• Cookie48's Avatar

    Cookie48 started following

  • Cookie48's Avatar

    Cookie48 started following

    User: po18guy

  • Cookie48's Avatar

    Cookie48 posted an update

    After the tumor removal-I got shingles into nostril.I was put on amoxicillian/anclovier/sulfa to get bacterial,fungus and viral. Really nauseated. Afterward I am in bone,muscle pain-virtually bed ridden. Is this a trigger to neulasta?
    The feet are dead or pins and needles-my ankle feels broken-even intense ear ringing-what is happening?Anyone relate?

  • Cookie48's Avatar

    Cookie48 posted an update

    Good news is fast growing tumor is not cancer or related to Mantle cell cancer. I have diagnosed with Dercums-which appears to be affected by things done to the body and forms more fat tumors which can add to pain as they touch nerves.
    I was so happy to relate MD Andersons Dr Wang telling me he keeps Mantle cell patients alive and even had two 90 year olds staying healthy.
    He follows FRONTLINE's DEC 2017 protocol of Rituxin every other month as preventative to relapse.
    BUT I got a call and the nurse said I had too many problems to be put on this method of prevention! It has really taken the air out of me.

  • Cookie48's Avatar

    Cookie48 started following

  • Cookie48's Avatar

    Cookie48 wrote on waltneely's wall

    I just got back from MDANDERSON-sitting in a room with all Mantle Cell Patients---Dr Wang says "I keep Mantle cell patients alive"--positive vibes everywhere! I too went to an onocologist that pulled down the computer recommended protocol for a person over 66-Rituxin/benemussin--I went into remission after 6 courses despite having tumors from ears to groin. And my onocologist wanted to let it wait til it returns. Fortunately my niece had the indolent mantle cell and the Dr. at Stanford kept her on oral meds and would ask about me and urge her to get me to go to a major university. I am so happy to have done it as he wanted me on every other month Rituxin. Oh-by way I found 3 other mantle cell patients who have developed hives from mosquito bites like me!!