Stem Cell Transplants

[mimi]

I am one year post stem cell transplant. I received my transplant at Northwestern by Dr. Richard Burt. My DLCO went from 45 pretransplant to 60 today. My CT scan shows "marked improvement" to my lungs. My skin score went from an 18 to a 9.
There are two main differences between the SCOT trial and the ASSIST trial. The Scot trial uses total body irradiation. (Radiation has serious long term risks, including Leukemia.) The other difference is that the SCOT trial does not have a crossover. With the ASSIST trial, if you get the cyclophosphamide arm and you do not see any improvement after 6 months, you can cross over to the stem cell arm. The ASSIST trial also has a much broader qualification range. Dr. Burt is pretty willing to "make acceptions".
I urge anyone who is seeking a stem cell transplant to realize that you have options and to do your homework. The SCOT trial is not the only trial out there.
I feel like a new person. A healthy person.
You can too!
Mimi

[Kamlesh]

Mimi,

 

Congratulations and thank you for sharing it with us. My rheumatologist did not think, I was a candidate for stem cell transplant. But, I know large number of members from this group can benefit. My DLCO was improved from 45 to 55% using Cellcept.

[Sweet]

Oh Wow Mimi!!! I was just thinking about you wondering how you were doing. I'm so very excited to hear this!!! Good for you!! I have tears in my eyes...this is so great.

 

Much love.

[Sheryl]

Good morning Mimi,

I am so happy the stem cell option worked out so well for you. It is good to hear that a year has gone by and you are still feeling great. I hope you continue this upward feeling of wellness. By going through this procedure and no longer being plagued with Scleroderma does the Gerd and some of the other complications ease up? Do the symptoms go away altogether or are you just no longer being constantly attacked by lung conditions, gastritus, body pain, esopogeal things? Anyone who has gone through a stem cell can answer this if they can.

[jefa]

Hey, Mimi - so glad to hear that all is going well one year on and that you have had such improvement. Sheryl has asked some interesting questions. I would also be interested in hearing the answers.

[Annie N]

I don't know about anyone else, but this sure gives me hope. Thanks so much for posting. And, yes, I'd also like to know if the other problems such as GERD, etc. improve?

:-)

Annie N

[mimi]

My Raynaud's has not changed. They told me not to expect that to. My GERD has improved, but I still take nexium. As far as body aches, mine were minor pre transplant and are gone now. I know 2 others who participated in the ASSIST trial who were racked with pain pretransplant and both are back to an extremely active lifestyle. I also have not had any colitis attacks since my transplant-I used to suffer from these at least monthly. My fingertip sensitivity is gone. I can make a fist. I can do buttons and open jars. My pigmentation is back to normal.

A lot of the symptoms of scleroderma are a daily irritant, but the transplant will help the ones that can kill you.

Mimi

[Sheryl]

Thank you so much for your reply mimi. I was always wondering exactly how the stem cell transplant effected related conditions of the disease. I'm sure this answer and others will help people make decisions and know some of the benefits that come with the option of going through the stem cell replacement process.

[peanut]

mimi,

Thanks for the encouragement. I am mid-transplant and also under the care of Dr. Burt. Hopefully my transplant will be equally as successful. :D

 

peanut

[jefa]

Fingers crossed for you, peanut.

[janey]

Mimi,

Thank you for sharing such great information! I did not realize the cross aspect of the ASSIST Trial. It probably messes up their data a little bit, but seems to be best for the patient.

 

I'm thrilled that the transplant was such a success for you!!! Sounds like you're back living a normal lifestyle but with just a few irritants that can be easily dealt with. Congratulations! Thanks again for sharing!

 

Big Hugs,

[nan]

Mimi,

That is great news!!!!!!!!!! I am so happy for you. Thanks for sharing here. It gives all of us hope.

Take care,

Nan

[mimi]

It does mess with the data a little bit, but as Dr. Burt said--yes, data is important, "but I'm just trying to save people's lives". He truly is an amazing person, as well as an amazing doctor. I know he would be willing to speak with anyone interested or curious.

Mimi

[smac0719]

This is really great information and I too am greatful taht you've shared it with us. I suffer daily, but not to the extent of others. I am glad to know that there is a potential option for me.

[Snowbird]

Mimi

 

This is wonderful news that you are doing so much better...and really good of you to share your experiences with all of us. I hope you continue to improve daily.

 

Peanut, you know I'm rooting for you too! I hope you're doing well.

[PrincessB]

That's great news for you! I had my stem cell transplant in September and have had good results so far. My Raynauds attacks have actually improved, I definitely get less than last winter and I haven't had any ulcers this year (thank you, thank you!). My skin score has gone from 15 to 8, and the scarring to my lungs had completely disappeared when they did the scan in January. I didn't have it that badly though, they caught it very early. I will be having the full battery of tests done in July, but I'm not sure when I'll see the specialist afterwards. Whenever it is, I'll let everyone know what they say.

 

Good luck Peanut, keep us posted.