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Update on me, sorry its long and confusing

Forums General Melanoma Community Update on me, sorry its long and confusing

  • Post
    KellieSue
    Participant
    I’m starting cycle 2 of clinical trial,
    I can’t seem to paste the trial. It is under the U of Iowa clinical trial cancer page.
    Title 07-08-01-50; Phase I/II Study Epigenetic Modification of Chemosensitivity and Apoptosis in Metastatic Melanoma: Treatment of a Resistant Disease Using Decitabine, Temozolomide and Panobinostat

    I start getting 2 shots of Decitabine week one and week two M,W, F. I got to the Clinical cancer center for the shots.
    Week 2 I also takeTemodar day 2 thru day 5 in the evening at home.
    And I also take Panobinostat at home every 4th for 8 days(i think)
    I am on week 2 of cycle 2 now.

    I am doing good except for am still dealing with some edema from the brain tumor. I’m being weaned from steroids. I have a follow up MRI on Feb. 7. We’re all hoping that the tumor has shrunk( from radiation) and there are no new tumors and the edema has resolved. I’m worried about being on the steroida for so long and am hoping the MRI is an improvement from last one.
    The steroids are hard since I don’t sleep well so I’m hoping theres good news next week.

    My right side still continues to improve from the stroke. I keep getting more feeling on that side and it makes me feel that I can keep improving. I use a cane now and walk as much as and still practice all mt OT and PT.

    I’m really trying to be positive about the trial. I feel that it could do some good things.

    I guess thats it for now. Thanks for reading and caring.

    Kellie( from Iowa)

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  • Replies
      washoegal
      Participant

      Kellie,

      You are a world  class fighter!  Sounds like a rough treatment but you've been through it all so you can weather this too.  Try to keep up your PT when you feel up to it.  You'll beat this!

      Mary

      Stage3

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      washoegal
      Participant

      Kellie,

      You are a world  class fighter!  Sounds like a rough treatment but you've been through it all so you can weather this too.  Try to keep up your PT when you feel up to it.  You'll beat this!

      Mary

      Stage3

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        Erinmay22
        Participant

        Kellie –

        Thanks so much for the update and so amazed at your fight!  So amazed by your journey!  Thanks for sharing your info…

        Erin

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        Erinmay22
        Participant

        Kellie –

        Thanks so much for the update and so amazed at your fight!  So amazed by your journey!  Thanks for sharing your info…

        Erin

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        Erinmay22
        Participant

        Kellie –

        Thanks so much for the update and so amazed at your fight!  So amazed by your journey!  Thanks for sharing your info…

        Erin

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      washoegal
      Participant

      Kellie,

      You are a world  class fighter!  Sounds like a rough treatment but you've been through it all so you can weather this too.  Try to keep up your PT when you feel up to it.  You'll beat this!

      Mary

      Stage3

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      triciad
      Participant

      Kellie,

      Thank you for keeping us posted on your recovery and treatment.  You are an incredible person, and you've been through so much.  Sending prayers your way that this clinical trial kicks melanoma to the curb!

      Tricia

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      triciad
      Participant

      Kellie,

      Thank you for keeping us posted on your recovery and treatment.  You are an incredible person, and you've been through so much.  Sending prayers your way that this clinical trial kicks melanoma to the curb!

      Tricia

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      triciad
      Participant

      Kellie,

      Thank you for keeping us posted on your recovery and treatment.  You are an incredible person, and you've been through so much.  Sending prayers your way that this clinical trial kicks melanoma to the curb!

      Tricia

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      FormerCaregiver
      Participant

      Kellie, thanks for the update. Wishing you good luck with this trial. It sounds interesting and promising.

      Take care

      Frank from Australia

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      FormerCaregiver
      Participant

      Kellie, thanks for the update. Wishing you good luck with this trial. It sounds interesting and promising.

      Take care

      Frank from Australia

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      FormerCaregiver
      Participant

      Kellie, thanks for the update. Wishing you good luck with this trial. It sounds interesting and promising.

      Take care

      Frank from Australia

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Viewing 8 reply threads
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