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
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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