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    Other Care (PET every three months): my remission has been over 3 years with PET scans suggested by

    MD Anderson every 3 months as became sensitive/allergic to Rituxin
    I did the first six month course but a year later was told to do just Rituxin once every few months-got way too sick -so just watching by PETSCAN
    MDAnderson is tops on Mantle cell but local onocologists would not follow thru with direction given which can be disconcerting. So thankful I could call and communicate with Dr Wang or Chen at MDAnderson!!!

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    User: po18guy

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    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?

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    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.