MDS and my bone marrow transplant

[Dandy Sandy]

I've been through the Vidaza chemo treatment and although it helped stabilized me, it wasn't improving my condition. I am now in the hospital starting the bone marrow transplant protocol. I have a web site that journals my experiences and I welcome you to look at it and also share your journey. My blog is http://dancinintherain.org.

[Birgitta-A]

Hi Sandy,
Thank you for your blog - you seem to be so brave!
Kind regards
Birgitta-a
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, 2 injections Neupogen/week for low WBCs

[Dandy Sandy]

or something like that. I was an exchange student in Sollentuna for 1965-1966 and loved it. I still have family there and email her often. I had low WBC's ( 2.0) and platelets (35) and funny RBC's. They dropped even lower and we decided to have a BM transplant consult last Nov. Since my counts were dropping and chemo was barely maintaining me, and I was fortunate enough not to need RBC or platelet transfusions, we decided to proceed with the transplant. It took about 4 months to go through the process of finding a BM donor and preparatory blood and insurance work. All is going as expected. Most days are good, but I have a meltdowns as needed. Thanks for your comments.

[tytd]

Hello Sandy,
Welcome to Marrowforums and a whole new bunch of friends to root for you. Your blog is very inspiring and I'm sure I speak for all the other MDS patients out there in thanking you for sharing your difficult and rewarding experiences. It makes it a little easier to know that we are not alone. You are "making a difference" and I wish you the best of luck. tytd

[Dick S]

Hang in there Sandy. Everyone of us with this stinking disease can relate to everything you say and feel. Only those of us that are going through it can really understand and some days even I don't understand it, others can only try.

Great blog and keep us posted.

"ONE DAY PEANUTS, ONE DAY SHELLS"

[Birgitta-A]

Hi Sandy,
Yes, you managed to get the "thank" you correct! Good that you liked the year in Sweden.

Hope you will manage well with the SCT ! I think many members of this forum are doing much better than the statistics shows - probably the patients get better supportive therapy during the whole process today.
Kind regards
Birgitta-A

[squirrellypoo]

Hi Sandy.

Oh it's so nice to have another trransplantee here! There are five of us here who had ours this summer, but no one since then. What day are you by now?

I had the same sort of MDS as you (hypoplastic) and it seems to be the best one to have if you're going in for a transplant. The last 8+ months have been rough for me, but I'm in a much much better place now than I was last year this time. I saw the Dr today and he said my Hb (14.1!) is probably higher than his right now.

Be strong and get through these next few months and you'll be planning your first anniversary before you know it, wondering where the time went!

melissa

(PS: Sandy is my mother's name, so you've already got me smiling!)

[Jill2008]

Hi Sandy,
You are not alone. My case seems to be a little similar to yours. I also have hypocellular marrow and my platelets and WBC's have been affected most, but I feel my hemoglobin is dropping too because I am becoming increasingly short of breath. I have been to the point of starting pre-transplant testing twice now and then my counts stabilized putting the SCT on hold. In a way I'm glad to have more time, but on the other hand it is frustrating to get to that point and then have to wait. I have another appt at Stanford on Friday and with the new finding of Monosomy 7 in my lastest BMB, I may be headed to transplant very soon. I will continue to follow your blog. Know that you are in my thoughts and that I am in this fight right alongside you. Be stong!
You can follow my journey at carepages.com/jillsjourney2acure.
Jill