Skip Navigation

About this group

Information

  • Public, Open Access
  • All Journey Phases; Myelodysplastic Syndrome
  • Myelodysplastic Syndrome Support Group

Join Group Members

View all 43 members

Upcoming Events  

There are no upcoming events. Use the links above to add some.
I'm ForrestB, and I'm a survivor of Prostate Cancer
Looks like MDS is pretty rare. We are actually going up to Rutgers in New Brunswick tomorrow for a 2nd opinion from Dr. Schaar. The hematologist down here in our part of NJ (closer to Philly) doesn...
2
  • Mon May 13, 2019 · Like1
I'm JoMac53, and I'm a survivor of Myelodysplastic Syndrome
Hello. Is this an active message board? My name is Jo and I have MDS-EB1. Going for eval by Rutgers Cancer Institute of New Jersey (RCINJ) transplant team at Robert Wood Johnson (RWJ) New Brunswick...
1
  • Thu Apr 12, 2018 ·
Hi, I'm WILLIAM H.
I have had MDS for 1.5 years. I have yet to locate an MDS support group in Georgia. Yes I know that there are some national groups and some web groups. I am exploring the possibility of orga...
1
  • Sun Feb 7, 2016 · Like1

CC

Hi, I'm Clifford P.
I am 71 and was diagnosed 18 months ago. I started Vidaza (5 days a week every 23 days) in Feb. 2017. I have now had 15 infusions. I have not had to have any transfusions since my counts have no...
2
  • Sun Apr 15, 2018 · Like1
Hi, I'm Barry P H.
Now that your results showed "remission", how did this affect your schedule of vidaza? Did you get to go longer than 4 weeks before you had to begin your 11th dose?
5
  • Tue Jul 26, 2016 · Like2

MDS

Hi, I'm Clifford P.
Toady I had my second blood work since my first Vidaza treatment. Platelet count was up, RBC was up, WBC down a little. I'm happy with the results.
19
  • Mon Mar 20, 2017 · Like4
Recommendation
Created Nov 28, 2012
We found this useful when talking with the doctor.