New to all of this!

[russellb]

This has been a long year since my diagnosis. My daugher, Txnmomma, introduced me to the message board. Am I any different? After 30 years of professional counseling I do not know how to move myself ahead. This is the first time I have hit a real brick wall. Dont’t know where to go from here.

Russ

[covergirl]

Welcome Russ,
I just joined this forum yesterday and found it to be full of wonderful friendly folk willing to share so much about MDS. As I am newly diagnosed, I’m sure I will be more of a taker than a giver for awhile.
But based on my 24hour experience, I encourage you to vent/share here as much as you need to..someone will make you feel better.
As trite as it may seem, take it one day at a time and keep your head up.

[sarah]

Hi Russ, welcome to forum. You are not alone with this diagnosis. We are here to help each other and educate ourselves as we go together. You will find a wealth of information from everyone. Take things one day at a time.
Take care and keep us informed.
Sarah

[Suzanne]

Russ, all of us with this disease or caring for someone who has it, probably feel like we hit a brick wall at one time or another. That feeling can be aggravated by the meds used and I by the disease itself-especially when counts are low . Sarah is right, take a day at a time and enjoy something in each day. Unless you have complications, My understanding is that RA is the least serious form of the disease, least likely to progress to AML and the easiest to live with. I have forgotten whether your daughter has told us what problems you are having and whether you are being seen at a center of Excellence or by a Dr with a lot of experience with MDS. There have been so many developments in treatment in the past few months that we all have alot more hope. MD Anderson in Texas is a center of excellence and does a lot of research and trials. The drugs they have started using since Thalidomide have a lot less side effects for many patients.Those side effects would have had me hiding under a bed somewhere! Hang in there and let us know more particulars about where you stand now.

[Suzanne]

Russ, I found in some of my notes that the revimid they are so excited about is an “analog”-whatever that means-related I guess- of Thalidimide. Supposedly with a lot less side effects.

[Terri]

Welcome Russ, You will find so much support here.

[Marsha]

Russ,

Welcome, when I first was dx’d I had CMML, I thought what is this, never heard of it. I researched it found the MDS foundation and this forum and tho I don’t come here as often as I used too, it is amazing how many new people are here now since I came. Please feel free to talk about anything, the fear is real and even tho we can’t cure it we can offer lots of support.

God Bless, Marsha

[shirlsgirl]

Hi Russ,

Welcome! This is a great place to come to vent, to get support from others who understand, and to learn everything there is to know about current treatments etc…

How are you doing? Is BMT/SCT an option for you?

Jody

[txnmomma]

Well I post on this site too.. hehehe :p

russellb [RUSS] is my dad and he is finally posting here. As a supporting family member to him, this site has helped me in tons of ways!!

Quote:

Is BMT/SCT an option for you?

I dont know what to speak for him.. but I believe this is an option, but not an option right now. Something to think about DOWN DOWN the road. *shrug* We’ll see what his response is..

Just to add: I am really proud of him and that he is posting here. Dealing with MDS and having some support go hand in hand..

[Kathryn]

Hey Russ,

this is such a wonderful source of support and information.

From what I have seen w/ my father… moving ahead will come. It is a lot to swallow. As I have told my dad, behind the darkest of clouds the sun is always shining…. Focus on the positive.

Best wishes to you,

Kathryn

[shirlsgirl]

Hi Wendy,

Awesome that your Dad is on the board too!

Take care,

Jod

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