Hairy Cell Leukemia

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    • April 4, 2019 at 2:41 am
    LeeMar
    Participant

      Does anyone have Hairy Cell Leukemia & Stave IV melanoma?  Just diagnosed with both and doctor does not know how immunotherapy with ipi/nivo (Opdivo & Yervoy) will affect/work with Hairy Cell.

       

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        • April 4, 2019 at 3:57 am
        doragsda
        Participant

          I just did a very quick search on Google Scholar and there are a number of articles showing an increased incidence of melanoma in patients with Hairy Cell Leukemia, so there seems to be plenty of literature for the doctor to reference in selecting a treatment regimen for you (BRAF inhibitors showed up in the first article I glanced at).   With the combination, you probably want to be treated at one of the larger cancer centers so that they have access to experts in both diseases.   Best of luck to you.

            • April 10, 2019 at 8:20 pm
            LeeMar
            Participant

              Thank you so much.  This is the wife of the patient.  He had 2 infusions of Yervoy & Opdivo and then became very ill with side effects and has stopped treatment and is on heavy doses of steroid (prednisone).  Oncologist said at that his liver enzymes are 8x the norm.  He will not be put back on Yervoy ever again.  Possible Opdivo in the future.  He is extremely ill right now and we are devestated with this potentially life ending complication.  He will not qualify for any clinical trials as he has 2 types of cancer.  We have consulted with Dr. Hamid at The Angeles Clinic and will go back for a follow-up for gene mutation results in a week.  I have read about a treatment online (for both cancers at once) that he might respond to if his melanoma is BRAFV600E positive.  Kaiser (horror stories about them) which I strongly recommend you do not join, did test on melanoma tumor with negative result. However, Dr. Hamid thinks their test was not sensitive enough and they have done their own gene mutation testing; he is positive for the Hairy Cell Leukemia BRAFV600E. His family is overwhemled and terrified!  

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