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Undergoing Stem Cell Transplant


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#1 scragporter

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Posted 23 November 2008 - 10:18 AM

My wife has had systemic scleroderma for 3 years and we went through various treatment options that concentrated on symptom relief, immunosuppressant, steroids and anti fibrotics but she kept deteriorating. Her lung function perfusion from fibrosis and skin contractures affecting hands, legs and mouth kept getting worse. We had enough of just treating the symptoms and the way the management of the condition was deteriorating. We researched stem cell transplantation both of us being nurses we realized the best option was to treat the cause of scleroderma with a stem cell transplant and fix the faulty immune system.

We contacted doctor Burt at the Northwestern in Chicago and visited the Mayo in Arizona we were offered a place in both trials. We read all the research and decided against enrolling in the scot trial as there is no cross over from the chemo side to transplant. The total body irradiation is off putting as it is linked to leukemia in the future. We are very glad to have chosen the treatment in Chicago as it follows the research already done as part of the Astis trial in Europe. We had a long battle with a medical appeal with blue cross blue shield and finally got clearance from the insurance to proceed. We got randomized to chemo initially and after completing it she switched over to the stem cell side as her skin scores were still deteriorating, we would not have been allowed to do this in the scot trial.

We are in the process of the stem cell transplant at the moment and all is going well there are other scleroderma patients at the Northwestern that are receiving the transplant but are to ill for the trial. The Northwestern and the immunology team are amazing I have worked in Hospitals all over the world as a Nurse and have never come across a center of excellence like this.

I will keep you posted on how things are going but for the first time in years we have a little hope for the future.

#2 Purr

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Posted 23 November 2008 - 10:40 AM

That's great. It sounds 'very' promising!!!! I'll be thinking of you both.

Hugs and best wishes,
Christy
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#3 canon

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Posted 23 November 2008 - 06:37 PM

scragporter,

Wishing you and your wife the best. Arriving at the decision you both have made sounds like everything was well investagated and your wife has found a solution which sounds very hopeful. Again the best to you.

With gentle thoughts,

Judy
A happy heart is good medicine.

#4 ozzy69

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Posted 24 November 2008 - 04:58 AM

scragporter,

Thank you so much for the update. Please keep us inform on how it going. My doctor has been talking to me about the Scot Trial. I am like you guys and don't like the fact that you do not get a choice. I think it is great that you guys are getting the chance to change things. I hope you guys get great results!

Hugs,
Nina Lynn

#5 scragporter

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Posted 25 November 2008 - 03:32 AM

Today we recieve an early Thanksgiving gift and Sharon gets her treated stems cells back free of scleroderma. Its called day 0 she has finished the chemotherapy and we now wait for the cells to engraft and build the new immune system. Her blood counts are high enough at present for her to walk around the Bone marrow Transplant unit with a mask on as the Northwestern has a reverse air system not only for the room but the whole BMT floor. Getting out the room if only briefly breaks up the monotony of the long days.

#6 janey

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Posted 25 November 2008 - 05:03 AM

What a great gift! It's so great to hear that she is doing so well! Thanks for the updates. She is definitely in our thoughts.

Big Hugs,
Janey Willis
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#7 Sweet

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Posted 25 November 2008 - 05:56 AM

Oh that is so terrific!!!
Warm and gentle hugs,

Pamela
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#8 epasen

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Posted 25 November 2008 - 06:13 AM

This sounds just great. I wish all the good to your wife and you! Emmi

#9 Peggy

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Posted 25 November 2008 - 12:26 PM

What a wondeful Gift! I hope that it continues to go so well. Please continue to keep us posted.

Warm hugs,

Peggy

#10 PrincessB

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Posted 25 November 2008 - 11:04 PM

That's fantastic news for you both, please pass along my best wishes to her. She's so lucky to be able to get out a bit, I went nuts in my isolation room!
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#11 scragporter

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Posted 26 November 2008 - 02:29 AM

Thank you for all your support I have read this site for the three years we have had to deal with scleroderma and it has helped us greatly. We never posted much as Sharon found it so hard to deal with the condition but peoples tips and treatment options we implemented. Peanut lives not far from us and she helped us.

Sharon got her stem cells back yesterday and she has had no reaction so far. Dr Burt is the worlds pioneer in stem cell transplantation and we are in safe hands. This is the news item about my wife from early this year before she got worse. See Video: Sharon Porter: Stem Cell Transplant for Scleroderma.

#12 Shelley Ensz

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Posted 26 November 2008 - 02:29 AM

How delightful! Please tell her we are all sending best wishes her way.
Warm Hugs,

Shelley Ensz
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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.

#13 scragporter

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Posted 26 November 2008 - 07:05 AM

Message from Sharon
Blast Off
Well I got my stem cells back all cleansed and revitalised and can now focus on getting my strength back and recovering. The risk of infection is most heightened over the next few days. Dr Testorie was there and a collection of nurses and made it a special occasion for me as they treat it like a birthday. They gave me a bag with goodies and a card signed by the nurses all that was missing was a cake don`t know if its on the special diet plan. My blood counts are what is expected at the moment but my glands in my neck are up and nausea is an issue. They are switching the anti biotics round and the anti emetics. Craig is keeping a close eye on proceedings and the phone calls and messages help.
All the best Sharon

#14 ozzy69

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Posted 26 November 2008 - 03:14 PM

Sharon,

Thanks so much for the update. I am so glad things are going well. It gives a lot of hope to people. Happy Holidays!!

Hugs,
Nina Lynn

#15 canon

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Posted 26 November 2008 - 06:00 PM

Sharon,

So glad to hear from you and it is wonderful for you to share your experience. Will keep you in my thoughts and your husband also. Care givers are very special people. Hope the glands and nausea settle down soon. Happy Holiday to you and yours and to the forum group.

With gentle thoughts,

Judy
A happy heart is good medicine.

#16 scragporter

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Posted 28 November 2008 - 05:28 AM

Happy Thanksgiving to all, we could see our boys on the web cam back home which made it special for us.
Well I am still Neutropenic which means I am susceptible to infection but each day is getting easier my glands have gone down and the nausea is easing with the new anti emetic and have started eating more. Generalized weakness and lethargy is an issue but I am still allowed to walk with a mask and gloves three times a day in circuits around the BMT unit. Another patient coughed when we were walking which made us panic and we both held our breath and walked in the opposite direction as fast as we could manage. We both have a germ paranoia Craig cleans the room down regularly with sani wipes and we both constantly wash our hands. The days are long but try and keep busy and prevent the boredom from becoming too much.
Cheers Sharon and Craig

#17 janey

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Posted 28 November 2008 - 06:10 AM

You go girl! Just love hearing these constant improvements!

Big Hugs,
Janey Willis
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#18 canon

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Posted 28 November 2008 - 05:49 PM

Yeh Sharon!!

They wouldn't by chance have a scrabble game there all nice and sterile would they or maybe a computer scrabble to help prevent cabin fever and boredom? What things do they have for you to do?

Caring thoughts,

Judy
A happy heart is good medicine.

#19 jefa

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Posted 29 November 2008 - 03:26 AM

Hi, Sharon and Craig. Just wanted to let you both know that you have been in my thoughts. This is exciting and scary business. I am just glad you are able to be together through this. Hugs to both of you.
Warm wishes,
Jefa

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#20 scragporter

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Posted 29 November 2008 - 05:31 AM

Hi,
Thanks for your kind thoughts another day towards a brighter future. I am already seeing some changes 4 days post transplant most noticeably the skin on my hands has started to soften and I can see wrinkles where it was taut before and my fingers are now able to extend further. I think a similar thing is happening to my face as I have a different sensation to my cheeks. The Occupational Terrorist/ therapist is working hard on my range of motion and the looser skin is wonderful to see. My leg swelling has vanished and seeing normal ankles for the first time in a long while. My breathing feels ok. My white cell count is 0.4 with no fevers I start neupagen shots again tomorrow to get the new immune system working quicker.

Thanks for the scrabble idea we have a lap top and the rooms are large with plasma screen TVs, films and also internet keyboard attachment and a pull out bed for visitors to stay. The 15th floor of the Northwestern yields me a striking view of Lake Michigan, John Hancock Tower and Oprah's penthouse in the water tower seeing the mist this morning covering the sky scrapers was very different to the vistas of Arizona. At night Craig says it looks like a scene from the Blade Runner movie.

Thanks for your words of encouragement.