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scragporter

Undergoing Stem Cell Transplant

69 posts in this topic

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.

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

 

Hugs and best wishes,

Christy


Love makes the world go around!

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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.

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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

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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.

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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

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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

 

Warm hugs,

 

Peggy

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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?!)

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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.

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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

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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

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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.

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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

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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.

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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

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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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.

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Hi Sharon and Craig,

So happy to hear all is going well. Can you please tell me what are the numbers you are looking for in your blood work. Is it white blood cell count only? Also what are they now and what do they need to get to before you can go home? Just checking against the high dose Cytoxin number I have.

thanks


Lucy

Diffused Scleroderma

Diagnosed Dec/06

First Sympton Nov/05

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Wow, that is great news!!

 

Thanks for keeping us posted and sharing your experience. I love reading this thread and finding good news everytime!! It makes my day and I'm sure gives a lot of hope to all of us in the forum!!!

 

Warm hugs to you and your husband!!!

Ana

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Hi Lucy,

Dr Burt is very cautious with his patients and insists on coming in every day to review what’s going on we even have his cell number if we need anything. He draws labs daily unless we have a fever or other abnormality.

The labs that are drawn every day are a renal panel CMP which monitors electrolytes like potassium and magnesium these are replaced as needed. The other lab is a CBC or complete blood panel which monitors the red, white and platelets cells. A hemoglobin part of the red cells are checked for anemia a number above 9 is good we dropped once down to 7.8 and she had two units of blood which are specially treated. Sharon’s platelets are low a normal count is above 100 this is normal post transplant these deal with clotting Sharon is careful when brushing her teeth these have yet to need replacing. The white cells which fight infection are counted as part of the CBC a normal white cell count is 4.5 -10 , 4500-10,000 white blood cells/mcL (cells per microliter) Sharons count today is 0.1, Neutropenia is when the neutrophil or the weight cells that eat infection are below 2000. Sharon’s are too low to count so you have to be a germ a phoebe and wash your hands all the time. The Northwestern has a reverse air system for the whole floor as well as individual rooms usually most BMT units have only individual room and you are isolated more we get to escape for walks three times a day. When you enter the department you come through it seems an air lock with two sets of doors neither will open without the other being closed first. It’s like a scene from 2001 a space odyssey without the space suit you get gloves and mask instead. Sharon’s doing well today no fevers and her appetite is coming back and she is feeling a little stronger. We keep marveling at the visible changes to her skin and the simple things she can now do that were difficult before.

All the best Craig and Sharon

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Thank you Craig and Sharon for sharing your info. I am just at a point of starting to consider/investigate Stem Cell. It is an option available to me. I understood all the info and numbers you provided Wow is all I can say at this moment. I got the message you really need to pick your facility.

Thanks again so glad to see you are a team working together to get through this.


Lucy

Diffused Scleroderma

Diagnosed Dec/06

First Sympton Nov/05

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I sent you a private message with some questions. I just want you to know how happy I am for you that things are going so well. I hope that it continues to get better each and every day and that you will get stronger and continue to see such great results. You are blessed. Thank you for keeping us updated.

 

Warm hugs,

 

Peggy

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