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Update - Great News


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23 replies to this topic

#1 GocartMoz

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Posted 04 March 2009 - 02:25 PM

Hello Everyone,

I just returned from Durham, NC for my two year follow-up since my stem cell transplant back in March of 2007. I went through a battery of tests at Duke on Tuesday and on Monday I traveled to Wilmington, NC for an exam with Dr. Shanahan, who was the Duke Rheumatologist at the time I went through the study. I chose to have my follow up rheumatology exams with Dr. Joe as I think the world of him as a doctor and I also wanted my skin score testing to be with the same doctor as it is somewhat of a subjective test. I couldn't be happier with the results. To understand my excitement, a little history is necessary. When I was diagnosed with Scleroderma in June of 2006, my skin score was a 27. By the time of my admittance into the SCOT study in December of 2006, the score had increased into the 40's, the highest score being a 51. This was a sign my disease process was progressing very aggressively, thus the need for the transplant. It was great seeing Dr. Shanahan on Monday and even greater to hear him tell my wife and I that my skin score was now a zero. Yes, you read that right. It wasn't a typo. I am a "0," which my wife takes great delight at now telling me. In so many words, my skin is NORMAL. What a great trip. While I had been making trips every 3 months, I now only need to follow up every 6 months for the next 3 years. I just had to share the great news. I hope everyone else has had a good week, as well.

Dave

#2 Jeannie McClelland

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Posted 04 March 2009 - 02:33 PM

Woohoo! Yay!! What absolutely wonderful news, Dave. I am so thrilled for you. Tell the Missus to start the conga line - I'll join her just as soon as I put my shoes on. I know everyone is going to join in!

Long life and good health to you!

Biggest hugs of the day,
Jeannie McClelland
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#3 Snowbird

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Posted 04 March 2009 - 02:53 PM

Dave

That is absolutely wonderful news!!! I am sooo very happy for both you and your wife! I'm definitely in that conga line too but :o heaven help Jeannie as I try not to step on her heals ! :) :) :)
Sending good wishes your way!

#4 Cheryle

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Posted 04 March 2009 - 03:16 PM

Double WOOHOO Dave!! What incredible news!!!
Thanks for sharing with us.
Jeannie, I'm right behind you in the conga line... :)
Cheryle

#5 janey

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Posted 04 March 2009 - 03:50 PM

Dave,

This is absolutely awesome news!!!!! Congratulations! Time for a family celebration.

I'm next in the conga line.

Big Hugs,
Janey Willis
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#6 Margaret

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Posted 04 March 2009 - 03:55 PM

Hi Dave,

I love to hear *Happy news* !!! Congratulations!!!

Take care, Everyone.
Margaret

#7 nan

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Posted 04 March 2009 - 03:55 PM

Dave,
That is wonderful news! I am so happy for you!
Nan

#8 Shelley Ensz

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Posted 04 March 2009 - 04:00 PM

Dave, I'm trying to remember the last time we had such great scleroderma news in Sclero Forums. And the answer is "Never!"

You are the first we've heard of in the forums, I believe, to be doing so well and to have arrived at a skin score of zero. Huge congrats to you, especially after all you've been through. You have fought very hard for this!

Should we make you a sclero t-shirt saying, "I'm a big fat ZERO and proud of it?" Or should we all just get into the Sclero conga line for a Sclero Happy Dance that goes all the way around the world and back again?
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#9 jefa

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Posted 04 March 2009 - 05:46 PM

I couldn't be happier for you, Dave. This is absolutely wonderful news. :D
Warm wishes,
Jefa

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#10 Penny

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Posted 04 March 2009 - 08:23 PM

Dave,

What fantastic news!

Your story not only gives inspiration to others to take part in clinical trials but reminds us that every day advancements are being made that will (not might) one day lead to a cure!

I want to personally give you my thanks for bravely taking part in the SCOT trials to both you and your wife.

With that I am raising a glass in a toast to you... our Zero Hero!

Congas with the rest into a happy dance seen around the world,

Penny

#11 PrincessB

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Posted 04 March 2009 - 09:49 PM

That's such great news for you!

B x

#12 Lori-Scleroderma Spouse

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Posted 05 March 2009 - 12:59 AM

I am so happy for you and your wife as well as Dr. Shanahan. He needed some positive news. I think he took the loss of my husband almost as hard as I did. I agree with you that he is a wonderful person.

Keep smiling and rejoicing that you are beating this disease. I know your experience will help research work toward finding a cure for this disease. Congratulations and bless you.
Lori
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#13 debonair susie

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Posted 05 March 2009 - 04:36 AM

WHEW!!!

What a great thread to be able to read, Dave!

I share in the happiness about this great news.

I sure hope you and your wife went out for a celebratory
meal?!

Thanks for sharing!!!
Special Hugs,

Susie Kraft
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#14 ozzy69

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Posted 05 March 2009 - 05:44 AM

Dave,

Congrats, that is great! It is so nice to hear really good outcomes!!

Much Hugs,
Nina Lynn

#15 Peggy

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Posted 05 March 2009 - 06:53 AM

What a day brightener for me today! I couldn't be more happy for you! This has to be the best news ever and I am thrilled for you! It's like you have a whole new lease on life! How exciting!!!!!

Congratulations!!!!! You deserve it!

Warm hugs,

Peggy

#16 razz

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Posted 05 March 2009 - 07:57 AM

Dave,

Congratulations on the fantastic news! A zero skin score is the best results we've heard in quite a while. Thanks for giving us a Good News Day. Woohoo!!


Hey guys make room for me in that conga line!

Hugs,
Razz
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#17 Purr

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Posted 05 March 2009 - 09:18 AM

Congratulations Dave!!! I assume you plan on doing a big time celebration!!!!! Shelley's T-Shirt idea is great and I'll be right behind Razz in the conga line.

Christy
Love makes the world go around!

#18 WestCoast1

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Posted 06 March 2009 - 05:50 AM

Dave,

Thank you so much for sharing that very inspiring news! I am so overwhelmed with joy to hear that your skin is a 0.

Keep up the great work and follow that road to recovery.

Hugs~
erin
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#19 TJ903

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Posted 07 March 2009 - 04:45 AM

Congratulations!!!!

There is hope for us and you are our shining example. Many thanks for your help and inspiration for me personally.

My strongest hopes and dreams for you and your family- TJ

#20 oddone

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Posted 07 March 2009 - 07:22 AM

Dave - I am soooo happy foy you and your family!!
All those dark days seem to have paid off.
Congrats!
Your strength and those who have supported you is shining through!
Have a wonderful day!
Oddone - Spouse - 38 yr old Husband diagnosed October 2006, Diffuse Systemic Scleroderma
Normal PFT(July 06), ECG(Nov/06)