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Dacogen/Low Blood Counts/ iVig

Home forums Patient Message Board Dacogen/Low Blood Counts/ iVig

This topic contains 1 reply, has 2 voices, and was last updated by  mdsfound 5 months, 3 weeks ago.

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  • #44789

    Diane Rasic
    Participant

    My 78 year old mom was diagnosed with MDS mid November. She completed 5 days of Dacogen and was told her blood levels were dangerous 9 days later. She was taken to the ER and admitted to the hospital. She had several transfusions; Whole blood, platelets, RBC, and her levels never improved. On the fourth night they said the only option was iVig. They sent her home the next evening with her lowest levels of the week. HGB@7.2 Platelets@4 WBC@2.4 ANC@1.9. Can anyone tell me if this is normal? She also has COPD and still smokes! They have her in palliative Care and are planning to continue transfusions after she sees her Dr. again on January 3. I don’t understand how she can survive with levels that low? They told us anyone who comes in to her home must wear a mask to avoid infections. Any advice or similar experiences would be appreciated. Her IPSS-R adds up to 5.5 which is in the high range. Her symptoms began in July/August. Thank you for any information.

    #44798

    mdsfound
    Moderator

    Thank you for your post with information regarding your mother’s health. I know this is a difficult situation for you and I would recommend that you take her to one of our Centers of Excellence in MDS for a second opinion. Some MDS patients get even third and fourth opinions all from MDS Centers of Excellence. She should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment.

    Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We can also assist in arranging a preferential appointment at any one of our centers on behalf of your mother. If this is something that you would like us to do, please email patientliaison@mds-foundation.org. I hope this information helps.

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