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• October 25, 2007 at 11:00 pm #19609
  roseanneinia

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  I’ve just found this forum and look forward to reading through your messages. My Dad is 78 and was diagnosed with MDS last month. He has had one round of Vidaza and is scheduled to begin another on Monday. He has also been getting weekly injections of Procrit. He is getting blood transfusions at a rate of 2 units per week basically since his diagnosis. He has had 13 units in total. Last week he did not seem to get any benefit from the blood (usually perks up quite a bit within 36 hours) Also within the past two weeks his WBC dropped to 1.3 so this week he had a series of Nuepogen shots.

  This is all still very new to us. I’m not sure of all your abbreviations, etc, but will figure them out. Just wanted to say “hi” and thanks for what you are going to be teaching me!

  October 25, 2007 at 11:33 pm #19610
  jaxem

  Member

  rose
  welcome to The Forum! I ‘d like to suggest you complete a profile so we can compare your comments to the specific aspects of the disease your father has. If you don’t already know, it would be informative if we knew the type of MDS your father has been diagnosed (RARS, RA, etc). It’s normal for counts to drop around the 2nd week after vidaza.

  October 27, 2007 at 12:01 am #19611
  Bec

  Member

  Welcome Rose, I like to tell new comers about the search engine on this site. It took me a year to find it and it is so valuable. Type in any questions you may have.

  I will be praying for you, your Dad and family
  Bec

  November 1, 2007 at 4:29 am #19612
  roseanneinia

  Member

  Thanks for the welcome, Jax and Bec. Each evening I try to read a few more pages through this forum. Lots to digest.

  The neupogen injections brought Dad’s WBC up to 8.something on Monday and he was able to start round two of the Vidaza. They are only going to do five days this time instead of seven. Not sure why.

  On Monday, Dad’s hemoglobin was 9.8, stayed the same from the week before. He hasn’t had a transfusion now since October 19…twelve days. We are encouraged by this and hope it means he is responding to the Procrit.

  I welcome any wisdom anyone wants to share with me. Dad is in good spirits. Mom has been a wreck. She was hardly able to eat for the first month, but is doing better now. Happy to see him not needing blood every five to seven days.

  November 10, 2007 at 11:11 pm #19613
  roseanneinia

  Member

  This is such an “up and down” disease. By that I mean I feel like something positive happens, but you turn right around and there’s something negative again. Dad did go 17 days without a transfusion from October 19 to November 5, but by the 5th his hemoglobin was 8.4 and he felt VERY bad. He got 2 units RBC that day and also the doc told him he was discontinuing the Procrit shot. I wasn’t there, so I don’t know why, but he must feel Dad was not responding to it. He’s doing OK this week, but yesterday and today he has horrible pain in an elbow. He thinks he’s just “pulled” or stretched something. I told him I thought he should call the doc and tell him about it. I feel it is probably MDS related.

  What does anyone else think? About the pain and about the procrit? Thanks.

  November 23, 2007 at 2:32 pm #19614
  **DONOTDELETE**

  Member

  Hi Rose..I am new here also, just doing my first post..My Dad is also 79 and He has been on and off Vidaza and doing Great!! He started Vidaza in the year 2005 and procrit He had 8 Vidaza treatments had some side effects but they gave him neausa med. before treatment which helped alot. When he first started his Blood count was a 6. had blood transfusion. now his red blood count is a 12.1 and white count is 7.20 platlet is 248 and monocyte is 14. He took a break for 4 months and his counts are comming up on there own. The Dr. just last week said he would like him to start again because there has not been any study done on someone that got off it. I would like him to stay off and if his counts drop then start it again. But the decision will be his. Just tell your Mom things will get better..Just hang in there. Here is the Phone Number for the Drug company they are very Helpful..1-866-742-7646 Keeping You in my Prayers triciab

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