End Stage Myeloma - What to Expect???

MandyMoo · New User Joined: 06 Feb 2008 Posts: 1

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.

brainman

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
Administrator and 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
Twitter: @JimHawkins54
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WendyA · New User Joined: 05 Mar 2008 Posts: 1 Location: Pacific NW

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.

brainman

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
Administrator and 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
Twitter: @JimHawkins54
FaceBook: http://www.facebook.com/James.Hawking54?ref=profile

readymade · New User Joined: 25 Mar 2009 Posts: 1

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.

wendi · New User Joined: 15 Feb 2009 Posts: 9

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. Crying or Very sad

_________________
wendi

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