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[LeAnnD]

Hi, my name is LeAnn and I have recently been diagnosed with MDS. I am 58 yrs old. My RBCs are the only cells involved at this time so I have what they call refractory anemia with ringed sideroblasts. I am considered in the good category according to the cytogenitics test but have had three transfusions within the last 2 1/2 months. My latest hemoglobin was at 6.7 when transfused. I have been on Aranesp injections for 9 weeks and will be getting the 4th injection on the 28th of this month. I was told that the injections would take about 12 weeks to show if they were working but with the recent drop in the hemoglobin it makes me wonder if they are working. The doctor has mentioned the drug, Vidaza, and I am wondering if anyone out there has started on Aranesp first and had the same results, and then started on Vidaza. I must admit the side effects scare me.

[bailie]

LeAnn I wish you the best and welcome. I have had a total of 12 cycles of Vidaza. The only side effect I have had is just feeling a little "crummy" in middle of the cycle and for about three days after. The "crummy" feeling is not bad. It just makes me feel a little lethargic. Most people tolerate it well. I credit Vidaza with extending my life.

What was your blast count?

[traceyn11]

Hi LeAnne

I will be 58 in November. I was just diagnosed in April. My main problem was my low white blood cell count and low neutrophils. I was on Vidaza for 2 cycles. It didn't work for me. Just make sure if you start on Vidaza and they give you Zofran for nausea that you watch out for constipation.

I am glad you are in the good category right now. I have learned quite a bit from the members of these forums and they are always very supportive!

[gramous]

Hello :-),
welcome on the forum.
Do you have your ferritine level? RARS type has usually a high natural ferritin level due to iron deposition in the macrophage of the cell. If your levels are too high, this can be benifit of using a iron chelator (desferifox per IV of exjade oral take). A normal level of ferritin can help the erytropoesis (production of red blood cell).
béné

[PaulS]

Hi LeAnn,

Sorry you have to deal with MDS -

I'm 56 and started out with low RBC - and otherwise mostly oK counts about three years ago - watched and waited for a couple of years but RBC's gradually declined - tried Aranesp for maybe four or five times but it didn't produce any results - RBC's were still not that low so we continued watching and waiting. Eventually RBC's got much lower and platelets started falling too - tried low intensity Vidaza for four or five cycles - again no results other than making platelets fall even lower - stopped that too. Counts continued to drop and became transfusion dependent - at least two units once a week. My Hemoglobin has gotten as low as 5. At that point docs decided transplant was the best way to go - and I"m now scheduled for one in September...

I didn't really experience side effects from either Aranesp or Vidaza - other than soreness at the Vidaza injection site - taking an anti nausea drug is a good thing to do with Vidaza - along with some fibre (prunes worked for me) - otherwise the drug wasn't so bad and it can have great benefits for some people. Hopefully it will work well for you.

Best wishts,
Paul