My Father Has Mm, And We Received Bad News This Week

Mike: I am so sorry re your Dad as I know how much pain he is in. I had those lesions on all my thoracic spine and part of the lumbar.  If you read the post before this one it will tell you some of the things I did. Supplements For Mgus/Mm? post

Not everyone has success I have had, but I have to be vigilent every day. I actually purchased those back heat wraps, they advertise for muscle and back pain, I kept one of every 24 hours, and changed it each morning. The package says only lasts a few hours but for me it worked that long. The heat did releive some of the pain. I, of course took Oxycontin and dilaudid, but that hardly touched it. The spine is the nerve center of the body so it does amplifiy the suffering. I sat in a chair half the day as I found it easier than lying down,  I hope the meds work for him. The natural supplement I took did help with the pain. I pray for his pain reduction and trust he can have some relief. We do understand how your family feels, It is terrifying to face your own mortality. take care MMS

On 4/4/2008 MCrow wrote:

First, thanks for this forum.   I've been watching it since September of last year when my father was diagnosed with Stage III MM.    To be honest, I was a little bit afraid of this place, because some of the information was so frightening.   But now I know, this is a terrifying disease.  

My father had extensive lytic bone damage at that point, although it was a mystery to me as to why it seemed to develop so quickly.   A year before he had been so healthy and happy.  

He began a regimen of Velcade/Dex/Cyclophosphamide almost immediately after diagnosis and was declared to be in "near Complete Remission" in January.  He seemed to have a good response to the chemo with minimal side effects.   The only problem was that pain medication and three kyphoplasties were unable to resolve pain in his lumbar spine.   To this day, he still has it--he has it all the time.   But those of us who love him could even accept that in the short term knowing that maybe he was beating this hideous disease.

But abruptly his doctors began to not sound so rosey, and more and more to leave my parents twisting in the wind.   So, this week we learned that he has a "virulent" form of MM and has a genetic deletion:  the p53 genetic deletion, which confers a very poor prognosis.

The doctors originally told us that he would probably have at least five good years, but he hasn't had a good month, if you consider the pain.

He has handled this so courageous, as as my mother, the primary caregiver.   This week was just so depressing.   They told us he was doing well, and that he had achieved near complete remission, but I could tell from the way the doctors seem to "back away" that something wasn't right.  And this week we found out what it was.

The doctors are at least going to take a closer look at his back and see what they can do for the pain, and he is to begin a maintenance regimen of Revlimid and Dex.

Anyway, just had to share that--to introduce myself and thank you for listening, and to see if anyone has any thoughts about my father's case.

Thanks for listening,

Mike