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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?

  • 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 posted an update

    nephrologist said I should get a stent in rt kidney ureter to get fluid moving and end pain but urologist said i should not have it done and must be used to living with hydronephrosis-didn't think I was--it wasn't such a constant bother-I am confused and worried about the next time for chemo pills......

  • Cookie48's Avatar

    Cookie48 posted an update

    I beat "Granix" this time-I took Claritin Wed,Thurs,Fri before the injection and on Sat and Sun plus pain med .I had read about an ongoing study and other cancer blogs suggesting the relationship of histamines.

    Two weeks ago was the most intense pain as if i was being beaten with a hammer up and down my spine.I dreaded the thought of more treatment for low WBC.
    At least 62% are affected by bone pain from this and" neulasta" but only 8% are severly {10 of 10 on pain}--so this study helped me and hope it brings comfort to others.

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    Cookie48 posted an update

    bone pain from Granix----another absolutely bone crushing horror!!!but I learned a study is being completed on use of Claritin. There appears to be an antihistamine factor. There are onocoloists prepping patient before shot by having them take daily dose and then pain reliever. -, 62-66% do have bone pain 8% have 10 out 10 extreme pain! rather allergic!--that is me! I am postponing shot till tomorrow and trying this method for 3 days as my onocologist just blew it off like I was talking about a mosquito bite! compassion and mercy is not a strong suit.