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Thread: ALL Leukemia B Cell Phila positive

  1. #21
    Regular User
    Join Date
    May 2017
    acute lymphoblastic leukemia Philadelphia Positive December 2016.
    BCR/ABL by PCR was negative for p210 and p190 assays, but was positive for rare e1-a3 variant My age is 69 years young

    HI all glad you are all still fighting the fight, happy to report I am still tolerating the nilotinib after around 18 months now. Today is day 645 for me. I see my Oncologist Dec 10, 2018 again for blood work and checkup hoping the numbers are still good. I do have side effects from all my treatments but I am sure we all do but over all I am doing ok.
    I have also had other operations in the past and broken bones one thing I noticed about all this is that the treatment seems to make old injuries hurt more.

    My doctor seems to not want to admit that any of my aches and pains are caused by my treatment even though all the drugs side effects state they can cause muscle, joint and bone pain but what ever.

    If all goes as planned my doctor said we can be snowbirds again this year and Dec 27th we will leave PA and head down to Aransas Pass Texas for three months. Not sure of the DR will want me to get blood draw there or not guess we will see what he says Dec 10th.

    I sure hope you all stay inactive it is scary every time we get blood work waiting to hear everything is A-OK. may God continue to watch over us all. Semper fi

  2. #22
    Regular User
    Join Date
    May 2017
    Today I was reading about the side effects of Nilotinib think I have about 12 of them been taking it daily for around 18 months now. Noticed under common side effects it says, no blood pressure, no breathing and no pulse glad I do not have any of them.

  3. #23
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    I have recently been pondering the list of side effects associated with the 20 anti-neoplastic drugs that I have received. This is not counting the 12 non-treatment related (prophylaxis etc.) drugs I currently take, or the 30 or so others that I have received over the past 10 years. Neither am I counting the various supplements which I currently take or have taken. I have apparently dodged more bullets than Neo did in The Matrix.

    I note that there is but a single "side effect" of not treating our cancer.

  4. #24
    Experienced User
    Join Date
    Dec 2017
    My husband finished Blincyto cycle 2 today. He did have a bone marrow biopsy Monday and we will find out the results tomorrow at his scheduled dr. apt. Brucecav, I hope your 12/10 appointment went well. I hope you both have a Merry Christmas and a happy healthy new year.


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