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Thread: ALL Leukemia B Cell Phila positive

  1. #11
    Regular User
    Join Date
    May 2017
    Abeucher, have the exact kind of Leukemia as you also Phil +, I am now almost at 12 months since my stem cell transplant Feb 22, 2017. I am 68 years young hope things work out ok sure is scary reading about this as I am being told the same no signs of anything.
    I started with Sprycell had it for around say five months then my kidneys failed and I have been taking Nilotinib now for around five or six months now.
    Hope they can give you a new treatment just crazy how this stuff can be gone with no signs then bang hit back scares the heck out of me. One just does not know what to do carry on with life or get everything in order.

    God Bless

  2. #12
    Newbie New User
    Join Date
    Dec 2017
    Hello Brucecav! It is my husband that has leukemia, like you. There is one difference that I noticed between you, my husband was not prescribed Sprycel until he relapsed. I remember his BMT doctor inquired with the hematologist post transplant, but he didn't prescribe it right away. I think its good that you were on it as a preventative. I am sorry you experienced kidney failure, but I'm glad you have had success with the second therapy. My husband is on the same chemo that you are on now. I am wondering if you would be interested in sharing any information regarding your treatment plan prior to your transplant and if your donor is related? Also, what type of work you were in. I am always looking for information to try to understand how someone gets leukemia. We were told my husbands leukemia is caused from long term exposure to either gasses, chemical or pesticides. We cant think of anything he did long term that he would've been exposed to. He spent 32 years working in the grocery business. That was his only job.

    He was admitted to Moffitt Cancer and Research Hosp in June 2014. His treatment plan was HYPER-CVAD. He did not reach remission after the first two cycles. He then received 4 more cycles before his transplant in December 2014. His older brother was his donor and I thank him all the time. He saved his life. We are thankful. It has been a long road with many bumps but we're very fortunate to receive the care he's receiving.

    If there is anything I can help you with, please ask. We are always willing to share information if it will help someone.

  3. #13
    Regular User
    Join Date
    May 2017
    Well I should have kept a record of all my treatments but did not. My Acute ALL Phil + is on the presumptive list of diseases for exposure to Agent Orange and contaminated Camp Lejeune drinking water. I have been a 100% disabled veteran for many years but when I was 1st diagnosed the VA said they would not pay for my treatment as it was to expensive. Then they stated because it was not service connected they would not pay for it. Then after it became service connected they said they would not pay for my stem cell transplant. Anyway I had private insurance that did pay for it or I would have died as they did not award my service connection till after I would have died without my stem cell transplant my doctor at 1st gave me 3 months to live.
    The first doctor that diagnosed me said I had ALL Negative but then I was immediately admitted to the Hershey Cancer Institute where I started chemo IV same day. But then their tests showed I had acute ALL Phil positive so I was switched to the Sprycell. I forget but then get more chemo IV to kill my Leukemia and so on before my stem cell transplant. I was very lucky as my sister and older brother were both perfect stem cell matches but they prefer giving a man stem cells from a man when possible so I received my brothers stem cells Feb 22, 2017.
    As said I was taken off the Sprycell after several months and was in the hospital for 10 days because my kidneys shut down and fluid was building ou outside the lungs and leaking into my lungs. I was again lucky as my body got rid of the fluid on it's own after I was given water pills for several days.
    I was off the Sprycell for around 20 days then started to take the current Nilotinib - Tasigna. He olny has me on 400 MG per day maybe because of my age I am 68 not sure but have only been taking 400 MG and the usual does is 800 MG.

    He said I have a very rare type my Chromosomes are crossed or something like that I will ask him Monday Feb 26th since my chromosomes are crossed what will stip this from coming back when I stop taking the Nilotinib after two years.

    I am also lucky my wife of 45 years is a retired heart nurse and she right away researched everything about Leukemia I would have been lost without her. She is also my ears as I am deaf without my hearing aids and can not understand my cancer doctor good as he is Japanese. He is the head of the Hershey Cancer Institute he said while he has treated many Leukemia patients I am the 1st he has treated with my rare type.

    I am sure your husband has been through many, many treatments as I have, had at 1st many blood transfusions and platelet transfusions and other transfusions. Will be my 1st birthday Feb 22nd my doctor said the magic number is to make it two years after that he feels I should be safe from this coming back but as said we do not understand about the crossed chromosome type.

    I sure hope your husband goes back into remission and stays there tell him to hang in there hope we both stay out of the hospital I hate hospitals. God Bless

    My official diagnosis
    acute lymphoblastic leukemia in December
    2016. BCR/ABL by PCR was negative for p210 and p190 assays, but was positive for rare e1-a3 variant
    Last edited by Brucecav; 02-19-2018 at 02:23 PM.

  4. #14
    Newbie New User
    Join Date
    Apr 2018

    I'm 'new' to this forum [Europe, Belgium, Antwerp]...
    My wife got the diagnosis 'T-PLL' a few weeks ago.
    The chemo/immuno(mabcampath) should start next thursday(9 april '1.
    Has anyone any experience, or knowledge of therapy of T-PLL with 'Venetoclax'
    because this seems to proof 'promissing' in some research projects and
    we consider it as next phase if the more classical approach wouldn't give enough result.
    (examples of R&D: Europe = Medical University of Vienna / US = https://immuno-oncologynews.com/wp-content/uploads/2018/03/nejmoa1713976.pdf)


  5. #15
    Newbie New User
    Join Date
    Dec 2017
    No my husband has ALL ph+ - I wish you and your wife the best. Stay strong


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