In my mother's case, her cause of death today was myeloma transformed into plasma cell leukemia. The malignant plasma cells in the blood stream were at 94% yesterday and may very well have been higher today. It crowded out her ability to have any normal blood functions (platelets were at 2 and hemoglobin was at 3 this morning). It also lead to kidneys shutting down, heart rate spiking and blood pressure dropping.
And yet it was a peaceful end. Aided by some morphine, Mom just drifted off to sleep and never woke. It was so gentle, that we only realized she was gone when all of a sudden we thought "Hey! She hasn't breathed for a minute."
Forums
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: What do people with multiple myeloma die from?
I am very sorry for the loss of you mother, BeatMyeloma.
I hope that the dedicated support and caring that you provided for your mother in her time of difficulty provides a degree of satisfaction to you. Thank you for sharing this difficult experience with the forum.
God Bless her and your family.
I hope that the dedicated support and caring that you provided for your mother in her time of difficulty provides a degree of satisfaction to you. Thank you for sharing this difficult experience with the forum.
God Bless her and your family.
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JPC - Name: JPC
Re: What do people with multiple myeloma die from?
Hi BeatMyeloma, I am sorry to hear of the passing of your mother.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: What do people with multiple myeloma die from?
BeatMyeloma:
My sincere condolences on the passing of your mother. It must be hard to have lost her during the holiday season.
Also, thank you for letting us know that when the end came, it was peaceful. That is a comfort to me and I'm sure others here.
My sincere condolences on the passing of your mother. It must be hard to have lost her during the holiday season.
Also, thank you for letting us know that when the end came, it was peaceful. That is a comfort to me and I'm sure others here.
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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?
Thank you all! I do have some lessons to share.
1. Get palliative care involved from the beginning. It's not hospice. We finally got Mom a consult and the things they suggested made the last weekend of her life at home much more pleasant. It's unfortunate that things went off the rails at the end (Mom was supposed to try Darzalex the day she died), but not their fault. One of my biggest regrets is that we didn't call them years ago. As vitally important as myeloma specialists are, they are doing the good work of eradicating and/or keeping your myeloma under control. Palliative care docs are completely devoted to your quality of life and have lots suggestions--who doesn't want that? Don't be afraid to ask for a consult with them!
2. Morphine is awesome at the time of death.
3. Take time to write your wishes down for things like funeral arrangements. And have important files like medical power of attorney, DNR/DNI on file. Do it while you're feeling good.
4. Hope is important. It kept us going at some tough moments. And there's reason for hope with the new drugs. But when Mom's multiple myeloma turned into plasma cell leukemia, it was a harsh lesson into clonal heterogeneity. It is a very, very unfortunate fact, but things can change. For the first time, I understood what they mean when they say "incurable cancer". I hope and pray everyone here does well for a very, very long time. But we are not at a cure yet, and frankly, I don't think we're at a chronic condition point either, like diabetes. We'll get there--but it won't be today, so research can't let up.
1. Get palliative care involved from the beginning. It's not hospice. We finally got Mom a consult and the things they suggested made the last weekend of her life at home much more pleasant. It's unfortunate that things went off the rails at the end (Mom was supposed to try Darzalex the day she died), but not their fault. One of my biggest regrets is that we didn't call them years ago. As vitally important as myeloma specialists are, they are doing the good work of eradicating and/or keeping your myeloma under control. Palliative care docs are completely devoted to your quality of life and have lots suggestions--who doesn't want that? Don't be afraid to ask for a consult with them!
2. Morphine is awesome at the time of death.
3. Take time to write your wishes down for things like funeral arrangements. And have important files like medical power of attorney, DNR/DNI on file. Do it while you're feeling good.
4. Hope is important. It kept us going at some tough moments. And there's reason for hope with the new drugs. But when Mom's multiple myeloma turned into plasma cell leukemia, it was a harsh lesson into clonal heterogeneity. It is a very, very unfortunate fact, but things can change. For the first time, I understood what they mean when they say "incurable cancer". I hope and pray everyone here does well for a very, very long time. But we are not at a cure yet, and frankly, I don't think we're at a chronic condition point either, like diabetes. We'll get there--but it won't be today, so research can't let up.
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: What do people with multiple myeloma die from?
One more: enjoy life in all its messy glory, everyday!!
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: What do people with multiple myeloma die from?
Terri,
I'm so sorry to hear of your daughter's passing. My thoughts and prayers are with you, and the rest of your family.
I'm so sorry to hear of your daughter's passing. My thoughts and prayers are with you, and the rest of your family.
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Smmr1321
Re: What do people with multiple myeloma die from?
My mother passed away about 12 days ago. She lived with multiple myeloma for 8 years. She had good results from stem cell transplants (she had three - two in a row the first time, and then a third that had much shorter-lasting results). After that, she endured a round of chemo, and then they went through the handful of medications they have available. Once she was down to one last medication, the doctors told her that, if that one didn't work (as the others didn't), then she would have 6-12 months to live.
The last medication didn't work, but the shocking reality was that she didn't have 6-12 months. She only had 4-5 weeks. But she knew she was dying before they even told her 6-12 months. She said she could feel it in her body. I don't know exactly what that meant.
When hospice came, they told us that calcium would be leaching out of her bones rapidly (in fact, it had started already and it made her very sleepy). She said that the calcium in her bloodstream would shut down her kidneys and she would die from kidney failure. That is exactly what happened. And it happened fairly quickly. The hospice nurse was able to talk to my mother one time where my mother was able to engage in the conversation. The next time the nurse came, my mother was bed bound, and not verbal. The nurse said that it was happening fast. From that point on, I would say it was only 5 days until she passed away.
Her urine was VERY cloudy (I have to assume we were seeing the calcium in her urine, but I don't know that for a fact). We finally had her catheterized.
(Pro tip: as soon as the person is bed bound, please have them catheterized. The ONE thing my mother kept trying to get out of bed to do was get up to go to the bathroom. She needed to be walked and monitored. And EVERY trip to and from the bathroom, and then even the commode next to her bed, was VERY dangerous because she was SO weak and her bones were so fragile. Towards the end, she was dead weight. I'm very irritated that Hospice did not suggest catheterization much earlier. Incidentally, we had my mother at home the entire time.)
The night we had her catheterized, she produced a certain amount of urine. My father kept watch of how much urine was produced by taking a picture with his phone of the amount of urine in the bag. In the early morning hours the next morning, he took another picture and told me that no new urine had been produced. Once the person stops producing urine, it means they are in kidney failure. So we were concerned this was the case. In fact, it was. She died 5 hours later.
I am truly sorry if this is upsetting for anyone to read, but I do believe that knowledge is power. And knowing what to expect is half the battle. We were kind of in the dark about a lot of things that I wish we weren't. If we had known more about what to expect, we could have been more prepared about how to make my mother more comfortable (although, I do believe we did an excellent job).
One of the things we were expecting was bad nosebleeds. The hospice nurse told us to get dark (black) towels (which we thankfully never had to use, but it's good to have them on hand). My mother had already suffered severe nosebleeds months before, which required ER visits, because her platelets were so low. So, we were kind of used to that. But we didn't know if we should now expect hemorrhaging from her nose (or anywhere else).
She did have two nosebleeds that were "average," and we were able to get them under control. Each of those nosebleeds produced a large (three inches long?) blood clot. I think that was happening because the blood was going down the back of her throat and forming a large clot that she would later cough up. However, she would not allow us to look in her mouth.
We didn't get to see inside her mouth until hours before her death. I believe she was in a coma at that point, and her mouth had fallen open. Her breathing was very labored. My father tried to swab out her mouth. He used a small flashlight to look inside her mouth to see what he was doing. It was then that we saw that the entirety of the inside of her mouth was caked with dried blood. It was upsetting to see. And I wish we had known about it sooner. (Although I'm not sure what we could have done about it.) But she was very protective of her mouth and wouldn't let us clean it. She was even sometimes struggling against us putting dissolvable pills under her tongue or use a syringe to put liquid medicine in her mouth. We managed to do it, but sometimes she didn't want us to. In terms of administering medication, my mother did better if we told her what the medication was and what it was for. She was more accepting of it.
Caring for my mother at home was the best decision for us and for her. But it required me, my sister, and my father to be home and NEXT TO HER around the clock, 24/7. Mainly because she kept trying to get up to go to the bathroom. We had to be RIGHT there to catch her and bring her to the toilet. (And back.) This became increasingly difficult and scary. We were also afraid she might fall out of bed, which never happened. But we took shifts.
BE AWARE: Hospice only is present for one or two hours a day. And on the weekend (when we needed them the most), they didn't come at all, unless we called their emergency number. And you won't necessarily get immediate responses. So, if you're going to do this at home, be prepared that you're largely on your own. You must have enough people to be with that person around the clock (unless they are catheterized and in a hospital bed in the home; we had a hospital bed, but were never able to get my mother downstairs into it). And those people must be willing to take care of every need. That means helping with bathroom needs. Cleaning up and stopping nosebleeds (and other possible bleeding). Moving the person, either to readjust them in bed, or go back and forth from the bathroom, which often takes two people unless you've very strong and tall. Administering medications, which are sometimes suppositories, especially towards the end. Feeding them.
Once my mother wasn't able to eat anymore, ice cream was a wonderful substitute. Eventually, the person stops eating and drinking altogether. At some point, swallowing becomes difficult and then impossible. So, the ice cream was something she enjoyed for maybe two days. She did cough up an oxy pill that she had tried to swallow at some point. That's when we knew she was having trouble swallowing.
I hope some of this information is helpful to other people. These are things I wish I'd known going into this process. I am VERY proud of the care we gave my mother at the end of her life and assisting her in that journey. I am proud and relieved we were able to do it at home. But not everyone is able to do that. We were only able to do that because there were three of us taking turns, and we were willing and able to take care of every need.
Unfortunately, I spent a lot of that time silently sobbing next to my mother in the wee hours of the morning. I tried to hide it, but there must have been times she knew. What was so unfortunate about how emotional I was, was that I was unable to talk to her during that time. I have to believe she understood that I just couldn't do it.
Play music for your loved one! Their favorite songs! When we thought my mother was unable to respond at all, my sister got a response out of her by playing Bolero. It was just a moan, but it was a positive response.
Also, be prepared for the person to be very restless. It's hard to watch because you get the sense that they are struggling. Hospice provides Ativan and Haldol for anxiety (which is what the restlessness is about). It helps. It helps a great deal. Keep up with the anxiety medication and the pain medication. Even if the person is resting soundly. You don't want the medication to wear off. I will say that my mother was able to nod or shake her head up until maybe two or three days before her death. Every time we asked her if she was in pain, she shook her head no. I don't know if that changed after she was unable to respond.
Again, I hope this is helpful to some people out there and I hope it's not upsetting for anyone. Nothing but love from me and my family for what you are going through.
The last medication didn't work, but the shocking reality was that she didn't have 6-12 months. She only had 4-5 weeks. But she knew she was dying before they even told her 6-12 months. She said she could feel it in her body. I don't know exactly what that meant.
When hospice came, they told us that calcium would be leaching out of her bones rapidly (in fact, it had started already and it made her very sleepy). She said that the calcium in her bloodstream would shut down her kidneys and she would die from kidney failure. That is exactly what happened. And it happened fairly quickly. The hospice nurse was able to talk to my mother one time where my mother was able to engage in the conversation. The next time the nurse came, my mother was bed bound, and not verbal. The nurse said that it was happening fast. From that point on, I would say it was only 5 days until she passed away.
Her urine was VERY cloudy (I have to assume we were seeing the calcium in her urine, but I don't know that for a fact). We finally had her catheterized.
(Pro tip: as soon as the person is bed bound, please have them catheterized. The ONE thing my mother kept trying to get out of bed to do was get up to go to the bathroom. She needed to be walked and monitored. And EVERY trip to and from the bathroom, and then even the commode next to her bed, was VERY dangerous because she was SO weak and her bones were so fragile. Towards the end, she was dead weight. I'm very irritated that Hospice did not suggest catheterization much earlier. Incidentally, we had my mother at home the entire time.)
The night we had her catheterized, she produced a certain amount of urine. My father kept watch of how much urine was produced by taking a picture with his phone of the amount of urine in the bag. In the early morning hours the next morning, he took another picture and told me that no new urine had been produced. Once the person stops producing urine, it means they are in kidney failure. So we were concerned this was the case. In fact, it was. She died 5 hours later.
I am truly sorry if this is upsetting for anyone to read, but I do believe that knowledge is power. And knowing what to expect is half the battle. We were kind of in the dark about a lot of things that I wish we weren't. If we had known more about what to expect, we could have been more prepared about how to make my mother more comfortable (although, I do believe we did an excellent job).
One of the things we were expecting was bad nosebleeds. The hospice nurse told us to get dark (black) towels (which we thankfully never had to use, but it's good to have them on hand). My mother had already suffered severe nosebleeds months before, which required ER visits, because her platelets were so low. So, we were kind of used to that. But we didn't know if we should now expect hemorrhaging from her nose (or anywhere else).
She did have two nosebleeds that were "average," and we were able to get them under control. Each of those nosebleeds produced a large (three inches long?) blood clot. I think that was happening because the blood was going down the back of her throat and forming a large clot that she would later cough up. However, she would not allow us to look in her mouth.
We didn't get to see inside her mouth until hours before her death. I believe she was in a coma at that point, and her mouth had fallen open. Her breathing was very labored. My father tried to swab out her mouth. He used a small flashlight to look inside her mouth to see what he was doing. It was then that we saw that the entirety of the inside of her mouth was caked with dried blood. It was upsetting to see. And I wish we had known about it sooner. (Although I'm not sure what we could have done about it.) But she was very protective of her mouth and wouldn't let us clean it. She was even sometimes struggling against us putting dissolvable pills under her tongue or use a syringe to put liquid medicine in her mouth. We managed to do it, but sometimes she didn't want us to. In terms of administering medication, my mother did better if we told her what the medication was and what it was for. She was more accepting of it.
Caring for my mother at home was the best decision for us and for her. But it required me, my sister, and my father to be home and NEXT TO HER around the clock, 24/7. Mainly because she kept trying to get up to go to the bathroom. We had to be RIGHT there to catch her and bring her to the toilet. (And back.) This became increasingly difficult and scary. We were also afraid she might fall out of bed, which never happened. But we took shifts.
BE AWARE: Hospice only is present for one or two hours a day. And on the weekend (when we needed them the most), they didn't come at all, unless we called their emergency number. And you won't necessarily get immediate responses. So, if you're going to do this at home, be prepared that you're largely on your own. You must have enough people to be with that person around the clock (unless they are catheterized and in a hospital bed in the home; we had a hospital bed, but were never able to get my mother downstairs into it). And those people must be willing to take care of every need. That means helping with bathroom needs. Cleaning up and stopping nosebleeds (and other possible bleeding). Moving the person, either to readjust them in bed, or go back and forth from the bathroom, which often takes two people unless you've very strong and tall. Administering medications, which are sometimes suppositories, especially towards the end. Feeding them.
Once my mother wasn't able to eat anymore, ice cream was a wonderful substitute. Eventually, the person stops eating and drinking altogether. At some point, swallowing becomes difficult and then impossible. So, the ice cream was something she enjoyed for maybe two days. She did cough up an oxy pill that she had tried to swallow at some point. That's when we knew she was having trouble swallowing.
I hope some of this information is helpful to other people. These are things I wish I'd known going into this process. I am VERY proud of the care we gave my mother at the end of her life and assisting her in that journey. I am proud and relieved we were able to do it at home. But not everyone is able to do that. We were only able to do that because there were three of us taking turns, and we were willing and able to take care of every need.
Unfortunately, I spent a lot of that time silently sobbing next to my mother in the wee hours of the morning. I tried to hide it, but there must have been times she knew. What was so unfortunate about how emotional I was, was that I was unable to talk to her during that time. I have to believe she understood that I just couldn't do it.
Play music for your loved one! Their favorite songs! When we thought my mother was unable to respond at all, my sister got a response out of her by playing Bolero. It was just a moan, but it was a positive response.
Also, be prepared for the person to be very restless. It's hard to watch because you get the sense that they are struggling. Hospice provides Ativan and Haldol for anxiety (which is what the restlessness is about). It helps. It helps a great deal. Keep up with the anxiety medication and the pain medication. Even if the person is resting soundly. You don't want the medication to wear off. I will say that my mother was able to nod or shake her head up until maybe two or three days before her death. Every time we asked her if she was in pain, she shook her head no. I don't know if that changed after she was unable to respond.
Again, I hope this is helpful to some people out there and I hope it's not upsetting for anyone. Nothing but love from me and my family for what you are going through.
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Carrie
Re: What do people with multiple myeloma die from?
Thank you, Carrie, and I am so sorry for your loss. As hard as it is to read, I am a person who does better when they know what might happen. When something is a shock, it is harder to do what needs to be done. I appreciate your willingness to share difficult truths.
Re: What do people with multiple myeloma die from?
I do want to add (even though it's probably obvious) that this was ONLY my mother's and our experience. Everyone is going to have different experiences. And I have nothing else to compare our experience to. That said, the hospice nurse did tell us how it would play out, and it played out pretty much the way she said it would. As well, there are people who get many more years than the 8 my mother got after her multiple myeloma diagnosis.
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Carrie