teachse

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  • in reply to: INCB 54828 #96089
    teachse
    Spectator

    Good evening! Just a quick update on the trial. I just finished cycle 2 with some good news! After six weeks of being on the trial my blood work shows my liver enzymes at a lower level. My tumor marker AFP (my CA19-9 has always been normal for me) went from 350 to 30. Alkline Phos 544 to 390, alaine amino trans 66 to 22 and aspartate amino trans 67 to 27. So, something good is happening. I’ve only had a few side effects: high phosphate, dry mouth, sensitivity to spicy foods, thinning of the hair, pruney finger tips and increased energy (not a bad thing.)
    This was also a round of other tests. Eye exam, EKG and CT scan. My eye exam and EKG were good. My CT scan did not show growth or shrinkage, but stable. This is good news, but not reflective of my labs. However, we know something good is going on 🙂 My next full battery of test will be on December 19 with results on December 22. I have now started cycle 3.

    in reply to: INCB 54828 #95929
    teachse
    Spectator

    Hi everyone! Just a quick update. I just finished cycle 1 and my labs show my liver enzymes at the lowest they have ever been! Good news 🙂 As far as side effects go I have had the following: dry mouth, constipation, thinning of the hair and high phosphate. I am now taking Renagel to help with the phosphate levels. I have also noticed increase energy. Not the energizer bunny, but not feeling like I need to take a nap 🙂 I will have my first scan in three weeks.

     

    ~ Sandy

    in reply to: INCB 54828 #94106
    teachse
    Spectator

    Hello! I am meeting with the research nurse and doctors this Friday, September 8 to start the screening process at John Hopkins. Are there any questions that you can think of that I should ask?
    Thank you in advance!
    Sandy

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