4+ years with MDS under control

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• June 10, 2008 at 1:38 am #20866
  Kirby

  Member

  Hi fellow MDS patients,
  My 11th BMB since diagnosis in Feb 04 continues to show no dysplastic cells in any blood line. I was at 16% blasts in April 04. I started Thalidomide and it controlled the MDS for 2.5 years. I have no chromosome abnormalities. I’m a good responder to Procrit and Neupogen.

  Revlimid was started in Dec 2006 at 10 MG/day. It has controlled my MDS for 18 months. My platelets have slowly dropped and are now in the 78-85 range. The doctor is having me take a “holiday” off Revlimid until the platelets rise above 90. It will be restarted at 5 mg/day. My Hgb ranges from 12.9 to 14, WBC ranges from 2.5 to 3.8. My case shows that Revlimid can work with patients that are not -5q.

  When I started treatments there were no drugs specifically for MDS, now we have at least 3.

  All of us with MDS respond differently. A positive attitude and finding a knowledgeable doctor with which you are comfortable can help in battling MDS. I find the more I learn about MDS the more “empowered” I feel in dealing with the disease. I’m fortunate to be a good responder to all the medications used thus far.

  Keep a positive attitude as you fight MDS.

  June 10, 2008 at 1:57 am #20867
  LynnI

  Participant

  That is awesome, I am very happy for you. I was suppose to start Revlimid but last week our insurance company refused to pay for it because I don’t have the -5q.
  Wishing you continued good health and feeling great.
  Lynn

  June 10, 2008 at 9:22 am #20868
  eve

  Member

  kirby

  so glad things are working well for you and that you are feeling great

  continued good health
  eve

  June 10, 2008 at 1:44 pm #20869
  Kirby

  Member

  Hi Lynn,
  The following article shows that non -5q MDS patients respond well to Revlimid.

  http://bloodjournal.hematologylibrary.or…ur cetype=HWCIT

  You might be able to use it with your insurance company to get Revlimid.

  June 10, 2008 at 2:24 pm #20870
  LynnI

  Participant

  Kirby, thank you very much, We are trying to change their minds. Hopefully this article will help.
  Thanks again
  Lynn

  June 13, 2008 at 5:10 am #20871
  helenr

  Member

  That is wonderful news Kirby. Unfortunately we are still waiting for the 10mg dose to work for David. with his 5 mg protocol there was an added week of a special stem cell factor as well. I hope it works this time without the scf. Apparently he developed resistance to the 5mg after 5 months.

  Helen

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