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Thread: End Stage Myeloma - What to Expect???

  1. #1

    End Stage Myeloma - What to Expect???

    I'll start with the positive side of my story. My Dad (67yo) was diagnosed with MM in early 2002 and following some chemo and a stem cell transplant in 2003 (which was followed up with Thalidomide as part of a clinical trial), he achieved just over 4 years of good quality remission where he was able to lead a happy and close to normal life.

    Unfortunately the MM has come back and after several attempts at treatment over the last 3 months, nothing is having an impact. Today his specialist gave him the "talk" and told him there is nothing more they can do in terms of treatment. They are sending him home, where he is looked after by my Mum, to return to hospital if necessary for the end stage of his life.

    I would really appreciate if anyone could share with me their experiences of seeing a loved one through this stage of their myeloma. I understand the memories may be painful but it is very hard to find any information on this topic. His main symptoms at present are severe hypercalcaemia, low blood counts, and rapidly growing plasmacytoma-like tumors which cause him pain (this is being managed). He is still mobile but the high calcium levels make his movements staggered.

    Thanks in advance.

  2. #2
    Administrator Top User brainman's Avatar
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    Hi MandyMoo. I am very sorry about your father's Multiple Myeloma. Unfortunately (or maybe fortunately), this community does not have very many member who have to deal with MM. This means that you will probably not get very much information.

    My ex father in law died after fighting MM for several years when I was still married to his daughter. If your read my blog, you will see that I was very close to him, thinking of him as my father.

    A lot of his last months where spent in the hospital. Although his bones where in danger of breaking, he only broke his arm. That is what took him to the hospital in the first place. He died due to the other symptoms associated with MM... very low blood counts. He became very weak and developed pneumonia and died shortly after that. He also lost his appetite, lost a lot of weight, and had to stay in bed most of the time.

    But that was how his life ended. Before that, he had several times where he got so weak that he went to the hospital and we thought it was near the end only to see him regain strength and be able to return home. I pray that your father will do the same. I suggest to you that you spend as much time with your father as you possibly can. I know that my ex wife's presence and my then baby daughter's presence with him brought great joy. You will have to work hart to find what things will bring quality to the rest of his life.

    You might want to ask his medical team for a hospice referral. Hospices can be of great help to your father and to you. At least they can help you understand what is going on with your father.

    You and your father are in my thoughts and prayers.
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  3. #3
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    It's been a while sinc you posted Mandy, but I wanted to reply becuase I came looking here for support for what could have been me writing the exact same post. My father is 83 and just today got the "there isn't anything more we can do" talk from his doctor. On top of hat, he has a quarter sized malignant skin cancer next to his eye that is will be mri'd tomorrow.

    My parents are in Florida and I live in Oregon. They've been in a re-hab facility (as my mother broke 3 ribs a few weeks ago and my dad soon afterwards collapsed from the stress) on Friday adn I'll be down on Tuesday to stay with them a few weeks. I didn't know about my dad's treatment dead end when I made the plans.

    Like you, I am want to know what to expect in the coming weeks and months. I know no one has a crystal ball, but any information on how long he might have and what I can do to help would be incredibly helpful.

    I plan to meet with his oncologist/hemotologist early next week to get better understand where he is in his disease and what to expect. Any direction folks her can give folks like me and Mandy is greatly appreciated! hugs all around.

  4. #4
    Administrator Top User brainman's Avatar
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    Hi Wendy. I am very sorry about your father's MM. The message I posted to Mandy goes to you too.

    Interestingly enough, your father's story reminded me of another fact about my father in law; he too had shin cancers... multiple times in fact. He worked out in the sun for most of his life and around gasoline and other petroleum products for a large part of his life.

    It sounds like you will have your hands full caring for you father and mother. I too was my parents primary care provider during their last years. It is hard but rewarding at the same time.

    You, your father, and your mother are in my thoughts and prayers.
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  5. #5

    Dying of Multiple Myeloma

    Hello.

    My mother died from multiple myeloma this morning.

    Over the past few months, I've been looking online for information about what to expect. There's an account on MMSupport.net that was nice because it ended peacefully. I thought I would add my mother's story, since it might give comfort to some of the loved ones of people with MM.

    After being diagnosed five years ago, this past August my mother's doctor determined that her chemotherapy treatment (she had tried all the latest, most up-to-date varieties) was not putting her into remission. He told her should could go back on chemo (she'd been off for a few weeks to get some "clean" readings on her progress), but that it would continue to make her feel bad, thus affecting her quality of life, and she might gain very little in terms of life expectancy. Or, she could go into hospice care and feel better for the remaining time she had left. She chose the latter. She was just very tired by this point.

    Although my family had some trouble with an overly aggressive and haughty hospice administrator, it was generally a good experience. They sent nurses to check on her regularly. Initially my father and sisters took care of her, and she did well up through Christmas. She had become progressively weaker and more confused (she turned 80 at Christmas), but said afterwards that she had enjoyed herself during the holidays. She was still mobile, but used a walker. She was tired a lot, but usually cheerful. She had VERY little pain or even discomfort. She could get up to go to the bathroom and come to the dining room to eat and live a normal (although very sedate) life. Soon after the holidays (in January) she took a turn for the worse and became too weak to go to the bathroom by herself. We were lucky to be able to afford around-the-clock caregivers, and they soon took over almost all of the physical labor of her care, which enabled her to stay at home. Her mental state became increasingly confused; this was likely due to the hypercalcaemia that MM patients have. She started saying crazy things, and sometimes became mean and combative. This stage lasted about 4-6 weeks. She was on Seroquel and Atavan, but it seemed nothing would calm her down, and sometimes she stayed awake all night. She started complaining of occasional pain at this point, but the pain was easily treated with regular painkillers. She also had to be put on oxygen around this time. As she got worse, she got out of bed less and hospice soon decided that she should stay in bed for the duration. They claimed to be afraid of breaking bones and "internal bleeding" but provided no explanation why. (We in the family didn't agree with this, but . . .) About three weeks ago she became too weak to talk any longer. However, she was very relaxed and seemed comfortable. With any sign of pain, the caregivers administered oral morphine. She never needed anything intravenous, and the painkillers worked great. A few days ago she became unable to swallow anything, even water, without aspirating, so we knew the end was near. When she died this morning, my sisters, father, and brother-in-law were all at her bedside; the caregiver on duty had seen signs that death was very near and called them (I live out of town). Her passing was so peaceful, my sister said she wasn't even sure she had died at first.

    She was diagnosed in March of 2004, so she really defied the odds. A little over two years ago she was rushed to the hospital with both pneumonia and some kind of seizure or stroke. During that stay we were twice told she would not survive, but she did. The hospice nurses have been saying for a month that she could go any minute, but she hung on. I'm really proud of her. She stayed dignified, but kept her sense of humor as long as her mind held out (and even after she got so confused, she was still funny!). At Christmas, she was cracking jokes about her funeral. My whole family is so relieved that she was able to die at home, comfortable, and without pain.

    When you read about MM, it sounds as though excruciating pain is inevitable, but my mother never had any pain that regular painkillers couldn't easily take care of, and she never had to have them around the clock until the very last days. (Her last bone-scan showed very little deterioration of her bones, and that's one of the big causes of pain. But that was a long time ago.) So while every case is different, a painful death is not inevitable. We've also had lots of time to prepare ourselves for her death.

    Thanks for letting me tell her story. I think it's helpful for my grieving. And I hope that it will give some of you comfort knowing that while the end is still "THE END," death from MM can be less traumatic than from a lot of other causes.

  6. #6

    thank you for sharing

    I am sorry for your loss, and thankfull that your mother did not have pain. my mother is dealing with pain and hates taking the painmeds ,like loratab and others like it she says they make her loopy, but without the meds she complains of pain and looks like the pain is over comming her.I wish the doctors would take time to tell me directly what is happening and what to expect. and answer the question is my mother dying? I am numb and don't know what to . I need real answers without the fluff.
    wendi

  7. #7
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    Closure

    Hi, I found this thread remembering my mom who recently passed away on February 16 this year. My mom was diagnosed with MM in September 09. She was treated with chemo, and was giving two transplants. However the 3 years she suffered with MM, and as an outsider looking in I must say that the treatment did more harm then good. She would be on the all the diffrent type of treatments and pain killers (so many it's hard to remember them all) however her body would respond to the treatment for a couple of weeks before MM would come back in a more aggressive manner. Towards the end after her second translplan I believed she was tired and here will to continue to fight was lost. I don't blame anyone, only god gives and takes away, but if I were to go back in time I would of wanted to understand what to expect with MM. I read alot about it and tried really hard to stay on top when my mom was fighting. I don't think the doctors had the heart to tell us what to expect. When we went to her appointments they would treat her and would ask the same questions. How is your pain? Do you have enough medication? Towards the end of her treatment here blood level would drop very quick and the medication would only keep that from not happening for a short while. My mom died at age 47 extreamly young for MM. The MM was very aggressive. I think my mom new the end was near toward the last few days she wanted to do and get a lot of stuff done, that she had been putting back since she was diagnosed.

    lz

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    Question Trying to avoid blowouts

    My 80 year old grandmother has had MM for a long time and last July the family was told by the doctore that there was nothing more that they could use to treat her condition.She also suffers from Alzheimer. As we understood her fate, we did our best to make her comfortable. My grandmother has also been sassy and cursed a lot but almost a year later with she has gotten meaner and violent. I've been reading on the death and dying process and I am wondering if this is the MM, Alzheimer or in general d&d process. Possibily all. It's tough to attempt to take care of someone who fights and fusses every step of the way. I don't know what more to expect moving forward but for those who could relate with such behavior, I found it best to just pick certain battles, take breaks, and USE hospice care. The children in the family are scared of her and we are trying to remind them that she wasn't always that way. She refused to drink water (she is addicted to diet pepsi) and still has a good appetite however she can not control her urine and we do alot of cleaning. PineSol with lemon is very calming for me . Wearing depends or any other under garment is another fight and I am not for sure how to get to to understand that she needs them. She is accusing everyone of stealing things and which leaves us dumbfounded and even more irratated. I believe that hospice didn't think she would still be alive and honestly I am shocked that she is still alive too. I feel sorry for her because when she is in her right mind, she can remeber how she use to be and she will sob for hours.

    Has anyone else experienced this too? What were some good strategies that your family used to avoid stressful ourbreaks with the patient and with each other. Open to all coments.

  9. #9
    Senior User carolynjl's Avatar
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    Jazzyj, I'm so sorry your family is having to experience this with your precious grandmother. Everything you describe happened with my mother in law who lived with us. It was Alzheimer's, which is a heartbreaking disease to see your loved one go through. As her understanding diminishes, she will become increasingly fearful of normal things - changing her clothes, etc. and you will just have to comfort and reassure her. Get a book on Alzheimer's, it will help you understand the stages and how to relate to her in less stressful ways for all of you. There is no use in trying to explain things or convince her you're not stealing from her or trying to poison her, etc. because she simply will not have the capacity to understand. Try to remember it is not "her" doing and saying these things, it is the disease that is destroying her brain. It is one of the saddest, most frustrating, and difficult things your family will ever go through. I will pray for your strength, patience, and peace.
    Carolyn
    69 yr. old female, retired
    Diagnosed NH Follicular Lymphoma 2/11/2011
    Upgraded to Stage 4
    5-6 nodes on left side of neck, 2 on right side
    biopsy left neck node: grade 1-2
    radiation not an option
    bone marrow: positive
    small tumors abdomen
    currently doing W & W approach
    TRUSTING IN MY AWESOME SAVIOR - DAY BY DAY
    Blessed w/ loving supportive family
    Grieving the loss of my Mother/best friend

  10. #10
    My mother was given the bad news that she had MM after complaining of feeling tired and having headaches. She had surgery in 2008 due to a hemotoman. She gose to Kaiser hospital and they said that they don't believe in stages. After being very presistent on what stage she was in her then Dr said stage, this was in 2010's hospitalization. We have had at lease three close calls. Now the doctor said that there's nothing else they can do. I the diagnosis was late, but now looking at it the headaches was a sign. Now the doctor said she has 4-6mos to live. I trust in God that HE already has her in His hands. Watching her go down isn't going to be easy but God keeps me strong. I will post more later.
    Christine's daughter.

  11. #11
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    Dad passed away, last two months were very hard

    My dad who was 84 and was diagnosed (MM stage 3B) a year ago passed away in Feb.

    He exhibited some similar behavior/symptoms as stated below(first time replying to post so hope posting shows to which message I replied) but he did experience extreme pain. As soon as he was diagnosed he was put on mild chemo regimen. In Sep. last year it was discovered some bones in spinal chord cage were affected. He went through radiation 10 sessions. Developed ulcers in the throat and was very, very, painful/uncomfortable for few weeks. After which he seemed better but in Dec. came down with sever chest and urinary infection and low blood count so blood was transfused(only the platelets I believe called Pax cells?). As mentioned below till this infection hit, he was mobile, went to work(he is a Doctor so saw ~20 patients the night before). In a week or so he overcame the infection but as soon as he overcame that he complained of intense pain in the girdle. It prevented him from even sitting up/moving in bed etc. Pain was so intense he kept asking for a poison pill. Doctors advised radiation may help pain. 8 Session of radiation was given(starting Dec 20th). However after all the sessions were over he had post radiation effect (we think) in one day he almost lost 30% of his weight by passing massive quantity of motion. This was the beginning of the end to come. Till post radiation effect, he kept telling I feel more energized now then when he was diagnosed with the disease and wanted to return back to work(had excellent memory, eye sight, hearing, sugar level, BP etc.). After post radiation effect he started showing signs of confusion, anger, not sleeping for 24-26 hours and then sleeping straight through for 24 hours (not sure how much the pain killers were acting on his brain). Throughout this period he had pain despite the powerful drugs that were administered even intravenously he experienced pain . Just a brush of a finger on his leg he would show signs of extreme pain. Last few days were horrible to watch and see, he stopped eating, then stopped drinking, stopped all communication 3-4 day before. Last 2 days we could hear the scary noise when breathing due to fluid build-up etc. etc. All in all it seemed like a very miserable way to die for horrible for us to experience this. He died on Feb 2nd.(exactly 2 months after chest/urinary infection date). One question will always remain in our minds - if he was not given radiation how long would he have survived and what quality of life(how much pain) he would had.

    Lastly I wish no one to get MM based on what I saw my dad went through.

    Pray all your loved ones do not suffer much.

    RCB.

    My mother died from multiple myeloma this morning.

    Over the past few months, I've been looking online for information about what to expect. There's an account on MMSupport.net that was nice because it ended peacefully. I thought I would add my mother's story, since it might give comfort to some of the loved ones of people with MM.

    After being diagnosed five years ago, this past August my mother's doctor determined that her chemotherapy treatment (she had tried all the latest, most up-to-date varieties) was not putting her into remission. He told her should could go back on chemo (she'd been off for a few weeks to get some "clean" readings on her progress), but that it would continue to make her feel bad, thus affecting her quality of life, and she might gain very little in terms of life expectancy. Or, she could go into hospice care and feel better for the remaining time she had left. She chose the latter. She was just very tired by this point.

    Although my family had some trouble with an overly aggressive and haughty hospice administrator, it was generally a good experience. They sent nurses to check on her regularly. Initially my father and sisters took care of her, and she did well up through Christmas. She had become progressively weaker and more confused (she turned 80 at Christmas), but said afterwards that she had enjoyed herself during the holidays. She was still mobile, but used a walker. She was tired a lot, but usually cheerful. She had VERY little pain or even discomfort. She could get up to go to the bathroom and come to the dining room to eat and live a normal (although very sedate) life. Soon after the holidays (in January) she took a turn for the worse and became too weak to go to the bathroom by herself. We were lucky to be able to afford around-the-clock caregivers, and they soon took over almost all of the physical labor of her care, which enabled her to stay at home. Her mental state became increasingly confused; this was likely due to the hypercalcaemia that MM patients have. She started saying crazy things, and sometimes became mean and combative. This stage lasted about 4-6 weeks. She was on Seroquel and Atavan, but it seemed nothing would calm her down, and sometimes she stayed awake all night. She started complaining of occasional pain at this point, but the pain was easily treated with regular painkillers. She also had to be put on oxygen around this time. As she got worse, she got out of bed less and hospice soon decided that she should stay in bed for the duration. They claimed to be afraid of breaking bones and "internal bleeding" but provided no explanation why. (We in the family didn't agree with this, but . . .) About three weeks ago she became too weak to talk any longer. However, she was very relaxed and seemed comfortable. With any sign of pain, the caregivers administered oral morphine. She never needed anything intravenous, and the painkillers worked great. A few days ago she became unable to swallow anything, even water, without aspirating, so we knew the end was near. When she died this morning, my sisters, father, and brother-in-law were all at her bedside; the caregiver on duty had seen signs that death was very near and called them (I live out of town). Her passing was so peaceful, my sister said she wasn't even sure she had died at first.

    She was diagnosed in March of 2004, so she really defied the odds. A little over two years ago she was rushed to the hospital with both pneumonia and some kind of seizure or stroke. During that stay we were twice told she would not survive, but she did. The hospice nurses have been saying for a month that she could go any minute, but she hung on. I'm really proud of her. She stayed dignified, but kept her sense of humor as long as her mind held out (and even after she got so confused, she was still funny!). At Christmas, she was cracking jokes about her funeral. My whole family is so relieved that she was able to die at home, comfortable, and without pain.

    When you read about MM, it sounds as though excruciating pain is inevitable, but my mother never had any pain that regular painkillers couldn't easily take care of, and she never had to have them around the clock until the very last days. (Her last bone-scan showed very little deterioration of her bones, and that's one of the big causes of pain. But that was a long time ago.) So while every case is different, a painful death is not inevitable. We've also had lots of time to prepare ourselves for her death.

    Thanks for letting me tell her story. I think it's helpful for my grieving. And I hope that it will give some of you comfort knowing that while the end is still "THE END," death from MM can be less traumatic than from a lot of other causes.[/QUOTE]

  12. #12
    Administrator Top User Didee's Avatar
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    Please be aware that the first and only post of MandyMoo's was in 2008.
    Thank you, though, for the information.
    I hope people reading here will be helped by it.
    Aussie, age 57
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  13. #13
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    Good Morning Brian:

    Do you know of or can you suggest a Cancer Forum Board that has Multiple Myeloma patients and care givers?



    Quote Originally Posted by brainman View Post
    Hi MandyMoo. I am very sorry about your father's Multiple Myeloma. Unfortunately (or maybe fortunately), this community does not have very many member who have to deal with MM. This means that you will probably not get very much information.

    My ex father in law died after fighting MM for several years when I was still married to his daughter. If your read my blog, you will see that I was very close to him, thinking of him as my father.

    A lot of his last months where spent in the hospital. Although his bones where in danger of breaking, he only broke his arm. That is what took him to the hospital in the first place. He died due to the other symptoms associated with MM... very low blood counts. He became very weak and developed pneumonia and died shortly after that. He also lost his appetite, lost a lot of weight, and had to stay in bed most of the time.

    But that was how his life ended. Before that, he had several times where he got so weak that he went to the hospital and we thought it was near the end only to see him regain strength and be able to return home. I pray that your father will do the same. I suggest to you that you spend as much time with your father as you possibly can. I know that my ex wife's presence and my then baby daughter's presence with him brought great joy. You will have to work hart to find what things will bring quality to the rest of his life.

    You might want to ask his medical team for a hospice referral. Hospices can be of great help to your father and to you. At least they can help you understand what is going on with your father.

    You and your father are in my thoughts and prayers.
    Newly wed of one year & 1/2, hubby diagnosed with Multiple Myeloma fall of 2011, counts were down, counts are up, counts are all over the place. Now at advanced Stage 3 Multiple Myeloma, how does that happen within 9 months if the treatments were going well and the cancer cell count was down. He recently had a heart bypass to open a blocked valve and another surgery for a rod inserted in his left shoulder and arm due to bone deterioration and liasions. Recent X-Rays have shown liasions in his lower neck and lower spine.

  14. #14
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    Hey there , sorry to hear about your dad it is very hard to deal with stuff like this. I am sorry to tell you but MM is one of the worse cancers there is , its called myeloma but the multiple is used because it goes to multiple areas of the body. There is no overcoming this cancer and the end result is nothing but death.However, I will share with you how my experience was.

    My dad was diagnosed with MM in 2010 at 64 years old. He went under chemo therapy and did the bone marrow transplant. He was also taking revimead or what ever that medicine is called. I would like to tell you about the last month mostly. He was very confused , hallucinating, and saying stuff he would never say. My dad could not control his bladder. We finally went to the hospital and they said his kidneys are failing. They did an xray on his chest and rib and said that over 65% of his body was cancer cells. They stopped treatment and it was very hard for us as the family to deal with that. On his last few days , they stopped his water , gave him pain killers and he was just sleeping mostly. On the final day he was breathing very very hard and difficult , and it almost felt like he was choking. The doctors said its normal but who knows?

    Finally on his last hour we saw him breath extremely difficult and his heart rate constantly went up and he passed away.

    Im generalizing the story, if in details you need to know anything specific let me know and ill gladly answer you.

    It took about less than 3 years for my father to make it.

  15. #15
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    Hubby is now dealing with a very advanced agressive Stage 3 M M. He has had kidney failure and kidney trama and has been in the hospital for 2 weeks plus. The Dr says he will have to have dialysis 3 days a week Mon Wed and Fri the newer methods of chemo treatment are not working anymore so they are putting him back on the first treatments from 2 1/2 years ago. He eats very little and drinks very little, he's constantly throwing up what little he does eat and drink. Currently they give him meds for sickness but they only work for about 4 hours. Still can't believe in one year life has CHANGED so much for our family.
    Newly wed of one year & 1/2, hubby diagnosed with Multiple Myeloma fall of 2011, counts were down, counts are up, counts are all over the place. Now at advanced Stage 3 Multiple Myeloma, how does that happen within 9 months if the treatments were going well and the cancer cell count was down. He recently had a heart bypass to open a blocked valve and another surgery for a rod inserted in his left shoulder and arm due to bone deterioration and liasions. Recent X-Rays have shown liasions in his lower neck and lower spine.

  16. #16
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    Hello Everyone,

    I stumbled upon this site as I try to understand MM. Weeks ago I learned that my 62 year old father has MM when he was hospitalized for pneumonia, and today was told that hospice is is recommended to keep him comfortable, I guess the end is near. I think about my dear father. A very stubborn man, who avoided going to the doctor for years, he just didnt trust them. (Cultural thing for some in his generation, yes?). I think about my mother, who I lost to lymphoma when I was 18 (I am 35 now). With my current thoughts, I am trying to find some feelings of peace. My father misses my mother so much, I feel like he is ready to be with her. I understand it. However, I have young children (6 & 2) and I am somber how they will not have the experience to grow and develop with loving grandparents. I imagine my older brother feels the same way. As I see my father be less than who he was, I remember how he was always superman in my eyes. Strong, stern with discipline, hard working, and always made sure my brother and I were taken care of. I learned so many things from him. I remember graduating with my Masters degree and giving him a copy (My parents never went to college) of my diploma and the firm handshake I got from him spoke volumes. He was not perfect, and in my younger years I was critical of him for such (Never to him directly) but now days when I think that someone isnt perfect....get in line...
    I find myself fighting tears alot, my wife has been so supportive, even when I am not open about my feelings. My father told me not to cry, but to listen to songs from the motown era and smile. I guess this is what I will do right now.

    I thank everyone for sharing their story. I read every single one. I imagine in moments of somber I will post again, as it helps to process my feelings. I hope you all dont mind.

    Warm regards.

 
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