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    sugarbear wrote on Dick_K's wall

    dick I haven't heard much from you lately have you been doing ok on the zelboraf ? I couldn't handle that after 6 months went off it and am now on clinical trial for pd1 for 2-1/2b yrs and stable yay !!!!! just wondering how you are doing

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    Question: Clinical Trail

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    User: Dick_K

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    User: Keith59

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    sugarbear shared an experience

    Radiation (External radiation ): the radiation was on two brain tumors and the radiation was painless but the steroids they putme on to reduce swelling -well lets just say mey spring cleaning got done -and on three hours of sleep per night max -my husband had to keep telling me to slow down or id hurt myself -i ate the refrigerator and gained a few pounds -that wasnt too bad -the energy level was great -it was coming off the steroids that was bad -the leg aches at night and the headaches were bad too -the joints were affected and my body fought losing the steroids every step of the way -once they werre totally out of my system i was able to go back on clinical trial at dana farber for pd1 .while i had the cyber knife spot radiation i was unable to be on trial and until i got weaned off steroids so i misseda few infusions ,which was scary .now im on course with the pd1 and doing fine -last scans in june showed shrinkage of brain tumors and the ones in my body too so chin up next scan are next week sept 11th so will update after that

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      Keith59

      Good to hear the PD1 is working for you! I have had two rounds of PD1 so far. Won't scan until after four rounds. It seems to be working. I was just put on a low dose of steroids because my adrenal gland has stopped. How long did it take for your steroids to kick in? Hope all is well!

      over 2 years ago