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Denelle

Funding Came Through

24 posts in this topic

Hello,

 

I got word today that I have funding to get a stem cell transplant!!!! Yeah!!!!! :lol: I have been waiting for almost a year. I am so excited!!!!!!!!!!!!!!!!!!!!

 

I don't have a lot of details yet, but am thrilled to the gills!!!!

 

Denelle in MN soon to be temporarily living in Chicago... and becoming bald. But it's worth it!

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YIPPEEE!!!!!!!!!!!! CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!

 

I am so very, very happy for you and so excited for you!!!!!

 

Warm hugs from Minnesota,

Peggy

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I am so trilled for you. Bring a hat for your baldy head.

Will you be staying at the Seneca?

Are you getting the allogeneic (sibling) or the autologous (your own) stem cell transplant?

 

Also soon to be a transplantee - HOPEFULLY,

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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I'm excited for you too...that's wonderful exciting news!! Wishing you the best!

 

Ramona


Sending good wishes your way!

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Fantastic news, Denelle. Peanut is right--bring your hat, warm gloves AND mittens, warm socks...warm everything!!

 

I'm really happy for you. As I told Peanut, a woman I know had her transplant at NW. She is doing great now. Keep us posted.

 

All the best to you,

 

emmie

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Denelle, That is awesome!!! Good luck with everything we will be thinking of you. Let us know when this is going to happen. sam,


Sam

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Denelle and Peanut ,

 

I am so happy for both of you and will keep you in our thoughts. I am still amazed at the progression of disease in one person versus another and I'm

very thankful that the Plaquenil works for Gareth.

 

Take care, Everyone.

Margaret

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Hi y'all,

Thanks for all the warm thoughts. I will be getting an autologous stem cell txc. I have been waiting about a year - so this is like an early holiday present biggrin.gif .

I did PFT's today and they are the lowest ever - it is about 1 year since I stopped taking cyclophosphamide - so I relapsed. I am very glad to be getting this transplant and even a bald head doesn't scare me.

I will keep you all posted as I go through the process.

Denelle In MN cool.gif

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Hi

 

Humnn...I have to ask because I do not know anything about these stem cell transplants and would appreciate understanding them better. How is it that you can use your own stem cells (ie, are they not part of our problem entwined with Scleroderma)?? I guess I'm just trying to figure out how our own cells can help vs a siblings healthier cells....unless our stem cells are healthy/not affected and are not part of our health problem? Can anyone explain that to me please?

 

Thanks, Ramona


Sending good wishes your way!

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Denelle,

This is HUGE! You can do it! I'm with you about the hair. Do you remember Melissa Ethridge when she was bald? It was fantastic and very empowering.

Just stay warm. I hope all the best for you.

xo,

Tangelo

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Ramona,

The stem cell transplant will allow her to restart her immune system by essentially giving her a new one. The hospital will give her a medication that will cause her bone marrow to produce baby infant stem cells, which are cells that haven't decided what they're going to be. It's so fascinating - the whole body is made of stem cells. Then, they will remove her stem cells and clean them removing anything the doctors’ think contribute to scleroderma. Chemo and immunosuppressants are given to kill the "broken" immune system then the new cleaned stem cells are given.

 

Sibling vs. one's own stem cells? Well that's one the doctors are trying to figure out right now. A sibling transplant is more expensive and has a slight chance of rejection - for only 6 months. Also your siblings have a 1 in 4 chance of being a match.

 

It's a very interesting process. Hopefully this research will provide answers for us.

 

hope & health,

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi Peanut

 

Thank you for the update, I had no clue....it really is interesting and certainly sounds promising for research, etc. I wish you so much luck with this!!! Ramona


Sending good wishes your way!

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Ramona,
Peanut gave you a great explanation of stem cells.

Stem cells are "blank cells that do not yet have a specific function. Under proper conditions, stem cells begin to develop into specialized tissues and organs.

About Stem Cells and Stem Transplants ISN The Q&A article is very interesting.
It's all very interesting

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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Congrats, where are you having this done, northwestern University? There was an article in a popular magazine about a woman who had the transplant -- she is doing fine today.

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Peanut

 

Thanks so much for telling us about the Stem Cell transplant. I knew nothing about it and your explaination was great!


Take care and stay warm,

 

Michelle

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Hi y'all,

 

I wish I had more news, but alas I am still waiting for final monetary negotiations to be completed. I always hope that it will happen the next day.... and I yet I am still waiting.

 

I hope once I hear that the negotiations are finalized that I will get appts right away. I just had a thyroid ablation and according to my MN doctors they won't do the transplant until my TSH is normal, so I hope that happens quickly.

 

Thanks for the good wishes, I will keep you updated.

 

Denelle in MN B)

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