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lenniewoods's Recent CancerCompass Activity

  • lenniewoods has created a new message board discussion

    I am looking for others with this. If you don't know the gene fusion but know you have clear cell sarcoma of the soft parts. please contact me.  I have a child with this and want to share what we know.  

    May 12, 2018 view discussion
    • lenniewoods has replied to a post on the message board

      I am sorry to hear about your diagnosis.  My 19 year daughter was diagnosed in 2016.  I am looking for others with clear cell sarcoma that have the ATF1 or CREB gene fusion.  I don't think many people know, or their doctors leave this part out. We have met one other that has ATF1 and are traveling to meet him now.  If you have one of these please private reply to me.  As for advice, don't sto...

      May 12, 2018 view post
      • lenniewoods has replied to a post on the message board

        Hi Sarah,  i'm sorry you are having to deal with this.  My dear freind was diagnosed last July and he had similar issues.  His tumor was in the same area.  They removed much of it and said it was small.  His sight has been fine but in the beginning he would say words that did not make sense and couldn't get the words out.  Even his or our names.  He once asked his wife if "appreciat...

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        About lenniewoods

        Caregiver
        Brain Cancer
        Cancer Nutrition, Clinical Trials and Research, Diet, Emotional Support, Recipes, Side Effects, Spiritual Support

        I am listed as a caregiver but my husband and I are best friends with a patient and his wife so caregiver is whay we are trying to be.

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