[inky100]

Allo stem cell transplant for treatment-related MDS

by inky100 on Fri Oct 17, 2014 1:52 pm

Hello everyone,

I have been diagnosed with treatment related myelodysplasia (MDS). I've been told that the donor stem cell transplant is a possible cure for MDS. I was just wondering if anyone on this board has any personal experience with the allo stem cell transplant that they would be willing to share.

To be honest, I'm terrified of the donor transplant, so anything anyone could share with me to help me make my decision would be greatly appreciated.

Have a great day, and God bless,

Mary

[Mark11]

Re: Allo stem cell transplant for treatment-related MDS

by Mark11 on Fri Oct 17, 2014 3:51 pm

Hi Mary,

Here is our latest discussion of allo transplant.

"Allo transplantation - what are your thoughts?", Beacon forum discussion started Sep 30, 2014.

Not only is there a Myeloma Beacon, but the good folks that run this site have an MDS Beacon. Here is a link to a column written by a patient that was hopefully cured of MDS.

Ann Smith, "Living With MDS: The Start Of A New Life, Without MDS," The MDS Beacon, Jan 25, 2013.

Here are a couple of sentences from that column that "sum it up" perfectly, IMO

Now that it has receded two years into the past, I can honestly say that while it was difficult, it was not impossible and the struggle was worth it. For what price can you place on life?

My life is now quite normal in all of the most important aspects. This is an unimaginable end to a 20-year story."

I did my allo 8 months after diagnosis, but it is amazing how my life is back to what it would have been if I had never been diagnosed with high risk myeloma.

Robin Roberts has done numerous interviews about her experience about her allogeneic transplant for MDS. Just watch GMA one morning and you will see how great she is doing. My experience is very similar to hers.

Good luck if you decide to do the transplant.

Mark

[inky100]

Re: Allo stem cell transplant for treatment-related MDS

by inky100 on Sat Oct 18, 2014 4:02 pm

Hi Mark,

Thank you for your response. I wasn't really aware of this part of the forum. I haven't felt like exploring very much yet, but you can be sure that I will. Again, thank you.

Have a great day,
Mary