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Old Fri Nov 3, 2017, 05:19 AM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 174
MDS post transplant 5months

Updating everyone on the forum, I hope you all are enjoying this wonderful weather.
I met with my hematologist on Thursday.
My numbers post 5 months SCT are:

WBC 5.9
RBC 3.41 L (Hgb 10.7 L)
Platelets 114 L

I was diagnosed last year in August, and took the watch and wait approach, I never did Vidaza or Dacogen, the doctor just said your MDS is not acute, so we will wait and then do the transplant when the timing is right. So I waited. My blasts went from 5.6% to 8.7% in 9 months, in the 7,8 months after diagnosed, my WBC was low, the RBCs low too, my platelets were the problem, really dropping, and I had to have platelet transfusions every 10 days. That was when the doctors decided it was "time" for the transplant: I was admitted in May for chemo, and stem cell transplant on June 1st 2017.

So here I am 5months post transplant, and it feels really good to be "cured" of MDS. Yes, the term relapse is always at the back of my mind, so I take
every single day with humble gratitude.

Dan, my doctor said generic would be fine. I don't take prograf, I take neoral (cyclosporine) and Vfend, etc.

At present I take 9 kinds of meds. I see my hematologist for my blood check twice a month, that might become once a month if the cells behave themselves. I have taken a year off from work, so I mostly stay home, cook, take walks, ride my bike around my area, pray a lot, and trying to well, be a better person.

My teenage daughter is very cooperative. She wears a mask at school, and when she comes home she washes her hands and gargles. I can't stress enough the dangers of germs and viruses brought back home to immune-suppressed patients.

Stay healthy everyone. Enjoy the golden leaves.
Meri
__________________
Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in 2017.
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