Dad recently Diagnosed

Hello Everyone,

My Dad was recently diagnosed with MM last month.  He is 62 years old, 160lbs, and was lifting weights and running 3 miles every other day until the symptoms started showing.  He noticed he was getting really tired, and had low grade fevers off and on. He went in April to find out what was going on and they found he was anemic.  Further tests were run and here we are with this diagnosis of MM.  We haven't been given a stage yet.  The first couple of appointments we were told that his numbers "weren't that bad" and we could probably go with Stage 1 and watch and wait.  The most recent appointment we were told that his complex chromosome abnormalities weren't very favorable, and he is osteopenic, so we should start treatments sooner rather than later.  We located in Maryland, are seeing the Myeloma Specialist at Johns Hopkins tomorrow to get a second opinion.  His regular oncologist wants to start him on Velcade/Dex and then Zometa once a month and eventually do the SCT.  I recently got copies of all of his labs and in the process of trying to understand it all.  He hasn't been active in trying to learn about this and I want to find out as much as I can to help.  It's almost as if he is still in denial.  I do understand that and hope in time he will really get involved and learn as much as he can too.  I will get his numbers and hopefully post them soon to get some feedback.  I guess I just to see how everyone else has delt with the initial shock of this, and how to get my Dad to stand up to this thing, educate himself and be ready to fight.  Thanks everyone!

From Anna,

Hi Kristi, Welcome to the group. These 2 links should help.  

http://myeloma.org/

http://www.multiple-myeloma.com/

Dad has had MM for a little over 11 years.  He's had 2 Stem Cell Transplants that put him in remission for about 5 years.  He's not in remission any more.  Been on the chemos your husband is going to take.  And a couple of others over the years.  Like your husband Dad was a runner and avid exerciser before he got sick.  This was a man that never got sick. Before they told him what he had he got pneumonia 4 times in 2 years.  Had nose bleeds and had pain he thought was arthritis.  He's doing pretty well considering all he's been through.  I won't go into everything now.  This should give you the gest of his situation.  He's been on pain med's for years. He's one of those people that can take pain med's and still function. It took a while to figure out how much to take so he could function.  Oh yeah it took him 3 doctors before he found one that would treatment him aggressively like he wanted. He was 3 days from his 55th birthday when he found he had MM.  He got it from Agent Orange in Vietnam. As things go along and you have questions or just need to vent don't hesitate to.

Your friend,

 Anna

Hi Kristi Marie,

  I just sent you a personal message as my "fella" and I are just starting this path a bit ahead of you.  This is the absolutely most helpful group of folks and I encourage you to get connected to "the family".  AMW

Good Evening Kristimarie;

The most recent appointment we were told that his complex chromosome abnormalities weren't very favorable.

Please explain. 

I recently got copies of all of his labs and in the process of trying to understand it all. 

Please post them when you have a chance. 

He hasn't been active in trying to learn about this and It's almost as if he is still in denial.

That's understandable. Any chance he might join us here at CC?

I guess I just want to see how everyone else has dealt with the initial shock of this, and how to get my Dad to stand up to this thing, educate himself and be ready to fight. 

Most of what you describe is intrinsic. It all depends on how soon HE wants to get back running those miles. I would suggest you encourage, but don't nag, him to join us. He'll find all you mention here at CC. Besides, it's better than watching T.V.

As Anna has already stated, welcome! You're only a stranger here once.

Take care;

Kevin

Hi Kristenmarie,

Welcome to the group! You will learn lots here!  Gayle

Anna, AMW, and Kevin,

Thank you so much for your kind and encouraging words.  I will try my best to get my Dad to join this board.  I know he would benefit so much from this type of communication outlet. 

Kevin - I wish I could explain.  We are all confused about these chromosomes.  That is what prompted his first doctor into wanting to start treatments.  The specialist we saw at Hopkins yesterday was even stumped.  He said he had to call his friend at Mayo who has been involved in the development of these cytogenetic studies to try to get a better understanding.  He said technically, on paper that my Dad was Stage I, but with these chromosome abnormalities he wasn't sure what to do.  He had deletions of 13 and 17, and additions and rearrangements of several others.  So we are waiting to hear back from him.

I will post the numbers hopefully this evening.   I had the specialist explain some things to me yesterday but it would be great to hear your input too as there is so much I still don't know.

Thanks again for the support!