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Last Chance Appeal Hearing for SCOT


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#1 TJ903

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Posted 02 April 2008 - 09:26 AM

I usually just read everyone's posts to boost my moral and get my daily dose of vicarious hugs, but today I am frightened. Tomorrow at 1:15 I face a panel of seven who will decide whether or not I can participate n the SCOT study. Does anyone have any last minute advice for me? I've killed a bunch of bushes in paperwork and am prone to tears if I get frustrated, angry or just plain tired. I have letters of support from six of my various doctors but these two words "experimental and investigational" will be my downfall. They want information from sources they (my insurance) company deems worthy of considering and they will decide if it applies or not.

There is no time left for anymore research, my brain has shut down in mutiny and at this point I am ready to crumble... :(

Thanks to all who have saved me from my sadness on a daily basis! TJ :)

#2 truman

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Posted 02 April 2008 - 10:21 AM

TJ903:

I have no knowledge of the study that you refer to, but the tone of your post is tugging at my heartstrings.

Tonight you are in my thoughts.


TJ, what will be will be; we are given some heavy blows throughout these days and with this illness. Please be comforted that we are here for you. If you're up at 2,3,4 in the morning, post us because you know what? We're up too. and if you can't wait for the moderator to view the post, do a personal email. Mine notifies me when they come in.

You are not alone, please let us know the outcome. Thinking about you..

Linda
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It is what it is...........

#3 Guest_SADIE_*

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Posted 02 April 2008 - 10:31 AM

I wish I knew what to tell You. Please know that You are in my thoughts.
I hope things turnout well for You.
Sadie

#4 TJ903

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Posted 02 April 2008 - 11:44 AM

Thanks guys! :) especially for keeping me in your thoughts. That helps tremendously! My wonderful hubby has just informed me that regardless of what happens-we are going to Charleston, SC to MUSC for treatment with the SCOT trial doctors. It won't be the trial, but a slower course of treatment. At least it will be something, I just don't like this daily grind- just want it to go away....

Thanks again!! TJ

#5 Bunky

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Posted 02 April 2008 - 05:34 PM

TJ-

My thoughts are with you tomorrow. The SCOT study is so important, and has the potential to help so many. I truly hope that it all goes well for you!

Take Care,
Bunky

#6 janey

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Posted 02 April 2008 - 05:40 PM

TJ,
I hope you get a good night's sleep so you'll be alert for tomorrow. I'll have my finger crossed for you.

Big Hugs,
Janey Willis
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#7 LisaBulman

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Posted 03 April 2008 - 01:59 AM

TJ,
Good luck!! We are all rooting for you! Please let us know what happens...hopefully it is great news!

Hugs,
Lisa
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#8 Karenlee

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Posted 03 April 2008 - 02:24 AM

Best of luck to you TJ! Let us know how it went.

#9 Gidget

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Posted 03 April 2008 - 03:23 AM

TJ,
I feel for you. I was denied by the my insurance co. for the SCT at Northwestern. It was so frustrating and hard not to cry when talking to BCBS. I remember at the time almost feeling like BCBS was condeming me to die. I don't have any great advice for you. I know one thing we did was try to make sure that the BCBS consultant was a Rhuematologist that had good knowledge of sclero. Also, Dr. Burt at Northwestern had conference calls directly with the BCBS consultant/representatives in order to directly answer there questions. In the end I was denied based on the SCT being experimental, however, I felt that Dr. Burt did his best to get approval. In my case, because my companies plan was self-funded, the issue of medical necessity was not a factor in the denial -- just if the procedure was experimental. The only hope for me was if BCBS had approved someone else for a SCT in which case, they could not have denied me as the prior approval would have set "prescendence". But BCBS aren't going to readily give you this info, so unless you can come by it some other way -- maybe by going to court -- or if your doctor knows of someone with a prior approval, it will be difficult to get the info under the HIPPA laws. Good Luck. Wishing you a speedy approval. Gidget

#10 Sweet

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Posted 04 April 2008 - 04:55 AM

TJ,

No great words of wisdom, but I want you to know I'm thinking of you. Sending peaceful, content vibes your way.
Warm and gentle hugs,

Pamela
ISN Support Specialist
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#11 Shelley Ensz

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Posted 04 April 2008 - 09:48 AM

Hi TJ,

How did it go? Do you get to participate in the SCOT trial?
Warm Hugs,

Shelley Ensz
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#12 TJ903

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Posted 06 April 2008 - 06:55 AM

I've just gotten upright after spending a couple of days down and out. I've no more tears which my husband says is good because the more you cry the less you pee!!! They said we'll let you know in five days, but we already know the answer. I am here at Charleston, SC to see Dr. Brown to start treatment. My body is so rigid and my skin so tight, the pain is awful. Thankfully my husband used to work in a nursing home and can help with this stuff.

Thank you everyone for the uplifting comments- this group is the greatest. TJ

#13 barefut

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Posted 06 April 2008 - 08:55 AM

Just wanted to say I'm thinking of you TJ.

I'm glad you have a supportive, helpful husband by your side.

Take care and hang in there!

#14 debonair susie

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Posted 06 April 2008 - 09:57 AM

Hi TJ. It is so wonderful to have a loving husband who supports you and your decisions and has the knowledge to help with what needs to be done. With him by your side and your true internal fortitude... welll, that's a winning combination for you both.

I will hold you in my thoughts as you walk through this.

Soft Hugs,
Susie
Special Hugs,

Susie Kraft
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#15 Sheryl

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Posted 06 April 2008 - 12:03 PM

TJ, I was so happy to read that you went on to S. Carolina and started your treatments. Sometimes one would be willing to spend their life paying for the possibility of health, or at least a healthier body. I wish you the best and I hope this treatment series works for you. Keep us informed on your well being. I hope the pain can be brought to a minimun quickly. Small warm hugs sent your way. No more tears, unless they are tears of joy. Then you won't mind the puddles. Best Wishes.
Strength and Warmth,
Sheryl

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#16 Shelley Ensz

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Posted 07 April 2008 - 06:56 AM

TJ, I'm delighted that you got into the SCOT trial! For those of you wondering what it is, see:

SCOT Trial, which stands for "Scleroderma Cyclophosphamide Or Transplantation", will compare two potential therapies: autologous stem cell transplantation versus high-dose monthly cyclophosphamide. Study dates 2005-2008.

 


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#17 Sweet

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Posted 07 April 2008 - 07:16 AM

TJ,

Terrific!!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#18 Snowbird

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Posted 07 April 2008 - 10:09 AM

TJ

I'm happy for you too...hope those treatments start working quickly for you!!
Sending good wishes your way!

#19 GocartMoz

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Posted 08 April 2008 - 09:26 AM

TJ,

Congratulations on getting into the SCOT study. Best of luck with the treatment. Sending good vibes your way. Having gone through the study, I can tell you it certainly was worth it for me. If you want to discuss the study at all, don't hesitate to e-mail me.

Dave