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

  1. #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]

  2. #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 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #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.

  4. #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.

  5. #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.

  6. #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.

  7. #17
    The doctors will generally refuse/fail to diagnose the “end stages” of MM: looking bad by being wrong is worse than getting beaten up by your sister. With big egos to go along with those big brains, doctors also have a real fear of failure, even in “terminal” or “incurable” cancers like MM. I have a surgeon who won’t discuss the fact that my broken bones aren’t healing. I’m left to asking the nurses or guessing. Well, I suppose it depends, but I wouldn’t recommend slipping and breaking a leg like I did. It's not going to heal. And break both legs you’re gonna wind up in bed, maybe a little sooner than you were thinking. So be really careful. Two relapses is enough—if this guy won’t talk, and if my oncologist won’t tell me why I went from one blood test per month to one per week? Two relapses is quite enough to switch gears and change teams. We have it bad enough, we shouldn’t have to guess whether our doctors would rather see us dead than talk to us. MM is incurable. It ends like it starts—who knows? You don’t die from MM, it’ll be an infection or kidney failure. Before my doctor knew exactly what was wrong with me, he showed me a list of possible diseases, pointed to MM and said, you don’t want it to be this one it’s a long slow agonizing death. And those were probably the last honest words out of my doctor’s mouth. And that’s my diagnosis, I’m sticking to it. That’s it for my reply; I’d like to leave you a note about these posts. If it keeps up I’m going to feel free to go the other way, and you don’t want to see me go the other way.
    Last edited by po18guy; 07-10-2018 at 07:44 PM. Reason: charity

 

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