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On Revlimid starting my 13th year.

Home forums Patient Message Board On Revlimid starting my 13th year.

This topic contains 1 reply, has 2 voices, and was last updated by  Bridgette Perkins 2 weeks, 5 days ago.

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  • #45770

    PATRICK CAMMARANO
    Participant

    Bridgette– I am 81 and have just started my 13th year on Revlimid. In 2004 I was diagnosis with MDS and in 2005 things got very bad. I was getting 2 units of blood every two weeks. My life was turned up side down.
    Revlimid was approved for Mds patients in Dec. of 2005. So it was a new drug for MDS patients. I was put on Revlimid in 2006.
    1. — IT took 4 months before it started to work.Why is this important? If the doctor took me off it before the 4 months the results would have alter my life in a bad way. Revlimid has been a wonder drug. I have had a normal life. At 81 I go to the gym 3 days a week and have been on 26 cruises.
    I’ve had a CBC and a comprehensive metabolic panel every month for 12 years it is a requirement for being on Revlimid. I know more about my blood then the average person.
    2.– Revlimid is not a chemo drug. It is listed as a chemo drug for reimbursement reasons.
    3.– A doctor who worked with Revlimid told me it will work as long as the BLASTS are under 5. My BLASTS are 2.
    What are your BLASTS?
    4. — My Jan. 2019 CBC numbers—- auto WBC 4.4 —- Hemoglobin 13.4 —– Platelet count 158,000
    5.– I have had 3BMB 2004 — 2007 and my last one was in 2012.
    6. My problem is in the # 20 chromosome and yours is in the #5.

    Note: Bridgette :Most people get lost in thinking they will come down with AML. 70% of us will not. At one of the MDS forums I met a gentlemen and his wife who has been living with MDS for 17 years. He had 350 blood units over the 17 years. I did not talk to him about iron over load because I new the answer.

    Bridgette if you e-mail me @ murudy1@gmail I will give you my phone number. We can talk if you wish?
    I did not cover ; doctors, cost of drug and any question that you might have.

    #45775

    Bridgette Perkins
    Participant

    Thank u so much! God is so good I am so happy for you could you call me tomorrow my phone number is 314 532-6157 my name is Bridget Perkins thank you so so much! I will email you as well

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