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Biomarker for Diffuse Scleroderma skin has been discovered!


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Stem Cell Transplant - I Need Your Good Thoughts


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#1 peanut

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Posted 16 December 2007 - 02:00 PM

Hi friends,
Well I’m back. I enjoyed Chicago's cold and the Wyndham's cozy beds, but it's always good to be home. My mom came into town the day after I got back from Chicago and she's been doing all the things I can't around the house, like clean the shower. Arizona has horrible water, so shower really needed it.

Well back to Chicago...
Day 1:
I had a pft & dobutamine echocardiogram with bubble study. I couldn't eat or drink till these tests were done, which was 3 pm; and with sjogrens 3 pm means lots of cottonmouth. After I ate the most delicious club sandwich.

Then, I saw a pulmonary doctor. He said he'd there are risks but recommend me for the study.

Day 2:
I had a CT Scan and I saw a rheumatologist who basically does screening and outpatient work for the stem cell/scleroderma program. My Rodman skin score is 20, not too bad but just enough to qualify for the study. He told me I’ve probably had scleroderma for 12 years: 10 years as a “free bee” and 2 years active. This makes sense as symptoms, like raynauds started at 16 then my sclero flared about 2 years ago. I’m 28 years old now. I asked him how bad I was. Doctors can never give you a straight answer. He said I am in the high-risk group for further advancement and I have 2 indicators of poor prognosis: 1. Tendon rubs & 2. Diffuse scleroderma.

Lastly I saw the main doctor, the hematology doctor who runs the stem cell program. He looked at my rough numbers and said basically my lungs are even worse than I thought. He needed to review my CT scan and consult with his colleagues’ cause my lungs are beyond the parameters of the qualifications; however he knows I have very limited options.

Hopefully I'll know if I qualify later this week.
Please send your good thoughts.

hearts & health,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#2 janey

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Posted 16 December 2007 - 04:37 PM

Welcome home Peanut!
Thanks for the update. It sounds like you had a very busy couple of days, but extremely productive. I am sorry to hear than some things were worse than you thought. Twelve years - how can they determine something like that? Interesting. Hopefully, now that they know how things are, they'll do something about it. I will keep all my fingers and toes crossed for you to get the transplant or at least get a treatment that will stop the progression.

Lots and lots of hugs to you Darlin'!
Janey Willis
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#3 aniwallar

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Posted 16 December 2007 - 04:50 PM

Peanut:

What made you decide to go for something like the stem cell transplant? That sounds huge...
How did the doctor find out how long you have had the condition? Looking back, they were plenty of times that I felt something was wrong but I never went to find out.
If the transplant is going to make you better, I really hope it works for you, or at least they can give you some kind of treatment that will make you feel better. Please keep us posted.

Ani

#4 peanut

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Posted 16 December 2007 - 06:07 PM

Hey Janey,
Well I guess this rheumatologist in Chicago sees quite a few scleroderma patients. I think it's a tendency or theory that some patients get a "free bee" before scleroderma becomes active.

Ani,
Um well after a year of treatment & failed Imuran treatment I'm not well off. My rheumatologist said: cellcept, stem cell or repeat cyclophosphamide. I chose cyclophosphamide cause I knew it would help but it's not a good long term solution and to research stem cell. I didn't choose cellcept because I was afraid it might fail like Imuran. I will look into though if stem cell doesn't work out. It was good that I did with my lungs being as bad as they are. If I would have waited I may not have qualified for anything. If you wanna know the whole story PM me.

peanut



You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#5 barefut

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Posted 16 December 2007 - 08:14 PM

Wow peanut!

I've been out of the loop. My thoughts are definately with you! You sound amazingly positive and upbeat in the face of all this scary stuff.

I would love to hear your "whole story". If you're up to it, why don't you post it for all of us to read? I'm sure it would be very informative and educating.

So, did he tell you why tendon rubs are a sign of poor prognosis - or do you know? I think that's interesting...

I'm so glad your mom is there to help you.

Take care and keep us posted.
Love ya,
Barefut

#6 peanut

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Posted 17 December 2007 - 12:31 AM

Barefut,
I never even knew what a tendon friction rub was, nor did I think the clicky sound my feet made when I pointed my toes had anything to do with sclero. Wierd. He wouldn't have even known that my feet do that till I said something near the end of his physical exam.

BTW, you'd love our holiday tree right now - its decorated in all Seahawks ornaments. My mom brought us down all the Seahawks ornaments she could find. We have to add a few other ornaments the tree to fill in the empty spots though... maybe next year it will be all Seahawks.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#7 peanut

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Posted 17 December 2007 - 02:18 AM

Oh I forgot something I learned... I asked the rheumatologist if Scleroderma was a disease of fibroblasts being out of control and producing too my collagen and he said yes. Hum... He said that people with scleroderma heal nicely... which maybe true when you're not on prednisone like me.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#8 epasen

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Posted 17 December 2007 - 03:01 AM

Peanut,

my thoughts are deffinetly with you right now :) I really hope this all will turn out well! I'm really glad about your update, it's nice to hear you got back allright.

Emmi

#9 Sweet

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Posted 17 December 2007 - 04:53 AM

Welcome home!!

Sounds like a very thorough program! You are a trooper! Sorry to hear some things were a bit more advanced than you thought. I know when I was diagnosed my doctor said I had probably had it going on for about 3-4 years after reviewing my chart and seeing the complaints I had over time.

I will keep my fingers crossed for you. I hope this all works out to your advantage!
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#10 lizzie

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Posted 17 December 2007 - 05:00 AM

Hi Peanut, glad you got back safely from Chicago - I have just been watching T.V- the news here is showing lots of pictures of snow in the US. Will be hoping and praying that you get good news re the transplant.

Barefut: there is a study that has looked at the realtonship between tendon friction rubs and outcome in systemic sclerosis. PM me if you want details of it.

Lizzie

#11 Snowbird

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Posted 17 December 2007 - 12:00 PM

Welcome back Peanut!!

Sending good thoughts your way for all your wishes.....I too find it interesting that Scleroderma patients apparently heal nicely.....very interesting/curious indeed (as it appears that I am just the opposite :unsure: ).

Hope you get caught up on your rest now that you're back.

Ramona
Sending good wishes your way!

#12 Sheryl

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Posted 17 December 2007 - 03:36 PM

I don't heal nicely. Infact most of my scares have healed keloid. I may heal to fast but not prettily. Sheryl
Strength and Warmth,
Sheryl

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#13 Clementine

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Posted 17 December 2007 - 04:24 PM

Peanut,

I'm always sending you good thoughts, but how about some extra good thoughts right now!!

About the healing...I definitely don't heal fast. It could be the Cellcept...who knows anymore.

Peanut, I am interested in tendon rubs. I have never even heard of them. I am always popping. Mostly my ankles, but my wrists and knees too. I never thought much about it. Ugh. No pain though..so maybe it's just age.

xxoo,
Tangelo

#14 emmie

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Posted 17 December 2007 - 06:59 PM

Hi Peanut,
ARe you going to Northwestern? I assume you are...I know of a woman who had a transplant there. She is doing terrific!

Keep us posted...and all my best wishes.

xoxo emmie

#15 peanut

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Posted 18 December 2007 - 04:30 AM

Yes emmie, it is Northwestern.

It appears that they are going to accept me, but I was told I can be denied at anytime based on new information that may come in during work up. Hooray for now.

Thank you for all your good thoughts... hopefully it will be smooth sailing from here.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#16 peanut

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Posted 18 December 2007 - 10:57 AM

Tangie asked me... so I'm accepted, now what?
Good question.

The answer is: wait. Hahhaha. They have to process my insurnace and write a letter to my insurances to see if they will cover the procedure. The insurance lady said they cover all or nothing.

This can take some time especially since my primary insurance is suspended because they rejected my claim pending further proof of my condition. I faxed the proof but it takes 24-hours blah, blah blah... (silly insurance always takes forever) but I have a second insurance so who knows how it will all work out... but it always does!

Basically once we get money we can start the actual process.

Here's to no problems with paperwork or my work-up!!!

hearts, peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#17 aniwallar

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Posted 18 December 2007 - 12:12 PM

Hi Peanut:

I want to hear all about it and it seems like more people also want to hear it.
When you have time, sit down and write your story.

Wishing you a good day,

Ani

#18 peanut

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Posted 05 January 2008 - 02:54 AM

Hey friends,
Here's the update:

Last week I was told me this week I'd get an answer and this week they're telling me the insurance company is leaning toward yes, but can't answer for sure till they come up with a money figure. So I can hope for an answer regarding the approval of my stem cell transplant Monday or Tuesday.

Well here's to hoping...

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#19 Sweet

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Posted 05 January 2008 - 06:14 AM

Hey Peanut,

I'm sorry the decision is dragging out. The waiting must be so hard. I will keep my fingers crossed for you!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#20 lizzie

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Posted 05 January 2008 - 07:07 AM

keeping mine crossed too.
Lizzie