not focusing on it allowed her to continue to enjoy what time she had left with her family, instead of ruminating and obsessing about numbers.
I am exactly the opposite - I want to know everything, even though I will then ruminate about it all. It's just how I am. I am also cursed with the doctor problem of knowing too much. So that moment when I was told I had myeloma, all the type of information in this thread was already in my head on a professional level, and came crashing down on me on a personal level. It was very heavy at that point, I can tell you. This was accompanied by scenes and images from all the unlucky patients I've taken care of over the years, in all their gory, tragic details. Being an ER doctor does not help me cope emotionally, in fact, it gets in my way.
I've seen a lot of people die over the years, and I can tell you that there are good ways to die and bad ways to die, unequivocally. Let's all hope that when the end comes, no matter how or where or when, we die in one of the good ways.
- Infiltration of the marrow by abnormal plasma cells, crowding out regular immune cells chemotherapy
- General debility - i.e. lying in bed because of pain/ fractures and getting bacterial pneumonia kidney failure
A 44-year old friend of mine died two weeks ago from metastatic lung cancer, leaving behind her husband to raise their 4-year old as a single parent. She was a tech in the ER where I work, and the ER staff banded together to support her. I went to many appointments with her, basically to act as interpreter. She didn't want to know anything. She became angry at anyone who suggested she might die from it, and repeatedly refused to listen to anything about what the end might be like or what her prognosis was.
My perception is that this approach interfered with adequate end-of-life planning, but it certainly wasn't for lack of opportunity, and that's the way she wanted it. I suspect that, in her heart of hearts, she knew she had a dismal prognosis (18 months), but not hearing the details about it and not focusing on it allowed her to continue to enjoy what time she had left with her family, instead of ruminating and obsessing about numbers.
I am exactly the opposite - I want to know everything, even though I will then ruminate about it all. It's just how I am. I am also cursed with the doctor problem of knowing too much. So that moment when I was told I had myeloma, all the type of information in this thread was already in my head on a professional level, and came crashing down on me on a personal level. It was very heavy at that point, I can tell you. This was accompanied by scenes and images from all the unlucky patients I've taken care of over the years, in all their gory, tragic details. Being an ER doctor does not help me cope emotionally, in fact, it gets in my way.
I've seen a lot of people die over the years, and I can tell you that there are good ways to die and bad ways to die, unequivocally. Let's all hope that when the end comes, no matter how or where or when, we die in one of the good ways.
-
Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: What do people with multiple myeloma die from?
On a side note about the trauma and difficulties doctors have coping with seeing so many people die, there are lots of discussions in the scholarly professional literature about a form of PTSD in doctors that take care of critically ill people - ER docs, oncologists, critical care specialists, trauma surgeons.
Having been on both sides of this, I can say it's not the same - it's much worse to be the patient. However, the trauma experienced by the doctors day in and day out and seeing some really truly awful stuff that others can't even imagine is real. It's real, and difficult for doctors to openly talk about because we're supposed to be STRONG and EFFICIENT.
Having been on both sides of this, I can say it's not the same - it's much worse to be the patient. However, the trauma experienced by the doctors day in and day out and seeing some really truly awful stuff that others can't even imagine is real. It's real, and difficult for doctors to openly talk about because we're supposed to be STRONG and EFFICIENT.
-
Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: What do people with multiple myeloma die from?
Thanks for that, Tracy. It's very interesting and touching to hear about this from someone who's been on the other end of the stethoscope.
-
Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: What do people with multiple myeloma die from?
My mother was a nurse, and she said that, at one hospital she worked at, they rotated the medical staff in and out of the burn ward. Apparently, it was very mentally draining to see that much suffering.
I think a lot of people forget that medical professionals are people too and not immune to what they see.
I think a lot of people forget that medical professionals are people too and not immune to what they see.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: What do people with multiple myeloma die from?
I wonder how much of our increased life expectancy has to do with a more robust flu vaccine programs for the general public? More awareness of hand washing, hand sanitizers etc.
Since it does appear some are fine one week and pass away a few days later, maybe staying away from infection sources is one of the important strategies for living longer.
Since it does appear some are fine one week and pass away a few days later, maybe staying away from infection sources is one of the important strategies for living longer.
-
Stann - Name: Stann
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 9/11/09
- Age at diagnosis: 46
Re: What do people with multiple myeloma die from?
Hi TracyJ,
As Mike F said, thanks a lot for sharing your thoughts and feelings on this topic. And thanks for the very important work that you do as an ER physician.
I'm like you in wanting to know all I can about this disease. You said you're cursed by knowing too much as a doctor. I can certainly understand that perspective. But I feel like I'm cursed by knowing too little because I have no medical or healthcare background. I'm trying to educate myself from the ground up.
At any rate, best wishes to you, both in your role as a physician and in your role as a patient.
Mike B
As Mike F said, thanks a lot for sharing your thoughts and feelings on this topic. And thanks for the very important work that you do as an ER physician.
I'm like you in wanting to know all I can about this disease. You said you're cursed by knowing too much as a doctor. I can certainly understand that perspective. But I feel like I'm cursed by knowing too little because I have no medical or healthcare background. I'm trying to educate myself from the ground up.
At any rate, best wishes to you, both in your role as a physician and in your role as a patient.
Mike B
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: What do people with multiple myeloma die from?
Hi All
I was diagnosed in 2012 (at age 63) with acute multiple myeloma. At first I thought the doctor said "melanoma" so I was not very worried – my brother and sister both had multiple operations to remove benign melanomas. Then I was told it was MYELOMA and was an incurable and fatal bone cancer.
I was told by friends that their relative had gone for many years with it before they died, so I thought, ok. I also have many years to fight this thing. Then was told I had apparently had it for over 20 years ... Talk about a shock!
Two years later, after radiation therapy, chemotherapy, and Zometa treatments (bone covering injections that rock the heck out of your system), have now been told that the prognosis is for approximately 8 years after start of treatment. Have now gone two years so don't have that many left. Bummer. My 10 year old grandson cannot understand that I won't be around forever. Am now trying to get all my affairs in order and am really getting despondent. And yes, am having therapy for it .
Sorry all for ranting on but I just needed a forum to say hi, and that I have got this mongrel disease too. My thoughts and prayers are with everyone who is fighting this mongrel. God bless and goodnight.
Regards, Hoodster
I was diagnosed in 2012 (at age 63) with acute multiple myeloma. At first I thought the doctor said "melanoma" so I was not very worried – my brother and sister both had multiple operations to remove benign melanomas. Then I was told it was MYELOMA and was an incurable and fatal bone cancer.
I was told by friends that their relative had gone for many years with it before they died, so I thought, ok. I also have many years to fight this thing. Then was told I had apparently had it for over 20 years ... Talk about a shock!
Two years later, after radiation therapy, chemotherapy, and Zometa treatments (bone covering injections that rock the heck out of your system), have now been told that the prognosis is for approximately 8 years after start of treatment. Have now gone two years so don't have that many left. Bummer. My 10 year old grandson cannot understand that I won't be around forever. Am now trying to get all my affairs in order and am really getting despondent. And yes, am having therapy for it .
Sorry all for ranting on but I just needed a forum to say hi, and that I have got this mongrel disease too. My thoughts and prayers are with everyone who is fighting this mongrel. God bless and goodnight.
Regards, Hoodster
-
Hoodster